Tag Archives: parenting

Are You Sick? Don’t Put My Kid in the Hospital.

November 3, 2016 Rebecca Gaunt 2 Comments

I’m not really sure why I’m writing this. The people who actually need to read it either won’t…or will dismiss it immediately after they do.

But I’m going to say it anyway because your family, job and schedule are not more important than mine or anyone else’s. And maybe a Motrin Mom or a Motrin Dad will actually listen.

Don’t. Send. Your. Kid. To. School. Sick.

Colds are a pain. Symptoms can last for weeks. The reality is that everyone can’t stay home for the entire duration of all cold symptoms. I get that. Runny noses are inevitable in a classroom of young children. But if your kid is coughing and sneezing non-stop. Clearly feeling miserable. Running a fever. Don’t do it.

Keep them home.

Did you give your kid Motrin this morning to lower their fever JUST ENOUGH to squeak by the rules? Does your kid need Motrin PERIOD to get through this period of their communicable illness?

Then they should stay home.

Yesterday I saw an older kid start crying as she walked through the front doors of school because she didn’t feel well. She literally just got out of her parents’ car, and was already telling a teacher she was sick. Today I found out about a kid in my son’s special needs pre-school class whose mom is playing the Motrin game.

This was my son in September with the rhinovirus. Do you know what that is? It’s the common cold.

Because of his seizure disorder, this particular cold, for reasons we don’t understand, triggered a status episode that led to 12 days in ICU. Illness in general, tends to trigger an increase in seizures, but we have no idea why this one was so incredibly bad.

Now I know I can’t protect him from all illnesses. No matter what I do, he is bound to get sick. It takes time to build an immune system and there is no way he is never going to catch something at school. We all get sick and we all spread sickness, even if we don’t mean to.

But when you know you are at the peak of contagion.

When you know your kid needs Motrin to pass the nurse’s test.

When you know your kid is not only coughing their lungs out, but also is too young to understand about covering their mouth and hygiene.

When you know they attend school with medically fragile children.

Oh you didn’t know that? Your kid probably does, even if you don’t know it. In fact, it doesn’t matter if they don’t actually have medically fragile schoolmates. Because we never know when even a typical kid is going to have an unexpected reaction to an otherwise ordinary illness.

So please do your part. And by the way, I used to teach. Assuming your child is verbal, they love to rat you out that they were sick that morning and mommy or daddy gave them medicine so they could still go to school. So your kid’s teacher is probably aware you are a jerk with no regard for others.

It’s not just about inconveniencing people. Maybe it was just a cold or cough, or 24-hour virus for you. That doesn’t mean it will be for the next person.

It might mean an ER visit.

An ICU admission.

A ventilator.

Understand that in the special needs/medically fragile community, it might mean death.

This is Malarie.

Photo and story shared with parents' permission. — Photo and story shared with parents’ permission.

She was 10 and had the same genetic disorder (tuberous sclerosis complex) as my son. She got sick last June and her parents took her to the ER for what they thought would be a short visit to get a handle on her illness. Within hours she developed pneumonia, went into septic shock and passed away. It was completely unexpected and devastating.

What might be nothing for you, could be fatal for someone else. If you know you are sick and contagious, or that your kid is, do the right thing.

Stay home.

Guest Bloggers For TSC Awareness Month, Tuberous Sclerosis

“If you spend too much time waiting for the storm, you’ll miss the sunshine.”

May 5, 2015 Rebecca Gaunt 4 Comments

Day 5 of Blogging for TSC Awareness Month

by guest blogger Amy Dublinske (Kansas City, Missouri)

“If you spend too much time waiting for the storm, you’ll miss the sunshine.” A wise quote to live by, though easier said than done when battling a chronic illness. Realistically, with the tribulations of tuberous sclerosis complex it does feel like you are always waiting for the other shoe to drop, waiting for the train that’s about to hit you or walking through a land mine. Our journey with TSC officially began one decade ago today, 05/05/05.

