Tag Archives: vigabatrin

A trip to the ER and other medical hassles.

January 3, 2015 Rebecca Gaunt 6 Comments

And of the medical hassles, the ER was the most pleasant one.

Our Christmas Eve tradition for the last few years is to have family over for Christmas Eve dinner. We stuff ourselves with appetizers and leave a ton of leftover ham, mashed potatoes, pasta salad and green bean casserole. Within three minutes of our guests leaving, hardly even giving us time to complain about the bottle of wine that we opened and was hardly touched (it was one of those mondo size bottles that leaves me torn between not wasting perfectly good wine and the fear of sleeping through Christmas Day in a stupor), Connor was fussing for his iPad by the kitchen table and went down with a loud thunk. I picked him up and set him on the island, hoping for his standard forehead bruise. It’s a constant battle to keep his forehead a normal skin color, and that is why he frequently wears head protection. I realized he was bleeding and called to Chris for paper towels. One swipe and I knew we had a problem. This was deep.

We headed to the Kennestone Hospital ER where Connor received three stitches. We were in and out in just under two hours. It was impressively simple and undramatic, but I guess when you’ve already done the NICU and brain surgery, three stitches ain’t no thang. In fact, Connor had spent the entire day being royally uncooperative as far as smiling for photos, giving me the first in the waiting room with a hole in his forehead.

Getting the stitches in was easy. Getting them out turned out to be the pain. The ER doctor informed us that while we could come back after the holiday, the wait would go back to standard long waits and suture removal is bottom priority. He recommended getting them removed at his pediatrician. I love his pediatrician. I do NOT love the office staff that stands between us. I called to make an appointment and was told that she’d have to check and see if anyone would do it on a young child’s face. “It’s just three!” I tried to persuade her. Two hours later, a nurse calls me back and says it’s okay. She transfers me to the scheduler. “Well, they don’t usually do this on kids under three. I need to check.”

“We just went through this,” I explained. “I was transferred to you by the person who got the okay.”

“I still need to check.”

WTF.

After a long hold, she comes back. “You’ll have to take him back to where you got them.” I don’t think a doctor was even consulted. It was just “office policy.”

I was pissed now. I informed her we would not be going back to the ER. I did not inform her of how wasteful of time and money this was, or what a burden this kind of crap is on the system. I asked if an urgent care would do it. She thought they would. But after careful consideration of the all the germs floating around in waiting areas and the fact that the flu is reportedly raging through Georgia, we opted to Google stitch removal and do it at home. If there were a lot, we wouldn’t, but three seemed doable, and it was actually pretty easy. So take that, idiotic office policy.

I also handled the fact that last month’s paperwork glitch regarding Connor’s Sabril (vigabatrin) prescription was apparently never resolved. Typically, if there is an issue filling this prescription, a group called SHARE works with the manufacturer to make sure prescriptions go out. I learned that this is not the case if you are marked non-compliant with the eye doctor paper work. They had sent us last month’s prescription in spite of the screwup. Thanks to the FDA, they couldn’t do it again.

You see, Connor takes a seizure med that carries some risk to peripheral vision. The FDA, when they finally got around to approving it in 2009 — 30 years after initial clinical trials — decided that if you wanted to use it, you had to have eye exams every three months. They also recommend ERGs every three months. An ERG requires Connor to be put under for 45 minutes to an hour. We stopped those a long time ago. He had one come back indicating a change. But nobody could tell us squat about what that meant, or if it was even more than a fluke. Not even all eye doctors recommend it. Some bend to the fear of the FDA and others flat out tell you it’s a waste of time and they can tell you very little with young children.

The regular eye exams (at which the eye doctors also acknowledge they can’t tell you much and it’s just an empty requirement) are very mandatory. Paperwork must be submitted to keep the meds coming. Some parents speak of obtaining waivers for these, but those waivers seem like unicorns to most of us. Something wasn’t submitted properly. Then it didn’t get fixed properly. And then it was decided by all parties (other than me) that the best option was to not give my child his seizure meds and status seizures, brain damage, even death was a better possible option than some minor impairment of his peripheral vision. The FDA is apparently well aware that one needs 20/20 vision when on a ventilator fighting for life. I did not inform the manufacturer or pharmacy that I was able to obtain some for Connor so that he was not at risk for the terrible dangers of cutting a med cold turkey. Eventually the kickass assistant at his neurologist’s office was able to fix the situation, further proving that they are the only medical office I have ever been able to count on.

Sabril was not the only source of my fun with pharmacies. I tried to refill his Onfi. When I called to do so I was informed they were out and I could fill it locally if I had the local pharmacy call to transfer it. Annoying (don’t you plan for your regulars?) but okay. I had filled it at CVS before. First I tried Walgreens because it’s closest. No pharmacy in the area had it. Then CVS. Nope. Then Kroger. Nope. I called the mail order pharmacy, Optum Rx, back and asked what was I supposed to do now.

“Well, you may have to call his neurologist and get a prescription for something else.”

Something else? Just replace his highly addictive benzo?

“I don’t understand how you just run out of something you are supposed to mail on a regular basis. I want a supervisor.”

Three people later, we were able to piece together that by “out” what they actually meant was that they could have it to me by the following Wednesday, but they didn’t have it that day (Friday). It apparently took three people to get this vital piece of information that took a major issue to a non-issue. In pissed relief, I told them that was fine.

Have I mentioned I have three different pharmacies for Connor? So much for safeguards where the pharmacist can be that extra set of eyes watching for interactions and issues. I have to get Sabril from CVS Caremark (which is great as long as the FDA stays out of it), Onfi is from Optum Rx (their motto is “At least we’re not Accredo”) and all others from a local CVS.

So now we’re stocked back up on meds. It’s 2015. Despite all the venting in this post, I think it will be a good year and I hope it will be a good year for all my friends in the epilepsy community that spent the holidays in hospitals. I will leave you with some pics of Connor’s Christmas (three times in three homes!) to cleanse the palate.

Checking out the turtles with Grandpa John.

Medical Marijuana, Reblogs

CONNOR

November 20, 2014 Rebecca Gaunt Leave a comment

Parenting, Tuberous Sclerosis

Connor is a fish.

June 22, 2014 Rebecca Gaunt 3 Comments

We just got back from a week in Venice, Florida at Chris’s parents’ house. Since Connor has weekly aquatic therapy, I was hopeful he would enjoy the pool this year, but I honestly expected he’d maybe get in a couple times and be done after 20-30 minutes. Not so. He was in every day with us the whole time. In fact, he quickly learned that once the safety fence was down and at least one adult was in the pool, that was his cue to crawl over, turn around backward about two feet from the edge and back into the water until he hit the step. Aquatic therapy has given him great confidence in the water. Too much actually. He constantly wanted to break free from us and his flotation devices to do his own thing.

It was a great week sandwiched by two crappy seizure days. He did great after we upped his vigabatrin a couple weeks ago, then he had another awful day in which he only had two or three clearly identifiable seizures, but was just off the rest of the day, weak and had a hard time moving. Bad seizure days always wipe out his arm strength, so even if he gets motivated to move, he ends up with bruises lining his forehead. Sometimes his chin takes a hit, too. And once he’s motivated, it’s hard to stop him. We try to keep him on the carpeted areas, but he always gravitates to the hardwood.

We upped his vigabatrin on Sunday morning and the next several days were great. Then Thursday night he woke us up crying, which is very rare. For the second time ever, he had what I guess would be classified as a partial seizure? One arm was extremely stiff and unmovable. He cried until it stopped. I stayed in the room and slept with him and he had 2-3 more of those that would wake him from sleep and make him cry. He also had three tonic clonics throughout the night. I always thought a partial seizure would be a better type to have because it’s just a body part and you are aware, but instead those seem the worst for him–but I don’t know if he cries because it hurts or because it scares him. So Friday he was rather off and not as energetic as usual, though he did perk up the second Daddy got in the pool and commenced his backward scoot. I slept with him again Friday night, our last night in Florida. He didn’t have any seizures until we woke up to leave, but as soon as he awoke he had a short tonic clonic. I thought he was done, but then I noticed his eyes flitting back and forth in a weird way and his eyelids twitching. I waited it for it to stop. And waited. Chris came in behind me. It kept going. Nobody spoke out loud, but a basic summary of our thoughts is as follows:

Oh my God. This is it. His first status seizure,

We’re not going home; we’re going to the hospital.

I don’t want to have to move to Colorado. Are we going to have to move to Colorado after all?

And just as I think we were both struggling to make the call that it was time to head to the ER it stopped. Not a status seizure, but one of the longest he’s ever had. And if we hadn’t been leaving and turned on the lights, I don’t know if I would have known it was happening. We don’t have a prescription for Diastat (an emergency med), but I think it’s time to talk to his neuro about it. Just in case. We have Klonopin on hand in case of clusters, but he can’t swallow it in a situation like this.

Florida, I’m begging you to get your MMJ program up and going. You’ve passed the oil, and I hope you will pass Amendment 2 this fall. And it goes without saying that if Georgia does it too…

Last night his motivation was present, but not his arm strength so it was a battle to keep him in carpeted areas. I’m happy to report this morning is much better!

I will leave you with pics from our awesome week in Florida:

Dirty Banana at Sharky's. — Dirty Banana at Sharky’s.

We borrowed Chris's parents' "fun" car for date night. — We borrowed Chris’s parents’ “fun” car for date night.

Getting hot dog's at Anita's sandcastle. — Getting hot dog’s at Anita’s Sandcastle.

Checking out the manatee at Mote Marine.

Current Events, Medical Marijuana, Tuberous Sclerosis

I got soaked at the Hose the House fundraiser for Journey of Hope.

June 8, 2014 Rebecca Gaunt 1 Comment

This last week did not get off to a great start. I’ve mentioned we’ve had some issues with an increasing number of seizures breaking through in spite of the modified Atkins diet. We finally bit the bullet and raised his vigabatrin dose Tuesday night when not only were we seeing him have 2-3 a day of his typical seizures, but then he also appeared to be having some sort of activity with no clear stop and start — he just wasn’t right. His eyes would look unfocused and he was physically weak. Sometimes after a rough seizure he has trouble moving around and his arms can’t support him when he crawls, but that’s not always the case and it usually goes away in 30 minutes. But he was like this for three days. I had hoped the diet would be successful enough to allow him to wean meds, but it appears he needs the combination of a therapeutic dose of vigabatrin with the diet. He had gained five pounds since the last time we adjusted his meds, so clearly vigabatrin is just far too essential to his well being. We have now gone four days without seeing any seizure activity since the upped dose and he’s back to his normal active self — a great relief as the idea of possibly having to relocate to Colorado had started rear it’s ugly head again. We are trying to hold on with traditional medicine until the option of medical cannabis is available closer to home.

After all that, it seemed like an appropriate way to end the week by taking part in the fundraiser for Journey of Hope, a charity started by Rep. Allen Peake (who sponsored HB 885 this past session in an unsuccessful attempt to legalize CBD oil here in Georgia) to help families, who have exhausted traditional medical approaches to treating their children’s seizure disorders, relocate to Colorado to get the medicine they need. It all started several weeks back when Kim Clark challenged Corey Lowe to the cold water challenge, a method of raising money for charity via the Internet that has gone viral recently. Kim (a mom from Georgia treating her son Caden in Colorado) challenged her on behalf of Realm of Caring, the nonprofit that has become famous for providing the strain Charlotte’s Web to sick children at a reasonable cost. Corey (a mom from Georgia who will soon take her daughter Victoria to Colorado) chose to challenge more people on behalf of Journey of Hope which started the chain of events that led to me floundering my way into an inflatable pool ring in an Olympic sized pool Saturday morning in the Hose the House for Hope event.

Several representatives, senators and Georgia law enforcement officers accepted the challenge to raise money and participate, jumping into the pool to swim out to the moms from families that were involved in fighting for HB 885. You could also pay $50 to douse a participant of your choice in ice cold water. Oh, and some of the dads dressed up…but I’ll let the photos do the talking on that.

I am happy to say that this much money has been raised so far:

If you are interested in making a donation, please check out the web site for more information — Journey of Hope.

Most of the photos are mine, but a few are borrowed from Facebook…please let me know if you want credit for a photo. I didn’t pay attention when I snagged them 🙂

I'm impressed my pasty white legs didn't blind anyone. — I’m impressed my pasty white legs didn’t blind anyone.

Oh, and those dads I mentioned…

Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

I never thought I would be writing this story. I never thought we would be living it.