Cinco De Mayo is the ultimate celebration in the United States and Mexico. A day observed to commemorate Mexican army’s unlikely victory over French forces. For the past decade Cinco De Mayo has carried a new meaning for me and my family. On May 5^th, 2005, our precious daughter Kierstin Gabriella was born….with tuberous sclerosis complex. May 5^th now marks the day we officially entered “The TSC Club.” The dreaded diagnosis that we truly feared that may just become our reality. Cinco De Mayo has truly been a bitter-sweet day for the past ten years.

While pregnant, doctors told us that there was a 50/50 chance that our baby girl had TSC due to numerous cardiac rhabdomyoma tumors. We researched TSC. We talked to several TS families but were plotting out how we would tell them the day that they determined that our baby “really didn’t” have this awful disorder after all. Denial is a happy place, Right?! Unfortunately that day never came and we were officially inducted into “The Club.”

I can clearly recall the cardiologist trying to gently explain Tuberous Sclerosis to this very pregnant mom-to-be for the first time ever hearing those words uttered. Though his English was broken, the one thing that was abundantly clear in any language were his words “we hope it is not Tuberous Sclerosis. This is a very grim diagnosis.” The words “brain tumors, heart tumors, kidney tumors, mental retardation and there is no cure” were also communicated rather clearly.

When leaving the hospital, while nearing the elevator I witnessed a mom pushing her infant daughter in a stroller. She began lifting her in the air and playing peek-a-boo with her to the point of the baby belly laughing. I suddenly became weak in my knees and collapsed right there on the floor at over eight months pregnant. It suddenly struck me that we may never have this with our baby girl or may never experience the privilege of hearing those belly laughs. How could this possibly be happening to us and to our precious daughter that we longed for years to have? We had so many hopes and dreams for this little one and all those dreams seemed to be suddenly shattering with just one sonogram. I think at that very moment I knew in my head that she had TSC, yet my heart wasn’t willing to accept it. The next month is a complete blur as we prepare for the unimaginable while still holding onto a small shred of hope that they might be wrong.

Essentially, May 5^th doctors confirmed what we dreaded and the medical journey which was filled with much uncertainty began. She was induced with the anticipation of open heart surgery given large rhabdomyoma tumor growth. Though her heart was more stable than initially expected, we quickly received the dreaded diagnosis of TUBEROUS SCLEROSIS. All of her organs were affected with tumors at birth. We were devastated beyond words! A short glimpse of the journey begins with evaluating every organ by a new “ologist.” Countless appointments, numerous medications, relentless seizures, years of therapies, multiple hospitalizations, brain surgeries and weeks and weeks and weeks advocating and educating about this diagnosis that I have quickly become an expert on is what our “new normal” consisted of. No one imagines their baby struggling to reach the most basic of milestones like rolling over or sitting up. Who plans their family vacation destination in conjunction with medical appointments with specialists from across the country? Every parent of a child with special needs grieves their child’s diagnosis at one point in time. I remember silently crying in the shower in the mornings, so that no one would hear me. I am ashamed to admit that I have never completed Kierstin’s baby book. Every time I would try it would be a reminder to me that she had not met any of her first year milestones, or if she did, briefly she would lose the milestone with the next seizure.

If I knew then what I know now, I would definitely have spent more time in the sunshine and less time waiting for the storm. “The storm,” which was more equivalent to a never-ending roller coaster ride with some of the most gut-wrenching twists and turns you can imagine, has taught us how to live in constant chaos and crisis so to speak. This journey and particularly Kierstin has taught me more about life than anything else I have ever experienced. Throughout the years I have had dozens of people say “You are such a strong person, this must be why you were chosen to be Kierstin’s mom.” Being strong is the ONLY option. We refuse to allow TSC to define our daughter, but more importantly SHE refuses to let TSC define her!!

Kierstin has taught me unconditional love to a higher degree than I ever thought possible. Though my dreams of having my first born daughter are much different than today’s reality, I have so much to be thankful for. This journey with TSC is not quite the journey of my dreams; though Kierstin is the daughter I have always dreamed of!! This year we celebrate Cinco De Mayo thankful for God choosing us and mostly trusting us to be her parents. We are eternally blessed and thankful for this privilege of meeting our hero on May 5^th of 2005. Many people dream of someday meeting their hero, but fortunately I gave birth to mine!! So after a decade battling TSC, Cinco De Mayo is now my day of celebrating my HERO!! Enjoy the sunshine, forget about the storm. And Always Remember: We Will Give Everything! But Up!!

Guest Bloggers For TSC Awareness Month, Tuberous Sclerosis

Unconditional Love

May 3, 2015 Rebecca Gaunt 5 Comments

Day 3 of Blogging for TSC Awareness Month

by guest blogger Caroline Clyborne Ramirez (Austin, Texas)

Since our son, Leif, first learned to talk, we’ve been drilling him on a basic call and response:

“Why do I love you?”

“Because I’m your son.”

We did this because we wanted him to know that he was loved, no matter what. He had our permission to be lost and a knucklehead while figuring himself out. He could worry about other problems, like having to eat vegetables and sharing. He did not need to worry about courting his parents’ love.

Then, my daughter was born. At four months, we learned that Colette had a diagnosis– tuberous sclerosis. She had about 20 benign brain tumors and epilepsy. We didn’t know if she would be smart or independent. Our blank slate of a baby came with no guarantees.

The grief and terror of the first couple of months were intense. I wanted to pull away. I wondered if I could ever love this child like I loved my son. What had I told him? “I love you because you’re my son.” I’d promised him. Could I sincerely offer that to my daughter? I felt like a fraud.

Life got busy. I stepped away from my career and into the life of a medical advocate. Colette had weekly PT, OT and eventually speech therapy. She had frequent overnight hospital stays to adjust medication any time we saw seizure activity. There were eye appointments every 3 months because her seizure control medication endangered her vision. We drove to Houston every three months to participate in a clinical study. The insurance company required weekly hounding to cover the basics. It was only the beginning, and already, the tasks made me a busy bee. My son loudly demonstrated his frustration with the redirection of my attention. I tried to be enough and constantly fell short. I worried that our sleepy, medicated baby was the most flexible member of the family. Her big blue eyes sparkled, and she never complained.

It’s an odd thing to be given an open-ended diagnosis. There was no adjusting to the news. The hope and despair pulled me up and brought me down like a roller coaster– tea leaf predictions from smiles and gas. I wanted to either grieve or enjoy my child. The “what ifs” of the future were easy to Google, from skin lesions on her face to LAM in her lungs. What if she can’t learn and spends the rest of her life in diapers? What if she develops behavioral issues and hits us? My one life experience as a substitute teacher in a Special Education had taught me that was NOT my population. I did not reach out to moms with older kids whose fates scared me. I clung, tooth and nail, to the shallow end of the pool and hoped we would never have to drown.

I was in constant fear that she would take a turn for the worst and we, as a family, would not be okay. Meanwhile, Colette was a bright-eyed and happy baby. She splashed the water in her bath and gnawed on her Sophie giraffe. It was a bizarre juxtaposition. Colette was the poster child of innocence. I was her strung out Mom. In tiny slivers of clarity, I dug my nose into her neck and smelled her yummy baby smell. Regretfully, I often saw TSC more than I saw my daughter.

That was when she had seizure control. When that ended at 10 months old, my nightmares developed a physical form. I took detailed notes of what movements we saw and sent them to the white coats in this army. Please, I said. Please protect Colette. Our precious baby continued to smile, but she almost never babbled.

Even though we were creeping toward the chasm that I’d feared would swallow our family, I felt calm and sad. I acknowledged more publicly what was happening, and wept big tears as I faced how little control we had over a disease that had no cure. Colette had good days and bad days, and so did I. I spent my time taking her to appointments, arguing with insurance, and trying to keep things normal for our family. I felt depleted and I felt despair.