May 25, 2014 Rebecca Gaunt Leave a comment

Second Annual “Blogging for TSC Awareness Month” Day 25

by guest blogger Becky Ruppe (Cumming, Georgia)

I will start off by saying how hard it is to sum up our journey as it is a never-ending battle and the past seven months seem like years. Our story with Tuberous Sclerosis Complex 2 begins with twins, after many times trying to start a family and after trying everything; as soon as we stopped trying, we were blessed with twins. We were so happy, but we would soon find out; everything was not as it seemed. As time progressed in the pregnancy, his twin sister passed in the womb from another rare disorder, Trisomy 13. Not long after all that, on ultrasound, the doctors found tumors in our son Ben’s heart. We were devastated by this news and still recovering the loss of his sister. That day was tough and the first time we had ever heard the words Tuberous Sclerosis. I remember thinking there is no way we could have two rare things, but as time progressed more tumors popped up on ultrasound and we were told our son Ben had an 80% chance of having TSC. He had more than seven tumors in his heart and one that should have been blocking his outflow; it kept growing and growing. It was honestly a miracle that he was surviving, as the one blocking his flow was so large. We found every day was a challenge emotionally and we had nothing left to do but to pray for a miracle that we wouldn’t have to do an emergency c-section to try to save his life with open heart surgery to remove it.

We had fetal MRIs to look for tumors in his brain, but nothing showed up. Finally on October 23 we gave birth by c-section to our son James Benjamin Ken Ruppe, he went straight to the Nicu when born, he was not eating and was given a feeding tube and was given medicine to keep his blood flowing through his backup channel in his heart. We stayed hopeful, but by day three they did an MRI and we were walked into this tiny room and given the findings of his MRI. I remember that walk like it was yesterday, I had tears before we even made it to the door. They found multiple tubers and nodules in his brain and was given the actual diagnosis of TSC. It was heart wrenching, the hospital made it seem as though it was a death sentence, we had him baptized that night. We were clueless what was going to happen, would he need heart or brain surgery, would the medicine continue working, would he start having seizures, so many questions not one doctor could answer. Then two days later; our son Ben was able to come home. We followed up with three doctors the week we came home. It was overwhelming, scary and honestly I don’t know how we made it through all that.

Since giving birth, most of his tumors have reduced in size in his heart and he is currently in therapy once a week for muscle loss due to his TSC. He started having seizures New Year’s Eve and ironically those seizures did not show up on his EEG. He has had several EEGs, and the seizures have become more frequent. About two months ago we were told his EEG reflected localization epilepsy with focal onset seizures. It has been really horrible to watch him go through all this. Every EEG brings tears for our son.

Thankfully, when we found out about the possible diagnosis of TSC, I reached out to the Tuberous Sclerosis Alliance and have met a really great support group. We also enrolled our Ben into two studies that we travel to Boston for.

Most recently we noticed Ben started to drop his head and we called his neurologist and went into the hospital for a VEEG. Within an hour and half of him being hooked up, the doctor came in to tell us he was in fact having infantile spasms. The funny thing was that they give you this button to push every time he has an episode. I pushed the button twice during that hour and half. What I found out later, was that he had multiple spasms and clusters and other seizures that I did not even recognize. I will say it was very frustrating that nobody came in and showed me on the video — this is a spasm, this is a seizure. I was told by the Children’s Hospital in Atlanta that they do not have the medication Sabril, which I understand is the best med of choice to treat Infantile Spasms. This to me was a load of crap. How can you not have this medicine and why did we have to wait to get our son the best treatment when from day one we were told that Infantile Spasms can be deadly?

They said I had to wait and get it from his doctor’s office and they sent me home with Klonopin. He was already taking Keppra for complex partial seizures. Thankfully, his local neurologist Dr. Flamini got us the meds in two days, but in my mind it was still unacceptable to be sent home without the best meds for his treatment.

Since coming home from the hospital Ben is having probably close to 70 + seizures a day.

We have increased some and lowered others of the meds he is taking. We are currently on day 4 and waiting for a change. His spasms have changed into something completely different, with the occasional head drop. Now looking back, when Ben was 8 weeks old, he was extremely colicky. We took multiple videos and were always told it was nothing and that he was fine, but I know now, judging from his current colicky status (Infantile Spasms) that he was in fact having IS and or some seizure activity as a baby and because his EEG was not showing it and based on opinions of doctors, we delayed treatment. I also know that his infantile spasms are not the normal spasms you would see. They are not as defined and often rotate from one side to the other. We also were told recently that he has multiregional epilepsy and that he is not the best candidate for surgery.

If I could go back, I would have started medication sooner, because who can help but wonder what damage has been done. In five days, my son went from having excellent head control to having very little and he also went from being able to stand and put weight on both his legs to not being able to do that for more than a second.

This past Saturday we called 911, as Ben had a seizure that lasted over 20 minutes. The EMS came and they said his heartbeat was fast, but everything else was good and we just continued to watch him per his local doctor. I am not sure how everyone else feels about giving your baby medications, but giving my Ben three medications twice a day is a struggle. It is hard… every time I have to mix it, I have to take a deep breath to get through it.

I will never give up on my Ben. My husband and I are in a constant struggle with acceptance, and no matter what people say, it is sad and it is hard. There is nothing that can describe watching your son, your sweet innocent baby boy, have seizure after seizure and all we can do is sit back, love him and watch. TSC is the worst pain in the world to us. We aren’t giving up, but we are giving in to the emotion that we are allowed to feel pure anger and a little helpless at times, as there are limits to what we can do for him — the rest is up to somebody else. I hate every second of every day that I have to watch him suffer. Many will say that is not a way to live — nope, it is not — but it is our truth. We still check him to make sure he is breathing and we are still living and fighting and find massive amounts of joy in everything else our sweet Ben does — when he smiles and when he loves. Our relationship with TSC is completely unavoidable and that is what makes it suck and it is what it is.

Each day we face TSC, we face many challenges emotionally and financially and many sleepless nights. We want a cure so bad it hurts. You are never prepared for the what ifs. I never thought I would be writing this story. I never thought we would be living it. I never thought I would be giving our son three medications that make him totally not himself. I never thought I would be learning a whole new language. I thought I would be going somewhere completely different. I thought a lot of things. I have wanted to be a nurse my whole life, and I have wanted to be a mother my whole life. I thought so many times I would go to nursing school. I know now that that feeling of wanting all those things is now my reality, I got what I want and wouldn’t trade it for anything, I am right where I am supposed to be. I thought having a child would be so different and that we would play normal people, but turns out we are, it’s just our normal day to day is just a little different than others.

I love every minute I have with my precious Ben, I love that I have been able to jump right in and take care of him. I love that I can make him smile. I love that my husband is such a great father and husband to me. I know that TSC affects us, but it also affects our friends and family, as they are constantly in this battle with us. We are thankful for all the support we have been given, by the TSC Alliance, the TS Mommy site, Dr. Flamini and all the doctors he sees.

We don’t know how the next year is going to go, we don’t know if he will stop breathing tomorrow from a seizure or if the next seizure will be the one that slows his development even more. Will he need brain surgery? Will his kidneys be affected? Will he be able to have children? Will he learn to walk and throw the ball? All the simple things in life; we are left wondering and hoping. We don’t know what kind of life he is going to lead yet. Will we as parents be able to afford the best treatment for him? Watching our son have seizures is something you can’t describe, there are no words. I do know that my son saved my life. If it was not for him, I am not sure I could have made it through the loss of his sister. So, now my husband and I are giving our life to him. I know now that his sister is in Heaven watching over Ben and our family and not a day goes by that I don’t think about how our life would be if we still had her with Ben, but I know now that that happened for a reason. Ben needed his extra Angel and she will take care of us and watch over our family.

We find great comfort with every second we have with him and every morning we wake up to his smile. The light at the end of our tunnel is holding onto hope that research in finding a cure for TSC 2 is continued and that one day there will be more options for treatment for our son and maybe soon medical Cannabis Oil will be legal in the state of Georgia, because after giving my son all of these harsh medications, I have no doubt that I would choose that first before any of this stuff he is on currently.

My family is the best family in the world. We will never give up and we will fight every day.

Our story with TSC 2 will continue and one day I hope we can look back on all these hard days and say, We showed you TSC… We showed you…

Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

I want new TSC parents to know that there is hope.

May 2, 2014 Rebecca Gaunt 2 Comments

Second Annual “Blogging for TSC Awareness Month” Day 2

by guest blogger Brittany Schwaigert (Memphis, Tennessee)

Our story begins in the spring of 2008. My husband and I had just welcomed our very first child into the world. Greyson was born a beautiful and healthy 7 lb., 10 oz. baby boy and there were no indicators at all that anything was amiss with his health other than a slight touch of jaundice. He was, and still is, such a beautiful child. We were so thankful that he was healthy. We never took it for granted.

Then at two months of age, Greyson had his first round of vaccinations and subsequently developed what looked like sun spots on the tops of his thighs. The vaccinations had been administered in his thighs, though, and I was aware that the appearance of the spots might well be purely coincidental. I was far from panicked, but looking back on it, I do remember that point as being the first time I had misgivings concerning Greyson’s well-being.

Things took a turn when, at approximately three months of age, Greyson started to develop a strange habit. His habit looked to me like the Moro reflex – a phenomenon that occurs when some babies are placed on their backs and respond by throwing their hands out in the air. But in Greyson’s case, this behavior kept happening at strange times, and in clusters. Close family members who witnessed the behavior or were told about it tried to tell me and my husband that it must simply be an immature nervous system, or said that “babies do all kinds of weird things.” My gut instinct, however, told me that something just wasn’t right.

Then one afternoon, Greyson was lying with me in the bed and I was watching him sleep. All of a sudden it hit me: what if this behavior was a seizure? I practically ran to the computer to find out what I could about behaviors associated with infant seizures. What I found made my stomach sink into the ground. It hit me like a Mack truck that what I was seeing in Greyson was the outward manifestation of a dangerous and aggressive type of seizure called Infantile Spasms. It felt like my world was crashing around me in one split second.

I have always felt that it was the hand of God in my life preparing me for what was to come that, before giving birth to Greyson, I had worked for a pediatric neurologist managing an event facility that he owned. I called him immediately on his cell phone and left him a message. What followed in the next few weeks would be a complete blur.

Greyson was examined by the doctor in his office, but there was nothing that he felt he could definitively diagnose without an MRI. We scheduled the MRI and when the day came, I can say without hesitation that putting a three-month-old infant into an MRI machine was one of the scariest moments of my life. I sat in that MRI room with my baby, freezing to death, trying not crumple into a heap on the floor.

After the results came back from the MRI, the doctor called me at home. He said that he saw “indications of Tuberous Sclerosis.” The doctor explained that Tuberous Sclerosis (TS) can cause epilepsy, learning disabilities and sometimes even blindness if victims develop the tuberous growths caused by the disease in their eyes (incidentally, this is the reason I feel it is so important to go directly to a TS specialist when anyone is diagnosed with TS. Though I’m thankful we got a diagnosis when we did, due to the relative rarity of TS, I was given barely a shred of information about the disease that would come to change the entire scope of our lives. The only thing I knew about TS was that my husband’s step-mother’s sister had it and she had been institutionalized for years). I looked at my precious baby lying there and suddenly was filled with fear for his future.

After a myriad of other diagnostic testing, including blood work, a lung x-ray, an echocardiogram, a kidney ultrasound, and several EEGs, the neurologist we had been referred to and his group came to the conclusion that Greyson’s condition was, indeed, TS. On top of that, Greyson was also diagnosed with Polycystic Kidney Disease (PKD). Because of the proximity of the genes responsible for both TS and PKD, in many cases of genetic mutation associated with TS, both of the genes deleted at the same time. They did in Greyson’s case, and our lives have not been the same since.

We continued going to this same neurologist for months, even after he said ridiculous things like “I can tell when someone has TS just by looking at them,” or “don’t Google this disease,” or “I guess we can try Vigabatrin (the first line of defense against infantile spasms, which was only available through international mail order pharmacies at the time) but you will have to get it on your own from Canada,” or my favorite (from his associate): “Are you asking me if every spasm is like a bullet to the brain? No, I don’t think so.” Meanwhile, my child was suffering intensely. He was crying every time he had a cluster of seizures and it was heartbreaking to watch. It gives me physical pain to think of it now.

At one point at around six months of age, when my child was incredibly doped up on Phenobarbital and ACTH for his seizures, and bloated to an unrecognizable state, I broke (I am not even going to mention the horror of sticking my child with a needle twice a day). I just couldn’t take the stress anymore and I demanded that he be admitted for a 48 hour EEG. During that hospitalization, Greyson had his life saved the first time. His blood pressure was so high from the ACTH and his PKD that he had to have emergency blood pressure meds put in through an IV. He could have had a stroke at any moment.

After that hospital stay, receiving no answers as to how we were going to stop Greyson’s seizures, I made up my mind that TS was not going to get the best of us, or him. I immediately researched the nearest TS clinic. At that time, in 2008, the closest clinics were in St. Louis and Nashville (we are in Memphis). My in-laws live in St. Louis, so that was the obvious choice. I begged the clinic appointment coordinator to get us in as soon as she could. When we met Dr. Wong, the head of the TS clinic in St. Louis, he put Greyson on Vigabatrin/Sabril immediately. For one entire year afterwards, we had seizure control with a combination dosage of Vigabatrin/Sabril and Topamax. After going through a huge amount of different medicine combinations, we had finally found one that worked. For that year, everything seemed like it might get better.