I realized at some point that my nightmares were a very loud statement to both my kids. Colette’s imperfection had made Mommy sad. TSC was in her DNA. Colette, by simply being born, had brought TSC and all of its challenges into our home. Her sweet demeanor may have been lovely, but it was a consolation, a kindness that momentarily offset a mountain of pain. She had more to worry about than having to eat vegetables, and even more to worry about than experiencing seizures. She had caused her family to suffer by means of existing. Something was terribly wrong, and that something was within me.

There was a woman on Facebook with a daughter who was cognitively two and physically 25. She kept posting proud mommy posts, and she baffled me with her acceptance of her child. I didn’t understand her, but something in me was shifting. I realized that a 2-year-old is lovable and delightful. My expectations of her child– that her child act 25– imposed onto her child’s existence something presumably painful that might not be real.

As I thought about her child, I was flooded with memories of my beloved Grandpa. Grandpa had Parkinson’s. He was sweet. He threw a purple foam ball back and forth with me. I didn’t “know better” that he’d lost something. I just loved him, and he loved me. Maybe I didn’t need the conditions I had for loving my child. Maybe I could just love my child.

As my eyes opened wider, I became aware also of how my vanity bled into my relationship with my son. He was so smart. He was so handsome. My pride appreciated pieces of him he never chose for himself. It was an easy mistake to make. In a family of nerds, his brains made him feel like our boy. However, he was getting extra credit because of his luck– because I was proud of his gifts.

How unfair of me. My job was to help him develop his character, and my preference for his smarts added conditions to my love and modified my expectations of him. His sister aside, I saw a rot forming in my parenting. Colette’s condition challenged my vanity and made me see both kids more clearly.

Humbly, as a flawed person mid-stream, I am challenging myself to change what I expect of both my kids. I am going to love them both because they’re my kids. I am not going to give Leif extra credit for being smart, and I am not going to turn Colette’s existence into a burden anymore. I’m just going to support her health as she needs and enjoy her in the present, stripped of all the disparaging “shoulds” that diminish her humanity. If I need to, I’ll think of Grandpa and find a way to throw a ball to my daughter. I’ll appreciate the day she can throw it back, but I won’t love her more for it.

I’ll keep love simple. That way, my kids can stop worrying about the quality of my love and start focusing on the road in front of them. When I whisper in my daughter’s ear that I love her, I now really know the answer. I love her because she’s my daughter– no matter what.

Brain surgery is coming this month. Finally, we’re ready.

Ordinary Life, Parenting

Who thought it was a good idea to take her kid along for a dentist appointment? This gal!

January 20, 2015 Rebecca Gaunt Leave a comment

It turned out not to be a good idea. Not a good idea at all.

I wasn’t able to get an appointment within the planned window of time when I called. I had to wait until after the new year and slots were few. I just took the first available. I figured when it got closer I’d either ask someone to watch him or I’d take him in the stroller. He’s pretty mellow most of the time. I felt if he was in the stroller, it would be doable as long as I had access to YouTube on my phone.

Atlanta was entering a week of Seattle-esque weather so I was a little cranky to start with the morning of my appointment. As I began to put our stuff in the car, it hit me. The stroller was in Chris’s car. My husband mostly works from home, but today he was at the office.

There were lots of four letter words as I realized that this appointment was going down like the Hindenburg. A toddler at an appointment is one thing. A free and unconstrained toddler is another. And with less than an hour until appointment time, there was no way I’d risk a cancellation fee. Emotionally that’s akin to paying to park, when walking a couple blocks will get me a free space.

Ah yes, the space saver high chair that fits on a regular chair. He could be locked into it off to the side of the dentist cube, yes? That’ll do. I was feeling very MacGyver and brilliant. Connor is always fascinated when the chair within a chair is placed on the floor. He will sit in it just because of the novelty.

I discovered his love for sitting in the chair without a chair when I set it on the floor during a weekend in the mountains and he didn't want to get out of it. — I discovered his love for sitting in the chair without a chair when I set it on the floor during a weekend in the mountains and he didn’t want to get out of it.

Problem solved, we headed off.

First he decided he was not sure he wanted to walk into the dentist office so he plopped down on the ground outside the door. I was losing my grip on the chair at this point so I set it inside the hall so I could encourage him to keep going. He came in the first door and then decided he wanted to hang out right there outside the actual office, so he plopped down again. He was eventually coaxed into the waiting room by the sight of his magical throne…on the floor.

My dentist is never on time, no matter what time of day the appointment is. I will say that this particular morning they were only 15 minutes behind, but Connor’s unwillingness to settle on one place to sit made it feel like much longer. At one point I thought he was going to try and make off with an older woman’s walker.

When the assistant finally came to get me, I made a point to loudly blame my husband for the odd situation. The part about him unexpectedly going to the office was a lie. The part about him making off with the stroller was true. A lady laughed and I could tell she was admiring my brilliance in the face of such hardship.

First problem was that they needed a full set of x-rays, probably because I have forgotten to go since Connor was born. So he had to sit in the chair outside the cube. He didn’t care for this plan and he let it be known. Loudly. One of the hygienists walked him around the cubes while my gag reflex went into the most overreactive state I have ever experienced. It was seriously ridiculous. Every time she stuck that cardboard in my mouth, I felt like a cat with a hairball.

Connor returned for my cleaning and he was locked into his precious chair. Except apparently he only likes the chair on the floor if he’s not locked in. And it’s his decision. Toys got tossed, his new toothbrush gifted by the hygienist got tossed — come to think of it, I haven’t seen the toothbrush since. Guess it got tossed in a corner somewhere. Or it’s at the bottom of my purse. Either way, gone forever.

I could hear myself thinking from just a few short years ago from another cube. “This lady seriously brought her kid to the dentist? It’s called a babysitter. I will never do that when I have a kid!”

My hygienist tried to get him to color, despite my explaining that with his delays, we weren’t quite there yet. But she did give it the old college try. She was very nice, considering. I think it helped that her first, now adult, child had special needs, too. Another employee came to walk him around and keep him busy while I was being cleaned. He returned for the wait for the final check by the dentist. He explored the mechanics of climbing on me and jumping off me in great detail. When the dentist finally came, my hygienist corralled Connor for the check, where once again I was encouraged to remove the partially emerged wisdom tooth that didn’t make an appearance until my 30s (it is my only wisdom tooth, even on x-ray). I would have asked a couple of questions about my teeth, including if I should do anything about the one I recently chipped. It’s really small and Chris swears it’s not noticeable, but I’m kind of obsessed with it. But he took off before he could be handed toddler duty. Probably for the best, as one of my questions would probably have been answered with, “Stop drinking coffee.” That’s never going to happen. In fact, I chipped my tooth on my coffee mug.

Now that the visit was over, Connor decided to be cooperative and did a good job of waiting while I checked out and following me to the car. I congratulated him on the success of his mission. I will never try this again. But that’s okay. Vengeance will be mine.

Parenting, Tuberous Sclerosis

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.

Georgia, Travel

Sleeping With Scorpions

October 28, 2014 Rebecca Gaunt 3 Comments

It was a quiet, relaxing, long weekend in the North Georgia mountains minus the morning we woke up with a couple of surprise visitors in the room.

Chris was the first to drag himself out of bed and head to the bathroom. I heard him utter, “What is that?! Is that a scorpion?!” Haha. Chris is the boy who cried scorpion (and various other creepy crawlers) to scare me so I just said, “Yeah, right.” He continued to insist there was something in the bathtub, so I got up to look. I didn’t even make it to the door because right there in my path:

Okay, technically this is the one in the tub, but you get the idea.