Then, out of the blue one day in 2010 at a therapy session, the seizures started again. They didn’t stop for two years. The seizures were intense and very frequent. Sometimes, Greyson momentarily stopped breathing and often fell and hit his head. Through all this time, Grey was getting farther and farther behind his developmental milestones. He didn’t crawl until 13 months, he didn’t walk until 21 months, and he didn’t talk until he was five. At this point, I feel I can’t stress enough how important it is to get your child into Early Intervention when he or she has TS. We scoffed at the idea at first because Grey wasn’t behind until he was close to a year old. But, looking back now I would advise any parent to go ahead and start it as soon as possible, since the TS diagnosis alone is enough for your child to automatically qualify for this free service.

In any case, after failing with ACTH, Phenobarbitol, Keppra, Sabril, and Topamax, Dr. Wong was ready to pronounce Greyson’s epilepsy intractable. So, we started to think about a surgery evaluation. Around this time, I noticed that the TS Alliance had designated LeBonheur in Memphis as a TS Clinic. I was thrilled to hear this! My husband made contact with them regarding the Tennessee Step Forward to Cure TS walkathon that I have chaired for the past few years and they offered to see Greyson and give us a second opinion.

This was the beginning of something amazing. Dr. Wheless, the head of the TS clinic in Memphis, and his staff at the Memphis clinic are miracle workers. I cannot say enough wonderful things about how much this man cares for his patients. One of the best things that a doctor can be is proactive and open to listening to patients and their parents. Dr. Wheless started us on the first of several medicine changes to see what would work. We went through combinations of Clobozam, Zonegran, Topamax, Depakote, and Onfi to no avail. He did more MRIs, multiple EEGs, an MEG, and a full surgical evaluation. That unfortunately told us that Grey was not a candidate for surgery, since a cluster of tubers were located in a dangerous area of the brain over the ear, where removing them could possibly do more cognitive damage than good. But Dr. Wheless stayed vigilant.

As a last resort of sorts, when Greyson was four Dr. Wheless suggested that we try Sabril again. By this time, Greyson was having several seizure types including complex partials and tonics, along with myoclonics, which were the worst offenders in his case. Dr. Wheless said that there was some research indicating that Sabril was working well for complex partial seizures once a patient gets to be a little older. But, TS had something in else in store for us.

The same week that Grey started taking Sabril again, he started to act like he was getting sick. We couldn’t figure out what was wrong with him because there were no outward symptoms except listlessness and extreme lethargy, and some bruising on his feet. I took him to his pediatrician and, bless her heart, she said “I don’t know what is wrong with him, but I know it is SOMETHING. I want you to take him to the ER right now.” That began the worst month of our lives and marked the second time that Greyson’s life was saved.

After numerous tests and several days in the hospital, the ER doctors found that his blood work had come back with severe Leukocytopenia, which means that his body was extremely low in white blood cells. So low, in fact, that he needed a plasma transfusion. Basically, if he would have fallen and hit his head (which he did frequently with seizures and hypotonia) he could have had a brain hemorrhage and died. Dr. Wheless and his team, along with the hematologist concluded that Greyson had gone toxic on his Depakote. He was on a high dose at the time and his body had lost its ability to produce white blood cells. This was after they scared us to death with the possibility of his having leukemia and talk of his potential transfer to St. Jude down the street. We had no choice but to stop Grey’s Depakote dosages cold turkey. Those of you who are epilepsy parents will understand that there is a reason that you wean off AEDs – you never quit cold turkey.

Once we got Greyson stable after the transfusion and his white blood cell count started to improve, we were able to check him out of the hospital after a week-long stay. Mysteriously, he didn’t seize one time during our stay. This was the first time in two years that he had been seizure-free that long. But the horror was really only just starting. As soon as they stopped the Depakote, Greyson began smiling and laughing again after what seemed like an eternity of being doped up and zoned out from all the medicines. Before we checked out, though, I noticed that he was hyper and not wanting to sleep.

He didn’t sleep for five days. Greyson had an experience akin to a drug addict going through withdrawal from heroin. He would scream and cry and want to be picked up and then want to be put down and he would try to climb you like a tree. He ate NOTHING for five solid days, he barely drank anything, and he lost so much weight. It was the absolute most difficult thing that I have ever been through, and it wasn’t even me who was going through it. It was like an alien had taken over my child. His body was literally vibrating. I have never been so scared in my life. No one could tell us what to expect or how long this detoxing process would take, so there was no light at the end of the tunnel. It is difficult to express how horrible this two-week period was on our entire family.

On the fifth or sixth day of this hell week, he finally had a popsicle. We all breathed a little sigh of relief that maybe things were getting better. And slowly, he started to want more popsicles and more drinks, acting more and more like himself. We went through three different drugs that week to get him to relax, including Valium, Klonopin, and Risperdone. The Risperdone was just as scary as the withdrawal symptoms, however, causing Grey to drool and seemingly hallucinate.

After almost two weeks of hell, his body adjusted to the change. We ended up putting him back on the Depakote at a non-therapeutic dose (less than half of what he was taking previously) just to help with behaviors. As soon as he got that first dose back in his system, he fell asleep. It was like the clouds opened up and we saw the light of heaven. He has not seized since.

That seizure-free period has now lasted for 21 months. Every day I think about the next time he will seize. I often have nightmares about it. It is a fear that will never leave your mind when you are a parent of an epileptic child. Any strange movement makes the hairs on the back of your neck stand up with alarm.

I am thankful, so thankful, that Greyson has had this respite from the continued seizures plaguing his mind, his growth, and his life. He has turned into a completely different child. He is a person who we feel we are meeting for the first time and we love every second of it. He still struggles with simple tasks like potty training, but the difference between Greyson at four and Greyson at six is 180 degrees. He began to talk at five years old, and he is now learning new words and phrases all the time.

What I want new TS parents to know is that there is hope. You should always follow your gut and keep pushing your doctors when you are not getting the answers you want and that you deserve. If your doctor will not be proactive and listen to you, then find another one.

I would also encourage TS parents to love your child today – not for what their future will bring, not for what they were before the seizures took over, not for what you imagined they would be – because none of us know what the future will bring. When Greyson was first diagnosed, my best friend said something to me that has stuck with me all this time. She said: “None of us are promised tomorrow. Tomorrow, my child might fall and hit her head on the stoop and be brain damaged.” And, however sinister a thought or remote a possibility that may be, in the end it’s true. We have to appreciate what we have right now, in this moment, because we really don’t know what tomorrow will bring.

Parenting, Tuberous Sclerosis

I despise mail order pharmacies.

November 19, 2013 Rebecca Gaunt 5 Comments

I had a full bottle when I started the process of refilling. Now I have this.

Really? I finally get Accredo out of my life, and now my insurance makes me get Onfi from mail order Optum Rx, even though it’s available locally. And what do they do? Take forever to process his upped dose on a new prescription and then just throw it on a UPS truck NOT OVERNIGHT, but 3-5 business days SIGNATURE REQUIRED, without coordinating a delivery date with me, all for it to be delivered two days after we run out. So here is my morning making phone calls coordinating getting an emergency supply. I DESPISE using mail order pharmacies. I started the process of his refill as we opened the current bottle. I thought an entire bottle of Onfi would provide sufficient time for a refill.

When I established on the phone this morning that the vague 3-5 business days would fall into the “too late” category I was transferred to someone who would help me get an emergency supply locally. Well, okay. I can deal with that. Until I realized that actually just meant I handle everything as usual and would have to do what I was already planning to do out of desperation. Call local CVS and beg for mercy. Call neuro and beg for emergency prescription to be sent over. Wait for everyone to coordinate everything and deal with initial insurance rejections and getting override codes.

Not to worry. CVS has assured me they will hook me up with emergency doses as needed because the prior approval needed to give me this “emergency” dose actually takes three days.

It sounds so pretty doesn’t it? Have your medication delivered right to your door! Don’t ever do it if you have a choice! My heart medication — the ones I’m going to need from all this in the future — will probably only be available through mail order.

To CVS Caremark Pharmacy that currently handles Connor’s vigabatrin: We have something special. Please, please don’t ever break up with me. My heart couldn’t take it. No, seriously. If you fail me, too, my heart might give out. I’m begging you to keep loving me.

On another note, I had a voicemail the other day from someone at Express Scripts in regards to my blog about Accredo. They are looking into the issues I shared. The day got away from me yesterday and I didn’t get a chance to call her back, but I appreciate that it is getting some attention there. I need to get some coffee and breakfast in my system to return the call. Oh, and Connor’s permission.

Accredo Pharmacy Problems, Tuberous Sclerosis

How is Accredo Pharmacy getting away with this?

November 12, 2013 Rebecca Gaunt 185 Comments

Update July 12, 2023: Hello frustrated patients. If you are reading this, a combination of a search engine and unmet pharmaceutical needs probably brought you here. A comment left on this post earlier today led me to log in and leave a brief update. It has been nearly 10 years since I wrote this post. I have not updated this blog since 2017. Yet this post still draws readers and commenters all these years later. It really hit me that a decade has passed, and little has changed. We haven’t been with Accredo steadily during that time, rather insurance plays those games where they kick you around trying to save a few bucks, not caring that every time we start over, so does the host of issues trying to get our shipments up and running.

But we always end up back at Accredo. Over and over. This time we have a point person assigned to help us. So being an asshole online for a decade does reap some benefits. We very much appreciate her assistance. You might think having an insider clears up all the issues. It does not. Accredo is simply that badly run. Turns out they can jerk people around on the inside as much as they do us (not her words, she’s very professional. That’s my interpretation of the situation when she sets up shipments and someone else cancels them. But anyway).

As I understand it, there is one or more patient-initiated class action lawsuits in the works as well as several states seeking legislation regarding problems with pharmacy benefit managers, mail order etc.

I hope something comes of it because I think we can all agree these companies have no desire to make changes independently. It’s never going to happen. I wish I felt more hopeful about the lawsuits and legislation, but fixing a broken system, state by state at that. Well, I’m a cynic.

At any rate, this post has at least helped people realize they aren’t alone. And I guess that’s something.

Becky

Update April 8, 2024: The above-mentioned point person went MIA on us and quit returning phone calls. She even had difficulty scheduling our shipments without some other department arbitrarily canceling them.

I have previously written about my issues getting my son’s vigabatrin from Accredo Pharmacy here, here and here. (Update: this message was left on my blog Hi – This is Jennifer Luddy from Express Scripts. We do care very much about our patients, and if you have a service concern, we want to make it right. Please send me an email atExpressRxHelp@express-scripts.com, and I will assist you.)

I was so frustrated that I started looking into whether there was some sort of governing body to report them to, but just as I did that, lo and behold, our insurance had us switch to the far more competent CVS Caremark mail order pharmacy, so I never pursued it. As best I can tell, this is where one might pursue a formal complaint since they are in Memphis. There is a tab to the left for complaints. If I am wrong, please let me know so I can update this information. Especially if you have ever actually done it.

So why am I writing about them when I have been blissfully saved from the hell of dealing with them? A couple reasons. 1. I frequent discussion groups for TSC and see how many people are fighting for their child’s vigabatrin, a medication that is absolutely essential in the fight against infantile spasms, a potentially catastrophic type of epilepsy. They have perfectly valid prescriptions, yet every month is a stressful nightmare of ineptitude. I’ve talked to MANY TSC parents going through the same thing. 2. In one of my previous blogs I complained about them and made a crack that I hoped everyone who ever Googled Accredo Pharmacy would find my blog. Well guess what? They do. I can often see the search terms that lead people to my blog and Accredo shows up all the time. And not just Accredo Pharmacy or Accredo Pharmacy Complaints, but sometimes even search terms like these:

Better business bureau? Evil? Couldn’t have said it better myself.

The other night I received an e-mail from a mom who has a child with another rare genetic disorder who was on hold with Accredo after nine days of battling to get her child’s medication after they had assured her four times that it would be shipped, but then it wasn’t. She wanted to know if I had ever come across anyone there that could help her. Sadly, the answer was no. The best I could tell her was to find out if the pharmaceutical company had a program to work with consumers, sort of like how patients on vigabatrin can call SHARE for assistance. They did have one and hopefully they will be able to help her, just as I relied on SHARE multiple times to sort things out when Accredo Pharmacy struggled with fulfilling their purpose as a…you know, a pharmacy.

[Update: SHARE assistance program no longer exists. Lundbeck discontinued when generics came on the market. You’re on your own, kid]

Also, the following are comments that have been left by people who have come across my blog by searching for Accredo:

Our son has TS. And I give all the Acreedo Calls to my husband. Bless him, I’ve only talked to them once and almost lost my religion.

wow…just found your blog. Accredo is pressing my buttons also. I am currently on hold to fill my medicine and have been waiting 1 hour and 20 mins and no one has checked on me for at least 30 mins and I have to refill every 6 weeks. If this happens again then I am going to stop using their service. Surely they are not the only specialty pharmacy out there.