Yes, right in the exact precise path I had used three times in the nearly pitch dark to use the bathroom throughout the night (I blame wine and my 30s). Thank God for my $2 Target flip flops. Sometime during the night a couple of scorpions showed up to party. I don’t CARE that the Internet insists Georgia scorpions aren’t deadly. There are certain things that should never be in a bedroom and scorpions are on the list, right after porcelain dolls and Robert Pattinson (sorry, I just don’t see it). I ended up discovering a couple dead scorpions between my nightstand and bed as well. So began the panicked gathering of items — including one toddler — and move from the bottom floor (selected for misguided idea that Connor might go to bed first ) to the top/third floor. A hefty climb for such creatures (I choose to believe). We then went through everything in our bags to ensure we had not picked up any stowaways. Chris, for perhaps the first time ever, had not completely repacked and closed his bag, something I always make fun of him for doing every night on any vacation anywhere in the world. He says he likes to be prepared for escape Jason Bourne-style. He claimed he skipped it this time because I always make fun of him, and now here he was checking for scorpions as a result of my ridicule.

But other than that little adventure with wildlife, it was a relaxing trip. I even managed to read an entire book in about a day and a half — something that I used to be able to do all the time, but can barely get through a chapter most of the time these days. I couldn’t believe how fast I tore through this book. I felt like my increasingly dysfunctional brain had woken up in the fresh mountain air. Okay, so it turned out at the end that I had downloaded a Young Adult novel. I knew it had won awards and was also being banned in several places, cementing my desire to read it. I just didn’t realize the places it was being banned were American school libraries. At any rate, The Absolutely True Diary of a Part-Time Indian by Sherman Alexie was pretty good.

I also discovered that Connor, who loves taking baths at home, isn’t down with large Jacuzzi-style tubs. He flipped out and refused to even let me set him down in it, so I had to bathe him in the sink as the regular tub was now hosting a scorpion.

Connor has really been making great progress lately. Some of the awesome things we’ve seen lately:

He’s very quick to respond to requests more frequently, like “let’s go upstairs,” “time to eat” or “show me______.”

He was able to squat down perfectly, pick up book and stand back up without any support from furniture.

He watched me demonstrate his bowling set and immediately helped me set the pins back up after ONE DEMONSTRATION!

He had taken his bib and put it on the couch. When I told him to come eat, he actually stopped, picked up the bib and brought it with him!

We are still waiting to hear from GW about including him in the Epidiolex trial. Argh. It’s been a month since additional paperwork was submitted.

Side note: I’ve previously posted about Accredo Pharmacy (Express Scripts) issues. A couple readers have contacted me about their ongoing issues and have subsequently started an FB group and petition. Please check out those links if you are a dissatisfied patient. While I do believe there are some employees working to help the situation, it appears they are the minority and way too many people are still fighting for their prescriptions. The change isn’t coming fast enough for people who are very sick and depend on these meds. If you are experiencing issues, please e-mail Jennifer Luddy at ExpressRxHelp@express-scripts.com.

Parenting, Tuberous Sclerosis

A night in the hospital.

September 22, 2014 Rebecca Gaunt 9 Comments

There has been a lot going on lately. Last Sunday I attended the celebration of life for Trinity Sumlin. I met her mother Sheryl when we were fighting for medical cannabis and HB 885 during the last Georgia legislative session. A couple months after HB 885 failed to pass — thanks to political gameplay, not lack of support — Sheryl took Trinity to Colorado to treat her. They were one of the families I shared about in this post. But sadly, Trinity passed away September 5. She was only 11. I was honored that Sheryl asked me to write the story to go in the children’s book she wanted to pass out at the celebration.