Wow – I am so glad I found your blog. It makes me feel a little more sane! My son (20mos old) also has TSC and we were recently “upgraded” from Curascript to Accredo Pharmacy…it has been a nightmare. As I write this, I have been hung up on 5x this morning trying to get a supervisor so that my sons Vigabatrin can be refilled. I went through almost the same thing as you, getting a new authorization etc. and now, for some reason, the refill is in their system…but it hasn’t “processed” yet. It’s been there for 1 week and our last packet of sabril will be used tonight. I have been transferred to a “Supervisor” Alex 2 times, and everytime the “transfer” happens, the phone is disconnected. I am so mad right now, so reading your blog and writing this response has helped me vent a bit. LOL – I am honestly not sure what to do now….I am now on hold…again….and the person I just spoke with supposedly can’t find my son’s information in the computer…even though this wasn’t a problem the last 5 calls. Grrrrr! We are starting to ween off of this medication so hopefully I only have one more refill with this AWFUL pharmacy!!!!!

I actually just did a goodle search for Acreedo Pharmacy reviews because I am having so many issues with them at this very moment. For medivation that theu lost my prescription for and then wrote disreguard on it so it couldn’t be filled. Mean while for the last 2 weeks I have called and nobody knows anything about anything and nobody thinks its neccessary to call me about problems instead they just push them off like its not important. I have never had to deal with a pharmacy other than like a walmart or walgreens and I have had the absolute worst experience with them.

They have done me the same way with my ms medications. I now have trouble walking and I can’t work because of them not calling me and letting me know that there was an issue. They have destroyed a lot for me. Now that I know I am not the only one, something truly has to be done about this.

Hey, your blog is really cool, first. Second, you’ll be happy to know your post did come up in the Top 10 results for my Google search of “Accredo sucks.” I’m a nurse in a physician office, and I’ve been having nothing but problems with them since they took over every other mail order company in the world.

The following comments were left on my blog after I initially posted this entry. I am adding them here (and I continue to do so as they keep coming):

Haha I just did a search for Accredo…your blog came up. I have thyroid cancer, and I need two shots of thyrogen before I swallow radioactive iodine. Oct 30 I spoke with a rep, paid for it by cc, was told it would ship to my Dr. Office. Ok. This after a week of playing phone tag. Friday nov 8th my Dr office called me and said it had not arrived yet, but they had been in contact with Accredo and were told it was to artive that day. Today, Monday Nov 11th I get a call from Accredo just to verify that I orgered the drugs. They made it sound as if I had not done something to verify, or even complete the order, yet they had a credit for the amount to my account?? So now I am another week behind in getting my treatment. Yes Accredo SUCKS!!

Please oh please keep blogging on this issue. We have been with Curascript for vigabatrin and hadn’t had any issues, in fact, quite happy with them, until this year. (I hear they have finally merged with Accredo, yes, that was my heart stopping you heard) The last three months orders have all had issues, slow response times and finally, it happened, too late. Excuse after excuse, my favorite being that the order was held up due to ‘payment issues’ when our insurance company, without whimper of complaint or ‘prior auth’ pays 6500 dollars a month. How is this an issue and why does it fall on my son to pay the price for your ‘procedures’? So sick of the patient coming last. Considering offering chickens for payment like the old days so we can go back to doctor patient and family without this ridiculous ‘safety net’ between us all. Over it. Sing it Sister!!! Sing it loud!

I just Googled “Accredo reviews” and it led me to your blog, I have another tale of fury, they are the WORST. Don’t even know where to begin. Why isn’t there an alternative? Accredo just bought my old pharmacy, Curascript, who now look fantastic in comparison.

Wow! I’m having the same issue so I’ll put my complaint here in case others read your blog and comments. My 60 year-old, otherwise healthy husband has a GBM primary brain tumor and BCBS won’t let Duke Oncology Pharmacy fill the Temodar script that my husband needs to begin radiation on Tuesday. I called Accredo last night and set up the insurance information and got a script fax # for Duke to use. Well, then I called Accredo this morning to check up on things and THEY DIDN’T have him in the system AND…they told me that I’d been given the wrong fax#. This new person on the phone at 11am fills out everything and assures me all is okay. I call again at 4pm to make sure they have the script. No record of my husband! I had the Duke nurse call Accredo….the Duke pharmacist call Accredo…even the BCBS customer service rep call Accredo…no one on the other end of the phone had the Temodar script in the system for my husband even though Duke sent it over early this morning! So, BCBS tells me “I” have to be proactive and call Accredo tomorrow morning. If he’s still not in the system, call Accredo on Friday morning! BCBS assures me that Accredo will expedite and get me the drug on Saturday (but I have to be home…and, I’m supposed to go to the baby shower for my first grandchild). Anyway, BCBS told me if Accredo doesn’t have things straight on Friday, I can call BCBS and ask for a override so that Duke Pharmacy can fill the script. I’m so frustrated, worried sick…as if I don’t have enough stress with my husband’s inoperable, fast-growing cancer. (an FYI from Mixed Up Mommy: two times their screw ups messed up our Saturday because the emergency-begged-for-delivery that didn’t come when it was scheduled ended up falling on the weekend and they said we HAD to sign for it on Saturday even though we didn’t on weekdays. The third time it happened and we had to have a Saturday delivery, the rep said, “oh no, you don’t have to sign on Saturday. We can deliver it without.” What. The. F***. Why were my other two Saturdays ruined then? It was left on the porch).

Just want to register yet another horror story that echoes much of what has been said. I thought Curascript was bad until we were switched to Accredo. Spent about 10 hours on the phone over 8 days. Lovely people answer the phone but constant misinformation and dropped balls. I believe they have systems in place that discourage insured people from getting these medications. There is no way someone that is sick and does not have a committed care provider could navigate the roadblocks that are in place. In the end, they don’t ship the medication until they believe there is a crisis that may result in liability. I’m looking for a class action law firm or legislative office that will provide greater visibility as to this problem. I welcome any helpful input.

I have had the WORST experience with a company I have ever had, Accredo, over medication that I need on a daily basis. I am finding as many places as possible to complain about this negligent company. What horrifies me is that my while my condition is serious, there are far more conditions that rely on specialty script care, and to have this happen, just made me sick. I am changing insurance in 2014, and will have different options, but really I just want to get out of this company’s database.

Unfortunately, I have to deal with Accredo. I have been fighting for my three year olds medication (ILARIS) for 7 weeks. It’s extremely frustrating, every time I call, I am given the run around. I have been working with the ILARIS patient support and they now call Accredo everyday. They are now getting as frustrated as I am. The thing that hurts the most is that you are seeing how sick your child is, how bad they need the medication and there is nothing that you can do. It’s sad! I’m extremely exhausted, frustrated and pissed. My next stop is my local news station.

It is December 4… I have been battling accredo since oct 22 for my ms meds!!! This company is completely incompetent!!! Every call I’ve made they have yet another excuse on why my meds have not shipped! N now I’m out of meds … A med that ur body has to build up a tolerance to .. So now what??? This company is screwing up my health and they could give 2shits. All they say is “I’m sorry for ur inconvenience” … Really??? It’s more then a dam inconvenience when ur screwing up other people’s Heath!!! I hate this company! They r completely unless!!!!!!!!

Acredo is horrible!!! Been fighting for over a week….not only are they incompetent, but the staff there is completely disinterested in resolving issues. My sons been without his medicine for 3 days now…what a joke. If anyone has a contact name or number for someone that can get things resolved at ACREDO, please share!

I also had a problem dealing with Acredo. I would get a call saying call and set up shipment. When I called everything seemed fine, a delivery date was arranged, but no medicine ever came. When I called back I got excuse after excuse. Finally had blue cross set up a shipment. That never came either. Finally got a supervisor at blue cross through our benefits dept to call Acredo. After 5 confirmed no show shipments, one finally arrived. I can’t go through this every month. My suggestion is to call your insurance company after the first no show and let them deal with it. If insurance companies stop using Acredo they will go out of business.

I have Multiple Sclerosis and have recently had to switch from CVS Caremark (they were great) to Accredo per my insurance. It has been a nightmare! They have the worst customer service and most cumbersome refill process ever . I am currently WITHOUT meds even though I have been promised they would ship “the next day” for two weeks now. If you can avoid using this pharmacy do it!!!?

also just found this blog by Googling “Accredo pharmacy reviews.” I plan to file a complaint with my insurance company about them next week but have spent enough time on the phone in the past week! I discovered that my daughter’s RX was transferred to Accredo when I tried to log onto my Curascript account to schedule her RX delivery. I received no notification that the RX was transferred from Curascript to Accredo, or that her RX was overdue for refill (luckily, we had extra).

I never thought that a pharmacy could be worse than Curascript, but Accredo wins! I have not been able to set up an online account with Accredo, and their web support hung up on me yesterday (I’m probably supposed to believe that we just accidentally got disconnected). But, I have been told that we can’t schedule deliveries online anyway (which we did with Curascript). I stayed home last Friday waiting for a delivery that I scheduled by phone and, when it didn’t arrive, I was told it had never been placed. While setting it up for this past Tuesday, and I learned that our co-pay assistance program information had not been transferred from Curascript to Accredo. Each of my phone calls about getting the RX filled lasted about a half hour due to “unusually long” wait times. But, when I called their billing department, that line sure was picked up quickly!

UPDATE: After I let both our insurance company and our hospital know about how terrible Accredo was, my daughter’s RX was transferred to CVS Caremark and the hospital filed a formal complaint against Accredo.

I’ll be more specific about my story as well. I called to order my meds (for the first time dealing with Accredo). It went fine, the woman assured me that they would deliver 2 days later, noted my copay, etc. Delivery day came and went, no meds. The following day I called, was told I had been “missed by the system” and that they would arrange for Saturday delivery, which was the following day. Again, no meds. I called on Monday, and the agent said, “Did you even order this medication??” and “Ohhh, it says there’s an insurance problem.” I was put on hold for about 10 minutes, she came back and said I would have to call my insurance company, and that it was too late in the day (2 pm) anyway to arrange for delivery for the next day. I asked to speak to a supervisor and was put on hold for a half hour, after which I gave up. Not believing the “insurance company” excuse, I called Accredo the next day to try again and was scolded by the agent for “hanging up” the day before. At this point, I admit, I became belligerent–I was basically beside myself–and said, “Okay, tell me today’s reason why you can’t send me my medication.” And she did! Turns out 1 pm is the cutoff time for next-day shipping, which I need. So no meds for the following day, AND the agent denied there was any notation of an insurance problem. But she finally placed the order for me–in very slapdash style, not asking about a credit card for the copay, nor about the need for a signature on the package, nor verifying my address. I didn’t believe that she had actually placed the order, so I called back to confirm. I got my meds 10 days, I believe, after I was originally supposed to receive them.

These stories sounds very similar to my experiences so far with Accredo. I have Crohns’s disease and have to take a Cimiza shot once a month. Without it, I’ll land right back in the hospital. My information was supposedly transferred in October 2013 from CuraScript. I never received any notification of the merger so I called CuraScript on 10/31/13 for November’s refills and was transferred to Accredo. It’s been all downhill from there. The Patient Care Advocates are quite possibly the worst customer service reps I’ve EVER had to deal with. It’s now 12/16/13 and I have YET to get a prescription from Accredo. First it was an issue with my name, then they didn’t have my prescription on file, then we were back at the name thing, then it was an insurance issue. Honestly, I don’t even know what the issue is now. We haven’t even discussed my pharmacy card/payment yet…but I’m sure that will create yet another issue. Last month I had to get an emergency prescription from Walgreens. Now, I’m late taking my meds again this month and Walgreens is going to have to go to battle with my insurance company if I have to do another emergency refill. What’s really sad is that no one cares. The Representative I spoke with 3 phone calls ago SWORE to me that she would see this through resolution. She never called me back – that was last week (sad that I’m on call #3 in less than a week). Today the rep I spoke with said she’s involved the Pharmacy Supervisor, Monica, and promised me that she would call me before 7pm today. We’ll see. The Walgreens Pharmacist said they have had a ton of problems with Accredo and that Accredo won’t even call THEM back. How terrible is that? It blows my mind that this is their specialty/industry and they can’t get it right. They are messing with people’s wellbeing. Last time I went without meds I racked up $40K in medical bills. I wonder if Accredo is going to pay for that??? CuraScript has been filling my meds for 2+ years. It was rough at first with them but now, looking back, they seem like angels in comparison to Accredo. I’m doing all the research I can and am seeking any help/advise I can get. I don’t know where else to turn.

Yes, yes, yes, yes, yes. We were recently transferred over to Accredo by Express Scripts. Prior to the change, we had delivery on time every single month. As soon as the change was made, the difference was incredible…and not in a good way. In a jaw-droppingly inept way. I have spoken with 15 different representatives to schedule our deliveries and not ONE of them tells me the same thing. One month they completely SKIPPED our order! What I can’t understand is how they don’t understand how they are holding my child’s life hostage??? Last month I had to have Lundbeck three-way call with me into Accredo to demand next day shipment. This is completely unacceptable. I could go on about this for DAYS.

Accredo is the WORST “pharmacy” (use that term loosely) I’ve ever encountered in my 58 years. I’ve been online researching my options and trying to locate governing bodies, etc. and I came across so many patient complaints. I’ll add mine to the pile. Check out complaints on BBB (http://www.bbb.org/memphis/business-reviews/wholesalers-and-distributors/accredo-health-group-in-memphis-tn-15005188/complaints) – I’m going there next to submit to them my formal complaint; I also plan to contact our state insurance commissioner. I will let our employer know as well. In short, I have the same issues with the ‘specialty’ portion of the pharmacy…..for an injectable chemo drug that I use every week (yes, it happens to be expensive … hummmm are they denying and lingering because of their bottom line ???) I never had problems with Medco/BCBS; then it changed to Express Scripts thru United HealthScare…absolutely unacceptable and worse, that they continue to get away with this. File a complaint with Better Business Bureau (BBB) please ! I”m on hold with Accredo – my 6th call this morning, trying to get my medication that was supposed to be here last Thurs ……….. are we in a 3rd world country now ?? I will check back in later when I have more time. God bless you all –

Thank you! I wanted to provide a quick update that might help some other folks out. Yesterday my Doctor’s nurse contacted their Cimzia Rep (Cimzia is the meds I take) and he is getting his company involved in this. I also contacted my company’s Benefits Administrator and she contacted our BCBS Account Manager, who then escalated this even higher. While it hasn’t been resolved, I am starting to get the help/attention I need for the first time in almost 2 months. Maybe others can escalate this as well and get the help they need. If nothing else, I know have a team of people on my side to help me through this as I move along. Before I felt like I had no one on my side – and that’s a terrible feeling.

My wife is on chemotherapy. She started getting her prescriptions from Accredo last month. Last month her chemotherapy was two weeks late! This month, it will be three days late. When they called today, they had the nerve to blame the snow storm in Massachusetts for the delay. They are located in Tennessee!! I just called HPHC and left a message. This has to be illegal.

Accredo must die for light and hope to return to the world. Ever since we too were “upgraded” from Curascripts, we have had many of the same problems already posted here. They call the wrong number and don’t speak to your doctor and use that as an excuse not to send the meds you need. The “customer service” reps and supervisors are incompetent and seemingly proud of it. They refuse to take any initiative to try and help you when your child needs important medication. The only reason they can stay in business is because they know if your insurance company has contracted with them, they have you over a barrel.

OMG!!! I was on the verge of tears and then I googled Accredo to see if they were doing this to other people. Why does this have to be so difficult. I see that you have had some success in making your experience known to your insurance company and I will be doing the same thing. As of today, my daughter is 9 days late for a medication (shot) that she is supposed to take every 28 days. Every month I get phone calls asking me how I plan to pay even though I have established the payment. Then I get recorded calls that tell me the shipment is being filled and on the way. Then nothing happens until I have to track down what is going on because the shot was not sent to the doctor’s office.

Please, someone tell me how to get a hold of the “Big Wigs” at this horrible company! They bought out Carascript (CS), and called me to send me my meds. I did not need them at the time and was told to call when I did in fact need the order. I did just that, I called Monday. They said my script was voided for non-payment (I have never ordered from them), so they blamed CS. I asked them for my said balance, it came back “0”. They said we will restart it, call back in 24-48hrs. It is now Thursday, still has not been handle. I did my own work and had my Doctor call today. Once I called the Accrapdo back they are telling me that it is in process and will take another 24-48hrs. This will leave me with out pills for over five days…I received a Kidney from my brother 6 years ago. You are not to go one day and day two starts the rejection phase (Not always but should not be tested). Lastly I asked them for an over-ride to the local pharmacy and they can’t full fill that either. So, I ask you; “How is Accredo Pharmacy Getting Away With This.”

Accredo is a nightmare. They don’t belong in the business of filling essential, high-end prescriptions. The problem can be summed up by they are inept and/or “give up” at handling or following up any issue no matter how simple that causes the otherwise “happy path” of filling a prescription to fail. My prescription for Enbrel was originally faxed (and confirmed) with Accredo Dec 4th, 2013. Accredo “lost” it and it had to be re-faxed Dec. 18th. After the 18th I called every business day except Christmas (logging hours of phone time) and was repeatedly told the prescription was held-up due to “clinical issues” and that I didn’t need to worry because someone would call me as soon as it was ready to ship. On Dec 27th someone at Accredo finally “properly” identified the problem as missing co-pay information, which I found unbelievable as it had already been provided to them with the prescription and again since then. The prescription shipped Jan. 2nd (after I had stressed all along that I needed it filled under 2013 insurance). On Jan. 13th my ability to place other orders with Express-Scripts was blocked because the co-pay had still not been properly processed by Accredo.

Oh my goodness! I really hate seeing that everyone is having all these problems, but it makes me feel less alone! My son has a grocery list of health problems and one requires a specialty medication. OUr insurance carrier requires that we use Accredo (which recently bought out our much better more competent company) I have been struggling for a FULL MONTH to get his prescription filled. (Still no joy). I have called every day, my doctor has called and my insurance company is now involved. The standard answer I received was “your prescription is in process” or “we should contact you withing 24 to 72 hours”. Fortunately, we may be able to get the prescription filled through CVS until Accredo can “catch-up”, but we have no choice but to stay with them. You can work with your insurance companies, if you haven;t been able to get your prescription filled within 72 hours of the date your MUST have it filled call them and you can(maybe) have them send a prescription to your pharmacy as a stop-gap measure. Good Luck!

We switched to Accredo last year (2013) in Jan and have had nothing but problems. My daughter is on Humatrope, which she has required almost since birth. For 21 yrs we have dealt with other specialty pharmacies without even a small fraction of the problems we have had w/ Accredo. (Pronetics was the absolute best!!!!!! See more below.) I am a physician and I have NO IDEA HOW ACCREDO is allowed to continue its incompetence, when it is adversely affecting so many people. I believe it will take one of two things: 1). A large news show (e.g. 60 Minutes) looking into Accredo’s substandard business practices. or 2). An actual congressional investigation.!!!! I seriously wonder how many people (children) have died as a result of Accredo’s lack of caring, no compassion, and phenomenal incompetence. ONE THING FOR CERTAIN… NO ONE WHO WORKS AT ACCREDO HAS ANY LOVED ONE WHO NEEDS MEDICATION THAT IS DISPENSED BY THEM !!!!!! Maybe there will be some poetic justice and someone near the TOP at ACCREDO will have a child or grandchild born with a serious illness requiring specialty medication. MAYBE THEN…. JUST MAYBE, someone will seem to give a damn. Until then, I suppose corporate profits, lack of intelligence, and/or sheer unadulterated stupidity will continue to rule the day at ACCREDO. The problems I have had are almost exactly the same as so many of the comments above. If anyone is interested, I’ll be happy recount my sorrows, frustrations, and infuriating hours spent dealing with ACCREDO, too. If anyone who has had severely adverse circumstances caused by the delay of their loved one’s medications, I strongly suggest you file a lawsuit. I will venture to say there are probably 100′s and 100′s of people who might be brought into a class-action case against Accredo. This kind of lack of ability to properly handle medications as important as these, should NOT be allowed to be handled by such CRETINS. It is CRIMINAL what they have been able to do. In fact, i wouldn’t be surprised if the name ACCREDO comes from the base-root CRETIN somehow. I am so sorry to hear there are so many other individuals who are suffering in the same way due to this company’s lack of competence, proper leadership, and concern. Doctor Steve

This Company is CRIMINAL is they way there are running this pharmacy, putting patients lifes in danger, My script has been lost in a Black hole since Dec 23 2013 and its Ground Hog day with them everyday, I Call. Glad I found your blog I thought it was just me. I get this same response from them we are processing it will call you. or it’s being processed. I think the stock holders need to have a light shined on the way this company is being run.

I just had my first contact with Accredo yesterday. Our insurance now requires us to fill prescriptions of Remicade with Accredo. I called Accredo to try to find out how their system works: how they receive prescriptions, turn around time, what’s in the shipment, cost, paperwork needed, etc. I got hung up on 5 times. I thought I was just having a bad day, but after reading of the experiences of others, I am now warned, and ARMED. My insurance company will be receiving my complaints and a copy of this blog. Thanks you so much for complaining. To have a company that provides life-saving medication be so incompetent and rude is beyond excuse.

Accredo is the worst. There.are.no.words.to.express.how.absolutely.horrible.they.are. They are mostly quite nice to speak with (the customer service reps) -and yet they’re completely and utterly inept (it may be a technology/database issue). We repeatedly have to call to get Rxs filled, they frequently ‘lose’ my husbands information, prescriptions, etc. My husband has TRIED to pay them for copays he owes them for 2013- but they can’t find record of any invoices! This past week he tried to call them to make sure they received the 90 day Rx, and the agent was surprised that he was calling about a refill because there was no record of any previous shipments. (He has received multiple shipments already!! )The agent actually told him that if a new Rx gets sent in, it is probably best to call right away to have an urgent request put in to ‘find’ the new Rx so that they can start processing it. The place is messed up beyond belief and their management/resolution teams refuse to acknowledge that there have been issues in the past, or provide any clarity as to why it has happened it or what they will do to fix the issues. And, as a side effect, they will put small trustworthy pharmacies out of business. How inane.

I have experienced every one of these complaints and then some with Accredo. My issues started in May and I have not had one smooth transaction since. With the amount of time and anguish I have spent with this company I should be compensated for doing their job for them! It is so frustrating to read these stories and though missing my doses of medication is not life threatening, is sets my condition back months and even then, I can’t get back to 100% remission. Something needs to be done with this company. I have researched and researched and I can’t find any evidence of someone taking this to the legal level. So until that happens, I will continue to spend countless hours and days dealing with this inept company.

Accredo = Ah-GREED-O….Greedy corporate, non-performaning, completely apologetic, totally pathetic, constant calling, constant ordering, constant canceling, spoc appointing, overcharging, incurrent billing pharmacy EVER!!! It all started in Sept 2013!

ACCREDO is a nightmare! I am a nurse and have a husband and son who require medicaitons from a speciatly pharmacy. We changed insurance companys on January 1st and I have been fighting for our meds almost daily. I have provided all information needed to them including credit card for billing yet they have every excuse to not fill our meds.
It is now the weekend and my husband is out of medication. His medication like many other medicaitons requires daily doses not to be missed without risk of severe side-effects. I spoke with a Pharmacist on friday evening regarding the doses my husband would be missing over the next 4-5 days. He advised me that we need not worry becasue the medication does not clear the body for atleast 128 hours, although I pointed out not at therapuetic levels, to which he agreed! My husband has a mutated version of his disease and is at increased risk of severe complications. The pharmacist agreed that this medicaiton was especially impmortant for him but there is nothing they can do. Within one hour of speaking with the pharmacist I received a phone call requesting $1000 payment to proceed. We were told emergency shipment would then be setup with earliest delivery by Wednesday! This was after weeks of phone calls and 4 phone calls throughout the day begging and screaming at them. My orginal request for refill was 1/9/14 and we are hoping to have his meds by 1/29/14, which I doubt will happen!
This is going to be a long year dealing with ACCREDO!

I want to start a class action lawsuit with Acreedo pharmacy and maybe even Express Scripts for even using them as their ONLY specialty pharmacy. They are an awful specialty pharmacy that is responsible for sending my son his very important medication. Since they became my son’s pharmacy for this med it has been nothing but trouble. The people are incompetent and no one knows why anything happens. I have searched a few sites on google and I find several of the same complaints and even people asking about attorneys they can use. I think it will be very lucrative for you if you start this class action and I as well as i’m sure plenty others want to be named as the victims in this suit. My son is 7 and he needs his meds but every month now he is getting less and less treatments due to clerical and unexplainable errors and it’s not just me and my family, it’s the families of many others please help me in getting this done as I feel they should either get there act together or close as a business because I feel this is a malpractice. This is the message I placed on Morgan and Morgan’s website. HE is a class action attorney in Memphis, TN. I’m sure they will call soon and I am grateful of you starting this blog to let me and my son’s father know we are not alone in the struggle just to get a prescription filled. Join in me and i’m sure soon to be many others in stopping this soory excuse for a specialty pharmacy before someone gets hurt.