Connor’s seizure activity has been up and down. We really don’t see much activity in his waking hours, with the exception of little myoclonic jerks of his arms or sometimes his head. But all his complex-partial and tonic-clonic seizures are sleep related, so those happen during naps or at night. He’s also had a couple strange incidents in which he was not having obvious seizure activity, but he was weak and lethargic as though he had. Sometimes that has lasted several hours which concerned us. On Friday he was like that all day. Sometimes he’d start to perk up, only to decline again. He couldn’t sit on his own or even support his head. I slept with him on Friday to keep an eye on him. By midnight he was raring to go and things looked promising. Saturday morning he wasn’t quite as perky, but he did eat breakfast well (the day before he had no interest in drinking and eating) and was laughing so we thought it would turn out to be a normal day. Chris’ parents were in town and we all had plans to go to the North Georgia State Fair. This is how the day started:

As you can see, Connor looks less than enthralled. The one ride I took him on I had to hold his head to keep him from slumping over. We had never had two days of this before and all I could think was that there was some subclinical seizure activity going on (for those who don’t live in the world of epilepsy, that means seizures that appear on EEG but don’t cause visible activity). We called his neurologist’s office and his actual neuro also happened to be the one on call–which makes life soooooo much easier–right, TSC families?! When I told him he wasn’t really eating or drinking, he advised us to go to the ER. We were hesitant. believe it or not. That probably sounds crazy to those outside this life, but as most of us who have been dealing with this stuff for a while know, you start to realize how little can really be done at the ER. You’ll find many special needs families that have the attitude of “what can you do at the hospital that I can’t do at home?” (Besides infect me with MRSA). I mean if he was in a status seizure, or had something life threatening going on, that’s obviously ER territory, but this? We weren’t real confident. But it had been going on so long, we followed the advice. This is how the weekend ended up:

Doc says it's time to roll out! (to tune of Ludacris) — Doc says it’s time to roll out! (to tune of Ludacris)

They ran all the standard blood and urine tests (Connor chose not to pee for hours so when he did fill the bag there was no way to get it off without spreading the golden warmth everywhere). He was also hooked up to a keto-friendly (he’s on MAD) saline drip. Tests all came back normal. But when he didn’t really perk up after the saline, our neuro told the ER doctor not to send us home. This is where things got hairy. The ER doctor told us we were being admitted because of possible subclinical activity. So guess what we thought? How does one find out about subclinical activity? WITH AN EEG!!! I went home to pack a bag while Chris stayed with Connor. I was on my way back when I got the text. We were admitted , but they don’t do EEGs on the weekends. The rest of my texts to Chris were 90 percent F-bombs. The. Monopoly. Children’s. Healthcare. System. In. Georgia. Doesn’t. Do. Emergency. EEGs. On. Weekends. I was well aware that they didn’t schedule routine EEGS on the weekend, but…but…but… (And I later found out this happened to another TSC family who went in with INFANTILE SPASMS on a weekend). This is inexcusable. Utterly inexcusable. But I’ve never been quiet about how I feel about Children’s Healthcare of Atlanta at Scottish Rite (or CHOA in general). So we spent the night with Connor hooked to an IV to keep him hydrated. He did start to perk up late that evening and was much better the next day so we were discharged. I was happy to have him get the IV until he would eat and drink again and I totally understand why he was admitted. When we talked to Connor’s neuro, he said that was the reason he asked for us to be admitted, and that’s fine. The ER doc was either confused or we misunderstood the implication about the EEG, I guess.

But that doesn’t change my thoughts on the matter. There is no excuse that someone can’t get an EEG on the weekend for an emergency situation. I understand that hospitals aren’t as heavily staffed at that time, but this is not okay. So if a child has a seizure for the first time ever on a Friday night, you are crap out of luck until Monday? If a child presents with infantile spasms on a Saturday morning, too bad? We can’t confirm until Monday even though IS requires immediate treatment? I’m just at a loss.