Accredo is horrible. I am in the process of having our sons prescription taken away from Accredo and moved to a more reliable pharmacy. Our son had a liver transplant Oct, 2013. The previous pharmacies were wonderful! However, once I changed to BCBS, I was told we HAD to use Accredo even though all of the other medications go through the previous specialty pharmacy.
On 1/3/2014 I placed our 1st order. It is now 1/31 and we have YET to receive the medication he is going to need for the rest of his life! I have placed the same order 5 times and each time our request is cancelled for one reason or another. I was finally told today (by their own employee!!) that they keep a limited supply of the syrup needed to make his medication. Can someone PLEASE tell me why we are being MADE to use a pharmacy that does not even carry his medication on a regular basis??? This is crazy!
Today I have spent 3 hours on the phone with BCBS, Express Scripts and Accredo at the same time. Express Scripts kept BCBS and I on hold and never came back. After an hour, BCBS suggested we call the State, which is exactly what we did. It is now with The State Benefit Plan. In the meantime, we are writing letters to the BBB, the president of each company, the attorney general and The Department of Health. Next is the news!

WOW!!! I am not alone in this madness! But I am to the point of going postal on these ignorant, incompetent idiots! Does Accredo (Memphis) really have that much trouble hiring qualified individuals? or are they so cheap, that’s the only type of employees they can get? My husband has Hep-C, and the medications were ordered the first week of January. His prescriptions are for Sovaldi, Ribospher and Pegasys. I went through the process of getting financial assistance through McKesson for the Sovaldi, and the PAN Foundation for the Pegasys, and have given Accredo their billing information ATLEAST 10 times. The orders were finally shipped on January 22, it took 3 weeks for them to fill the prescriptions because of constant screw ups. I made countless calls, spending countless hours of hell with them just to get the meds, then they switched the billing information, so now my account shows a $4700 balance that has not been paid, therefore, we cannot receive ANY prescriptions until they pull their heads out of their behinds and get it right!!!! I called AGAIN this morning after giving them the billing information AGAIN two days ago, and the balance is still there. I spoke to someone here in Arizona this time, she was very helpful, and said she would take ownership of the issue, present it to a supervisor, who hopefully is as considerate, and gets it done right!!!! Great customer service is a thing of the past, funny, because this is supposed to be a time when it’s all about great customer service.

I appreciate you posting Jennifer Luddy’s email address. I sent her an email when I was at my wit’s end and received a call from Express Script’s customer department. The man’s name was Owen and he was very compassionate. He took a great deal of time walking me through the various phone calls which were logged into his computer. Out of that discussion SEVERAL poor practices on the part of Accredo came to light. It became extremely clear to me that whoever put the public interactive practices in place at Accredo has ABSOLUTELY NO CLUE ABOUT PEOPLE OR THE WAY THAT THEY LIVE IN THE 21st Century—or even the 20th Century, for that matter. From Robo calls that do not allow one to speak to a human being, but automatically connect you to a queue, waiting for a representative, WITHOUT EVEN IDENTIFYING THE NAME OF THE COMPANY OR THE REASON FOR THE CALL!!!!, to placing 4 such robo calls in a month (again no human to human interaction) before deciding that the client must not want to medication or has gone elsewhere for it—-are shear insanity. Who in the world these days is not busy and sits day after day by the phone waiting for an anonymous call to come in, which automatically puts them in a queue, often making them wait for 10 to 15 minutes or more before they even know who is calling???? Maybe if you are disabled or unemployed or are independently wealthy and sit around with nothing to do or occupy your life! And, if you hang up, because you are at work, or don’t even know who is calling, the computer logs that as the costumer did not want to talk about their medication needs. I was finally told that I could get some one on one service, like I have been used to from other specialty pharmacies over the past 20 yrs of ordering my daughter’s medication. However, when contacted by that person who was supposed to be available to help me order the meds, I was told that she would only be able to do so ONE TIME, with the next order. (Other companies had assigned us a personal rep who knew the status of our meds, needles, alcohol swabs, etc. and called, left voice mail messages and were EVEN AVAILABLE TO SPEAK ONE TO ONE, and had extensions and voice mail themselves!!!) This ONE TIME helper gave us a phone number and an extension, too… But, when we tried to use it, it took us to another queue, where we were not able to talk to the rep in question.!!!! I call that slight of hand. A shell game. Tell the customer what they want to hear and don’t change a thing. And, the robo calls? We were told they can’t be stopped. We would just have to ignore them while our personal rep helped us (for one month) HA! When we tried to get the medication first we were told it would be shipped on a given date. When that date came and went without us getting a call, we were told it was held and the shipping order cancelled because a deductible was owed. When a credit card was given, we were told the med would ship right away. But, when the day came and went again (w/o a call from Accredo), it turned out it was cancelled again bec a new prior authorization was needed. When the doctor’s office called us again WITH ACCREDO on the line, Accredo would not approve the PA because they had a different zip code than the doctor’s office. This was the same zip code problem which had been discussed and supposedly rectified a MONTH BEFORE. Again promises came and went. (This is just a part of the insanity that went on in Dec 2013 and Jan 2014. Luckily I called my insurance benefits administrator, who connected me with the company contracted to administer our pharmacy benefits. I was told that I did not HAVE TO USE ACCREDO!!!!! That my policy allowed me to use ANY SPECIALTY PHARMACY that was in network…and there were hundreds! IT WAS A GOD-SEND. We are in the process of changing back to the specialty pharmacy we have used for close to 20 yrs. They know what customer service is. They know how to run a company. ACCREDO needs to be shut down. It is an abomination to the world of specialty medication. And, btw, Owen, if you should ever read this, take my advice CHANGE TO ANOTHER COMPANY!!!! Your customer service talents are being wasted. Accredo has no business being in business. There are NOTHING BUT A BUNCH OF IDIOTS WORKING THERE. As for other parents and patients having to ENDURE THE INEFFICIENCIES and INEPTITUDE of ACCREDO. Do yourselves a favor. Check with your benefits department. You MAY NOT actually have to subject yourself to this torture. You may be able to chose any specialty pharmacy you wish. CAN YOU IMAGINE SUCH A BURDEN LIFTED OFF YOUR SHOULDERS! For us it is like dying and going to heaven. Hopefully, ACCREDO will be shut down one day by govt regulatory agencies, or perhaps in his benevolence God himself will send a bolt of lightening down and torch the whole damn organization!!!!!!!

I have an aggressive for of rheumatoid arthritis and need a daily shot just to be able to walk in the afternoon. They apparently have 3 accounts in my name, and my prescriptions are getting lost between the three accounts. Not only that, but my prescription is for a 90 day supply but they only ever send 30 day supplies so every couple of weeks i have to play phone tag with them for an entire week, my doctor office as well can’t get a hold of them and 3 months ago they knew about my 3 accounts and the situation has yet to be resolved….Can accredo be held accountable for lost days of work because of their ineptitude to fill prescriptions in a timely manner? They have caused undue stress in my life that is inexcusable… It is a crime that these people are failing in their responsibility to the people that rely on them so much….

Dealing with Curascript & Accredo over the past 2 months has been an ABSOLUTE NIGHTMARE for me. I am a 28 year old male with Psoriatic Arthritis. I have Anthem Blue Cross/Blue Shield through my job, and have had the insurance for at least a few years now. I was on the medicine last year, but decided to take a break due to the serious side-effects. Recently my arthritis & psoriasis has gotten a lot worse, so I decided to go back on the medicine. Here’s a breakdown of what has happened to me over the past 8 weeks:

– Anthem told me ExpressScripts would be my new pharmacy. I previously had Curascript
– Called Express, they told me that they are “still migrating” old customers to the new system.. so I had to still deal with Curascript
– Curascript gave me the run-around for approx. 6 weeks.. told me they needed to get prior auth, told me they didn’t receive the script (despite having a copy from my doctor’s office 1/24), told me it would take over a week to “process”, etc. Promised me they would expedite, blah blah. Finally about 3 weeks ago they told me that I need to deal with Accredo! (Huh?! 1st time I had ever heard the name.)- Dealing with Accredo has been even worse. First they told me they couldn’t use the script from CuraScript, they needed a new one. Then they told me that actually could see/get my info from Cura, but there was no record of any communication, no notes, and NO prescription – I’ve been constantly disrespected and lied to. One rep told me he would look into my problem, put me on hold for 15 minutes.. then PUT ME BACK INTO THE CALL QUEUE!- Another supervisor named “Consuela” told me she’d reach out to my doctor’s office for the Rx and personally assist me. Lo and behold.. she gave me a SIX-DIGIT extension when their system only uses FIVE digits!!- And they LOVE to play the ping-pong game.. they are constantly blaming errors or issues on their “system”, the other company, their multiple call centers, etc, etc. They pretend to be so nice, but I think they must just deal with complaints all day long…- Today (2/20) I was told I needed to DEAL WITH CURASCRIPT! I blew a gasket and asked, yet again, for another supervisor. Like magic, a new excuse has entered the fold: Now I’ve been told that the issue is that I need a new prior authorization because, get this, it expired yesterday for me. I got another supervisor’s name and a brand new set of numbers to confuse my doctor and probably further delay the delivery of my script. For reference, I started this process in late December. I am so, so, so frustrated right now. To the point of tears. I am tired and sore from my condition and my psoriasis has been spreading all over my scalp and my nails. I am tired of feeling like crap and looking gross. These people pretend to have sympathy over the phone, but they’re all heartless. They should be ashamed how they run their business.. they have ZERO compassion and are grossly incompetent. Their negligence is going to end up seriously injuring (or worse..) someone some day, and I hope they get sued for all the money in the world. They don’t deserve to be anywhere NEAR the medical profession, period. No one should have to suffer like this, I’m just thankful that my condition isn’t life-threatening…. (sorry for my massive rant, and MUCH sympathy to everyone else suffering)

I am SO happy to have found your blog (thank you so very much for providing this forum for us), but also horrified that SO many people are encountering the same issues with Accredo Specialty Pharmacy and yet they somehow stay in business? I have to use Accredo Specialty Pharmacy for my Cimzia prescription which I take for my rheumatoid arthritis. It is not life-threatening if I receive my meds on time or not (like some others that have commented) but I am also undergoing IVF for fertility issues, and keeping my RA under control during the IVF cycle is a critical component to the outcome of the IVF treatment. It’s extra important to have the RA well controlled during the period of time following the embryo transfer. Well, during my last IVF cycle Accredo Specialty Pharmacy screwed up the delivery and it arrived almost 2 weeks late and meant that I was not properly medicated during the post-embryo transfer phase. Although I initially had a positive pregnancy test, I very soon after had a miscarriage and obviously there’s a part of me that wonders if I had been properly medicated would the pregnancy have stuck. Now we’re on our second round of IVF and had the embryo transfer last week. I am due for my next Cimzia shot this weekend and, after an hour and 15 minutes on the phone with Accredo Specialty Pharmacy, I learned that I “may or may not” receive my medication this weekend. The extra frustrating part about this is because I had the issues with Accredo Specialty Pharmacy not delivering my medication on time during my last IVF cycle, and not wanting to risk not receiving my dose on time this time, I started calling Accredo Specialty Pharmacy 3 weeks in advance of when my next shot was due. Yet, somehow I’m still at risk of not receiving it on time, and based on the incompetence they’ve demonstrated so far, I am not confident it’s going to arrive on time, which will again put another IVF cycle at risk. Thank you Accredo Specialty Pharmacy for making an already stressful time in my life extra specially stressful. You guys are special.

Wow, I’m not surprised there are this many bad reviews. I too googled “accredo reviews” in hope that I wasn’t the only one that felt this way. My stories would take up this entire page so I’ll spare you but just today they delivered the wrong medication to me (after having to call me again because ups couldn’t deliver it to me at first because they didn’t give them my apartment number even thought we ALL know that they ask you over and over and over what your address is to confirm….dumb) and just last week someone from Accredo told me “yea, I really don’t know how to help you, let me pass you back to Express Scripts”…and then having the woman at Express Scripts LAUGH at me on the phone after I expressed how horrible their company was set up that they can’t see Accredo and Accredo can’t see Express Scripts and no one knows how to help me and for someone who is battling with a lifelong disease, you are making it impossible for me to get the drugs I need to survive….yes, she laughed at that.

Just today found your blog and this forum. We have fought with Accredo/Express Scripts for years. Fortunately for my husband, his meds are for psoriasis and not a life threatening disease. However, the stress of fighting for your meds month after month makes any disease worse. We spent the winter months in Texas at our daughter’s home to avoid the horrible Ohio winter. Both January and February shipments arrived at her house on time. When we ordered the March shipment, my husband made it very plain that it was to go to our home in Ohio, NOT our daughter’s home in Texas. Guess what? The meds went to Texas! That was last Wednesday and today is Saturday. They are still “looking into it.” We’ve been on the phone to them 3 different times, each time turned over to a supervisor who tells us there is nothing they can do until they assess who is to blame. We should have had our daughter ship them to us, but foolishly thought Express Scripts would take care of the issue.
Also we receive assistance from Enbrel Support and each month they say they can’t ship our next order because our bill hasn’t been paid. When we ask if they billed Enbrel support as we asked them to do, they do so and we have to wait again for the shipment. How on earth can a business run this way? Especially one involving medications! If anyone finds a solution please let us all know!

Sadly, it appears the only “solution” to the problem of Accredo pharmacy and it’s incredible ineptitude in business will be to put the purchasing power back into the hands of the consumer. When the people who are receiving the medications are the ones deciding where they are going to go for their business, Accredo’s doors will close so fast it will make the executive’s head’s spin!! —Until then, the only thing that you can try is to talk to your Benefits Administrator and tell them how unhappy you are. Many people are finding–like me–that “specialty” pharmacies are secondary to their insurance plan’s assigned or required pharmacy. You may have a large choice of specialty pharmacies available to you. I am still of the belief that no company wants to pay large amounts of money for health benefits only to have their employees forced to deal with total imbeciles like those who work and manage Accredo. If they can do so, they will give you another option. And, if enough people complain, Benefits Administrators all over the country will put a stop to Accredo’s ability to magnify the pain of disease by not giving a damn about the people behind the medications. The ONLY way to stop ACCREDO is the old fashioned way capitalism used to work: “If you give poor service; if your workers don’t know what they’re doing; if no one department at your company has any idea what the other departments are doing; if you are not set up to be helpful, accommodating, personable, or user friendly, your business fails !!!”
Thankfully, our family was given a choice. We now work with a specialty pharmacy that is wonderful. I hope you and others will be able to do the same. —One day I suspect Accredo will be studied at business schools across the world as the ANTITHESIS of how a GOOD business should be run. After all, the fact Accredo ever existed should be of some benefit to someone on earth! (I am an optimist…what can I say?)

I am very disturbed by what I have read here. Have most of these problems started when Express Scripts took over MedCo?? I was scared that they would screw Accredo up when they took over. I have been getting my daughters growth hormone for years from them and have had no problems. I had to deal with CuraScripts previously which is Express Scripts specialty pharmacy. They were a nightmare. I am currently starting to see issues with Accredo. They constantly tell me that my daughter’s doctor has not sent in a new script when I need to order. I know that this is not true because her doctor employs someone full time to take care of the patients scripts with the pharmacies.

I have had so many problems with Accredo as well! I am so glad to know that it is not just me! I just want to bang my head against the wall every time I call them (because we all know they NEVER call to let us know there is problem). I don’t know how it can possibly be so hard to fill and ship a prescription.

I too sent an email to Jennifer Luddy. After a few days she emailed me to ask for an ID number and contact phone number which I sent. We never heard from her again. Two days ago (1 week after being told someone would call us back in 24-48 hours!) we called for the fourth time. This time we got a very polite lady named Amanda W. who was properly horrified by our recent experience. She spent 40 minutes on the phone with us and finally got things straightened out. She kept apologizing for everything that has happened over the past week, but was really not in a position to do more about the problem. We should have the meds soon, but by then my husband will have missed 2 doses of his once per week requirement. I guess our next step is to contact our insurance company to ask if we can use another pharmacy.

Google led me here. It is nice to know I am not crazy or overly hyper in thinking Accredo sucks. They just don’t know thier ass from thier elbow. Theyve lost my script, forgot to send it as well. I had given them my info at least 4 times and they say it still isnt correct. Are thry frikkin playing candy crush while they are on the phone with cusomers? Sorry. I had a copay free program before my script got moved over to them, and now I don’t. I have nothing complimentary to say.

I also found this via google. I have crohn’s disease and was just placed on Humira. Our insurance company told us that Accredo was our specialty pharmacy, so we called and everything seemed to be in their system no problem. Since I’m currently fairly ill my file was marked urgent and they told me that my medicine should be ready to ship in three to five days. Two weeks later we finally had to call them. They told us that they had only gotten a prescription for my maintenance dose, not the loading dose and didn’t have prior approval from my doctor. The original prescription is just for a loading dose. So I had my doctor call them and get everything authorized and they told me that they would be calling me the next day (Friday) to arrange a shipping time. Well, the following Tuesday we called again. It turns out Accredo had voided my prescription because they hadn’t gotten the prior approval from my doctor. It has been over two weeks, I am so sick I can’t leave the house, and it has been so ridiculous that we’re switching to a different pharmacy!

I have been in Accredo Hell for 3 years. This is what i have learned. Everyone needs to contact a reporter to get this out in the public. Look on line for any consumer reporter with USA TODAY, Wall Street Journal, and major publication.
Email Brian Henry- bhenry@express-scripts.com and let him know enough is enough and we are all going to be emailing reporters.
Call presidents number and leave a voice mail- you will never get a human being.
1-800-871-4663.
This has got to stop.

I have never in my life seen so many complaints on one company!! I am rapidly losing confidence in Accredo. If they screw up the shipment of my Hizentra Shipment one more time – I have told them today that I will be writing to the BBB and to my immunologist. I will also notify medicare as they pay for it. I do not need to return home and see the box sitting on the front porch in the sunshine – it is HOT here in AZ and I do not care how ,many icepacks they need to deliver to back door, and knock and get my bsignature. All of these directions appear on the list of supplies inside the box. Unfortunately UPS does not have x-ray vision. When the supplies were ordered I said, twice, put these directions on the mailing label, and into the mailing address so that UPS will deliver the shipment as requested and to also pay attention to the date delivery is to be made. THEY DO NOT PAY ATTENTION. IT IS IN ONE EAR AND OUT THE OTHER IN THE CUSTOMER SERVICE DEPT. People like this work for the VA – where a sense of caring is minimal. I suggest they go there. They will fit in nicely. I am dealing with a forest fire, out of control and approx. 20 miles away. I am trying to recover from pneumonia. I do not need to be bothered by Accredo’s goof-ups. They will get my complaint in writing – as well as a phone call. And as many times as necessary. If there is another screw-up by customer service [why don’t they call it Customer Neglect?} I will do my best to get my prescription sent to another company. Hang in there folks and write those letters. Dottie in AZ

I too am on MS medication. I switched insurance to Anthem BCBS and their specialty pharm is Accredo. Accredo refused to acknowledge my existing prescription. I even had US Biogen fax over, and my prior specialy pharm fax over. Accredo would not accept, I HAD to get a new prescriptioin from my doctor they said. Well, good luck getting a fast appointment with a neurologist. Anyway, within a week I saw my Dr. and got the new prescription. Now I am waiting for “prior authorization” before they can fill my prescription. Do these people realize, we are on only a 30 day supply. I have now run out of my medication because of Accredo playing games with MY HEALTH. This is not right.

I can’t believe I just found your page. I was in Accredo hell for about a year and I just stop using its service and my medicine. I have written everyone including my Senator to no avail and its as if no one cares either. I am so sorry this has happened to everyone because I know many of you can’t stop taking your medicine. I am somewhat comforted in knowing I am not alone. I have felt so alone in this. Thank you for your post!! Hi all.

I am also having problems with them to. My sons meds were suppose to be delivered last weds.They never showed up.He had his last shot that day .called them Thurs. I was told my insurance doesn’t cover it anymore.They couldn’t even contact me Weds. to let me know.Now it is a week later and he still doesn’t have his meds. I have called them everyday and keep getting the run a round.My son takes other meds. If he doesn’t have one his levels are off. He can have a grand mall seizure which could kill him .I have express this to them and they say WE CARE no they don’t. If anyone can direct me to another phramacy I would be very thankful. Someone please help me.

I’m an RN working in an outpatient department in a hospital who (along with one of my patients) finally got fed up with the HORRIBLE service at Accredo. Every month we’d get the run around when trying to reorder Xolair, and countless times the patient would not get her 28 day injections at the 28-day mark. Well today I almost cried tears of joy when I called to let them know we would no longer need their services, I can now order the medication elsewhere. In 25 years I have never dealt with anyone in healthcare who cared LESS about patients than Accredo Pharmacy.

I’m glad I found this blog. I was wondering if it was just me but I can see this is a clear pattern of poor services from this company. For those using Accredo that have insurance through Anthem Blue Cross/Blue Shield, I’ve created a Change.org petition asking Anthem to either drop Accredo or provide customers with an alternative choice. https://www.change.org/p/blue-cross-blue-shield-drop-accredo-express-scripts-for-specialty-drugs-or-provide-customers-an-alternate-choice-for-filling-medications

Accredo is the worst mail order pharmacy I have ever dealt with. Everyone seems to be on a different page and operating under their own set of procedures and policies. Everytime I call to get my prescription filled, I am told something different and inconsistent with what I was told by the last representative. It takes at least 45 minutes to an hour to place my order or even answer a simple question. There seems to be a lot of confusion and incompetence among the staff and I dread dealing with them each month. They are, indeed, a nightmare! Luckily I am only on a six month treatment so I will not have to deal with them much longer. I feel for others who do. I will look into another pharmacy in the future if needed. Unfortunately, my insurance only pays for certain pharmacies to fill specialty drugs (only 2 or 3 are on the list) and Accredo is one of those. They still have not filed the first claim with my insurance company after five months of treatment. I am afraid I may get billed in the end but I don’t have the energy to address this too with such an incompetent staff. It’s all I can do just to get my prescription order filled. They could benefit from some organizational restructure and retraining!

Accredo Specialty Pharmacy, division of Express Scripts is absolutely the most rude and inefficient company I have ever come across. And they don’t have to serve customers, Customers come automatically because they’ve gone to bed with insurance companies creating a legal monopoly in southeast states. Also, the drug manufacturers helped grease the skids to pass laws so that there can be NO generic versions of many specialty pharmacy drugs (mine Humira). I would pay extra just to get my Rx away from Accredo. Hoping search engines pick this up so they get fired!

Worst. Company. EVER. I have been getting Xolair from them for about a year now and I have issues EVERY SINGLE MONTH! At one point they didn’t ship the sterile water needed for the injections because they needed a prescription from my doctor (which it used to always come with the supply pack). So my doctor submits the prescription right away. No problem, right? Lo and behold, they never shipped it. A week later I called to see what was going on and the service rep says, “Well, I see where your doctor put in the prescription, but he never called to tell us to ship it.” Now why on earth would my doctor need to call to ask them to ship what he just sent in a prescription for?? So I told the guy, “Hey…you really need to let the doctor know if there is a requirement for him to turn around and call to tell you to ship what he just asked for.” And then the rep tells me, “There is no requirement for him to call.” To which I reply, “But you won’t ship it unless he calls?” And he says, “right’. So I’m back to saying he needs to let the doctor know if this is a requirement. And he once again says it’s not a requirement. So I say, “But you won’t ship if he doesn’t call”. And he says, “Right…but it’s still not a requirement.” I told him the doctor wouldn’t have submitted a prescription if he didn’t want it shipped, to which he said, “Oh…it happens all the time.” *boggle In August I was supposed to have a shot delivered for the 3rd, 17th and 31st. I got the 3rd and 17th, but not 31st. They said they called my doctor’s office on the 31st during lunch (when I should have gotten the shot) and left a message but they said no one called back. They didn’t bother calling me or the doctor’s office again until yesterday (the 10th). And because we’re almost 2 weeks away from when I should have gotten the shot, they are simply skipping shipping the one for the 31st because they say they can’t go back in time. Which means I will have missed a round of my shot completely, which is a problem since this medication builds up in my system to help. They are adamant that they will not ship this missing dose from the 31st. Unbelievable. I told them they are NOT the doctor and that their orders are for Xolair every 2 weeks. If they missed sending one, they need to send it. My doctor will decide if he wants to give me 2 at once or 1 ever week for the next 3 shots. It should not be up to them. They should simply fill my freaking order. I HATE THIS COMPANY!!!! It’s been something like this every month. And Express Scripts isn’t much better (the company that forces me to use Accredo).

Here is a blog post from a woman battling RA without her meds thanks to Accredo.

And another post from a woman who has a daughter dealing with cancer.

*I’m no longer adding new comments as they are still coming in almost two years later, but they are there to read below. Please share your story. It IS being read by someone at Accredo.* (I mad an exception for a supposed CVS employee at the end of the post.)

This is disgusting. Trust me, people who are dealing with an illness or a family member with a health problem have enough on their plate. Even though Accredo is no longer my personal problem, they added a great deal of stress to my life when I had more than enough going on. If you are on a medication that requires use of a specialty pharmacy, it’s probably a pretty damn important med. An it’s either not available at your local pharmacy, or your insurance isn’t allowing you to get it there because they get a better deal with the mail order pharmacy, as is my case with Connor’s Onfi. I now get vigabatrin through Caremark and Onfi through Optum RX (not to mention Keppra through the local CVS, arghhhh…so fun to keep track of). Thank God Caremark and Optum have thus far been able to provide Connor’s medication without making my life hell. And believe me, if that ever changes, you will hear about it…

Yeah, buddy. Tell me about it.

Update 5/19/14

I received this comment today from an employee. I appreciate this person taking the time to comment.

I have just recently started working for Accredo and although I have not heard of any of these medications and am not working in that particular department I love my job here and am very distressed hearing the different scenerios. Just a FYI I have a problem all the time getting what I need from the physicians office to get my patients authorized. Example I requested clinicals on a patient from her MD’S office..I waited three weeks got every excuse there was.Finally I received them AFTER her authorization expired. I have lots of stories like this..Though I am sure evryone of your stories is a nightmare for you and your family sometimes it is actually the patients MD’S office that is holding up progress. WE can not move foward with out them. I have waited days/weeks fro prescriptions, clinicals waited for the MD to actually call the insurance company. So many different scenerios. Just wanted to put alittle perspective out there. My patients and their well being is the most important thing to me. But sometimes our hands are truly tied. Prior Authorization Represenative

My reply:

Thank you for your input from the inside. I think there are many cases in which you are absolutely right and there are issues coming from the doctor’s office dropping the ball. What really got me going on the issue, however, was my personal experience in which even basic refills were problematic. I have never had an issue getting my refill from Caremark, but it was a monthly issue with Accredo. I know I’m not alone because this is a frequent topic of discussion on the TSC boards. I can verify beyond a doubt that there are major issues with Accredo’s system. One of my refill issues that I detailed in a different post came from them all of a sudden reverting to calling an old practice for my son’s dr. He had not been at that practice since we started seeing him and they had been contacting the correct number. All of a sudden our meds don’t show for scheduled delivery and the day, and with no prior notice, I’m told they haven’t been able to contact the dr for authorization due to refills being used up. I don’t know why they spent two weeks calling the wrong place when they had been in contact with the right place before, but I set them straight on the contact info. Still couldn’t get meds. Nurse practitioner called for me. They still had the wrong info. I called again the next day — after recruiting the Lundbeck Share program for help — to see where our meds were and they STILL had the wrong information. Every time there is an issue, nothing is ever noted in the system. So you start from scratch with every single call. While every issue may not lie with Accredo, I do find it interesting that I have never had the issues with Caremark or Optum Rx that I did with Accredo. Admittedly it’s anecdotal, but Accredo is known as the devil pharmacy in the TSC community. I have never seen near the complaints with any other place. It concerns me that so many complaints are coming in for so many important meds. I follow links back to see how people are referred here, and have seen similar discussions on other health boards of outstanding problems with Accredo, most recently an HIV discussion board.

I know many moms from my online community that are reduced to tears on a monthly basis trying to get their meds. Thank you for being so concerned for your patients. Unfortunately, many of us feel like you are the exception and not the rule.

However, this employee has a different take:

Hello. I cannot say my name since I work at accredo but it’s all true! I have many years experience in the medical insurance industry as well as pharmaceuticals and it totally scares me how they have not been sued down to their last nickel. I’ve seen Rx’s for transplant medication prescriptions just sit while a patient goes without and we as representatives are not allowed to fix or do anything. We have to “create a task” to request something corrected or processed or anything else needing to be done. I’ve seen orders be cancelled for no reason and some just not ship out. All the company cares about are numbers and quantity verses quality so if a couple hundred orders go fine it’s no matter to them if one does not! There are HIV patients who get the run around also. Yes, insurance companies do delay their prior authorizations and yes they also deny claims too but as a specialty pharmacy more care should be with quality and accuracy. They flat out do not train for the type of job and for sensitive meds and nothing is done to coworkers who make mistakes constantly or give wrong information. I pray everyday to be able to help my patients as they are often fighting to live and that my employer will even just care about that. I am hopeful for tomorrow.

My response:

Thank you for the additional information. I’m happy to add your comment to the post to add some more perspective to the situation. Unfortunately, the average patient isn’t going to know the ins and outs of the merger and who is who–all patients know is that they’ve been assigned to Accredo pharmacy. If indeed people within Accredo are trying to improve, that’s fantastic. But unfortunately at his time this is what many people are experiencing when dealing with them, even if it isn’t the original management’s fault. ESI/Curascript may be at fault, but they are destroying Accredo’s name in the process if that’s the case. Asking for supervisor seems to be met with mixed results–sometimes successful, but not always.In talking with people in my groups, it seems like sometimes they can get assistance for one problem, only to be met with the problem again the next month. When exactly was the merger? I’d like to add that to my post so I can clarify for readers so they can compare their experiences before and after.

Update 10/10/14

I was contacted by a reader who has formed a Facebook group to collectively combat this issue. Please join and share your story here.

Update 8/16/16

This continues to be a frequently-read blogpost. I know there are people who have issues with Caremark, however, I can only speak from my experience –and share the experiences I am sent. These comments were left on my blog today by someone claiming to work for CVS. I can’t help but suspect this is really an Accredo employee, masquerading as a CVS employee, but I don’t really know. Either way, this is the sort of person who is a problem in these companies. If this person thinks nothing of taking a handicapped spot and belittling the people who need them, there is no way this employee can comprehend just how serious the issue is of not getting lifesaving medications on time.

Comment 1: I don’t see anywhere to email you this, but I saw your blog post from 2013 in which you said this: “I was so frustrated that I started looking into whether there was some sort of governing body to report them to, but just as I did that, lo and behold, our insurance had us switch to the far more competent CVS Caremark mail order pharmacy, so I never pursued it.”
I was curious as to the amount of “care” you are getting from Caremark, because I work there and I hear the same thing albeit in exact reverse. “Accredo never did these kinds of things but now they make us use you, I hope you’re ashamed to work there,” are some of the minor things I’ve been told.
So please, prey tell how that is going for you because I really don’t want to spend any more time searching your blog, because it’s parents like you who can make someone trying to make an honest living mad enough to write about it on some lady’s blog post. This is me in real life, now if you called me I wouldn’t know it but do you know how many times people take this stuff out on the people who can’t even fix it?!!
I’m sorry to hijack your handicap parking post, maybe they just forgot it, never bothered me once, or maybe it would be nice for you to park way at the back sometimes for some fresh air for your son, but what does bother me is you having a blog post about how bad your experience with express scripts or accredo was and then was switched to Caremark, whom you deemed more competent. Well tell that to the people that like to take their frustration out on people like me, who just get paid $13/hr to hit some keystrokes so your meds go out. You should be ashamed of yourself, being a mommy and all, spreading that crap. Yeah it was from 2-3 years ago but people still read it. Take it down for the sake of people like me, because I bet you won’t tell me where you work, or husband, so I can go complain about the crappy service we ALL get at one point. smh

Comment 2:
I’m sorry, but the fact that you need to approve who can post on your blog is straight up wrong, again another reason to be ashamed. You really are mixed up I guess.

Comment 3: My comment still won’t show on your latest blog post about having to walk a few extra feet with the whole handicap thing. Your express scripts post disgusted me, and I don’t even work for them, I work for Caremark in Monroeville PA and I take calls all day from people like you. Except they say “I wish our insurance didn’t switch to your company, Express Scripts was so much better. Yet you publicly said that going to Caremark was a saving grace or whatever it is you said. So which is it? None of you get it, some do, but most don’t. And you, mommy, need to post or approve my reply because this is a public blog and people need to know the truth about your fraudulent claims. I will keep bothering you until I get a reply. phasedance@gmx.com

Why I stopped working with mail order pharmacies (kevinmd.com)

Parenting, Tuberous Sclerosis

Guest Post – Mixed Up Mommy

November 10, 2013 Rebecca Gaunt 2 Comments

Savanna's Journey

Infantile Spasms are not diagnosed early in many cases due to a lack of knowledge, even by physicians. I am not putting any blame on physicians, but the fact is that this is so rare, most practicing pediatricians simply won’t even see a case in their career. Parents are almost always blindsided by such a diagnosis. In some cases, a family has warning of a symptomatic onset of this epilepsy. All scientific evidence indicates early diagnosis and aggressive treatment gives the patient the best chance at the not only stopping the seizures, but the best developmental outcome as well.

The only thing I have obsessed over more than my son’s tuberous sclerosis complex diagnosis was the possible onset of infantile spasms. Since we had Connor’s diagnosis shortly after birth, we were in an uncommon position of knowing to be on the lookout for this rare and catastrophic seizure type. We…

View original post 998 more words

Parenting, Tuberous Sclerosis

Relieved after talking to the neurologist.

October 11, 2013 Rebecca Gaunt 6 Comments

Feeling much better this morning after an appointment with Connor’s neurologist. We were dismayed to hear about changes on the ERG, but I really freaked out yesterday when his medical assistant mentioned in an e-mail that he wanted to discuss the ketogenic diet. The ketogenic diet is no joke–read here–it involves hospitalization to start it, measuring everything he eats and it’s more extreme than Atkins. I have never wanted to do the keto diet and have always hoped it would never even be a consideration. Don’t get me wrong, it’s not off the table and I understand why people do it, and some have great success, but it just seems like a nightmare to me. I hope to find seizure control another way.

I was really freaked thinking we were going to be told Connor MUST come off the vigabatrin immediately and that the keto diet would be on the immediate horizon. Thankfully, not the case. While a change on the ERG is reason for concern and close monitoring, our doctor said to also take it with a grain of salt. Many parts of the country, people aren’t even doing these because it’s somewhat unreliable at this age. It can’t tell you how much vision is being affected, if at all, only that the retina isn’t responding quite the same way with one of the wavelengths or something–honestly I don’t understand it well enough to explain it. Sometimes, later tests go back to normal and it was just an anomaly, and yes, sometimes the peripheral vision is affected, but the positives of the meds outweigh the negatives. In his experience, most of the time a kid has gone off due to changes on the ERG, they ended up back on it because it was simply the most effective med for them. Unfortunately, keeping the seizures at bay must take precedence over perfect vision. If it was an issue of blindness, I’d be much for freaked out, but hopefully, if he does suffer any loss to peripheral vision, he will learn to compensate.

We do have to decide if we go back for another ERG in a month, or wait the standard three months. He didn’t seem to think it was worth the sedation to go back in a month, though. Obviously, we could have to face decisions over again if we continue to see changes, but hopefully that won’t be the case.

As far as the keto diet goes, he brought that up more as a possibility, and he felt the modified Atkins diet was equally good (and less insane–my words, not his). We will revisit that in a few weeks after we see what happens with the increases in Onfi. We are also finally weaning Keppra- the drug that has been the unchanging constant through all this. We’re not sure it’s really doing anything, so we’ll monitor and see what happens.

He also said down the road, there are other drugs we haven’t tried, though he can’t vouch for them when so many have failed. And we can also revisit surgical options as well as VNS. VNS doesn’t thrill me, as I haven’t seen as much success with that online as I would like for such a major surgical/implant intervention. What is VNS? Read here. That being said, like any treatment, one person’s fail is another’s miracle.

Please cross your fingers for the vigabatrin/Onfi combo and no further change on the ERG!

Last night, we attended a meeting with a Met Life rep regarding financial planning for special needs. The truth is, we don’t know where TSC will have Connor as an adult. Maybe he’ll be doing great and self-supporting, but we just don’t know at this point. So it was time to look into how to plan for the possibility that he may not live entirely independently, possibly because of cognitive issues, or maybe because of health/epilepsy issues. Thank goodness, we did! It’s pretty easy to complicate your child’s situation and have no idea you are doing so. If you have a child receiving any government benefits, such as Katie Beckett or if they are over 18 on SSI, if they inherit anything adding up to over $2,000 they can lose their benefits! Who came up with that number as a cutoff? Seriously? And can so easily happen by accident–savings bonds purchased for them by a relative, naming them directly on a will, putting them as your life insurance beneficiary, or just not having a will and they automatically inherit. Once those assets are spent, they can reapply, but those of us who have applied for such things know how nightmarish it can be. And losing them even temporarily can wreak havoc. The presenter shared a story of a woman in her 50s or 60s living in a group home supported by Medicaid. She had been there for a long time. When her parents passed, they had no will and she inherited what they had, which wasn’t much. She had to move out of the home, and within a few months the assets were spent. She could then reapply, but her spot had been taken. She lost her parents and her home.

We will have to have a special needs lawyer help us with a special needs trust that will protect him from anything like that. Anything that he inherits must go to the trust. That way, if he’s receiving any benefits they won’t be affected. Don’t worry, the government gets theirs. This kind of trust is taxed at one of the highest rates, in case you were worried they’d run out of barricades for our national monuments.

Join us for a meeting with new Atlanta TSC clinic director, Dr. Wolf!
Sunday, November 10, 2013
2 – 4 p.m.
Mount Vernon Baptist Church
850 Mt. Vernon Hwy NW
Sandy Springs, GA 30327

Dr. David Wolf will be spending his afternoon meeting the local TSC individuals and families of the TS Alliance of Atlanta/North Georgia. Join us for this valuable opportunity to meet both Dr. Wolf and other local TSC individuals and families!
There will be light refreshments available.

RSVP to Becky pin.the.map@gmail.com

Update 7/16/14:

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Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.