I do want to say that other than that, the stay itself was probably the best one we’ve had. Attentive and proactive nurses and the attending doctor on the floor was fantastic, a far cry from the time he got EEG glue in his eye and I had to demand something be done for 17 hours before anyone would look at him. By then his eye was swollen shut and he was in terrific pain and requiring antibiotics. It also made me feel better about the fact that it took 16 hours to get paper towels brought to the room and that the urine sample that was spilled never got mopped or sanitized (there went our four paper towels that were left in the room). Requests were definitely made by our nurse and techs for those things to happen, but whoever was on the other end of the line has a sweet job because they never bothered to do it.

On an amusing note, the pharmacy didn’t have his meds on hand (a specialty one they never have, and the other they didn’t have in the right form) so we were asked to turn over our meds to be dispensed by the pharmacy. (Wonder what that will look like on the bill?) They have to keep his Onfi under lock and key because it’s a controlled substance. His Klonopin is too, but I didn’t turn that over since it’s just for clusters. It’s funny to think he’s prescribed two meds with more street value than the medical marijuana the law prohibits me from having.

Rosie the dog and Connor had an exciting couple of weeks. My parents went to Italy so we had their batsh** crazy full-grown kittens for two weeks. Rosie is in love with Thatcher the black cat. Followed her adoringly and stalkerish the whole time. She also enjoyed chasing Theo, who spent a good portion of the past two weeks hissing at everyone. One of them broke a wine glass. They were allowed to live only because my wine wasn’t in it.

I awoke one morning with four cats in my room looking at me. It was an eerie glimpse into the life of a cat lady, a possible calling I chose to ignore. I emailed my mom to tell her of the terrifying experience and she responded by offering to bring these back from Italy for me:

Random note: Connor and I made the local news. Check it out here.

I leave you with photos of our zoo. Our two cats are not present in the photos as they opted not to set foot outside our bedroom for the duration of this social experiment.

My mom bought them a cat tent for the stay should they become too unruly during the stay...Connor took a liking to it--more than the tent we actually bought him to play with. — My mom bought them a cat tent for the stay should they become too unruly…Connor took a liking to it–more than the tent we actually bought him to play with.

I'm like a cat. I wanna sit in laps. — Me, me! I’m like a cat! I wanna sit in laps!

Rapunzel....Rapunzel... — Rapunzel….Rapunzel…

I don't know what they were doing, but somehow they collapsed the tent down on themselves. — I don’t know what they were doing, but somehow they collapsed the tent down on themselves.

Parenting, Tuberous Sclerosis

Connor just walked his longest distance ever!

July 24, 2014 Rebecca Gaunt Leave a comment

Tuesday Connor walked his longest distance ever independently. He’s been getting better and better at walking with the emotional support of holding a hand or even just a finger, and sometimes even just knowing our hands are hovering over his shoulders is enough. We were waiting for aquatic therapy to start and walking around the pool area for practice when he suddenly let go of my hand and went on his way. His previous record was eight steps in our house. This time he walked half the the length of the Olympic pool. The lifeguard clearly thought I was insane chasing after him, hands at the ready to catch him and whisper-shrieking “Oh my God, oh my God!” As we passed him by I gasped, “He’s never walked this far before!” So then the lifeguard got excited and when Connor finally did go down he joined me in clapping and offering congratulations.

Chris did his part to add to the family excitement Tuesday, too. He mowed the front and back yard without incident, came in, showered, changed, sat on the couch to relax and THEN got stung by a bee. It must have gotten inside at some point during the mowing process as we went in and out. But his throbbing arm is simply the price that must be paid to lord over our neighbors.

I have also been enjoying time in the great outdoors.

My other exercise comes from picking up after Connor. He has always enjoyed starting his day by emptying his toy tubs and pulling all the books off the shelves, but lately he’s been a little too enthusiastic about chucking his belongings behind him. Once everything is in a pile behind him, he turns around and starts chucking everything in the other direction. He is highly amused and excited by this, so I think it’s a stimming behavior.

Which leads me to my plea. While I certainly lack the degree of cleanliness OCD my husband demonstrates, I do have an obsessive need for the house to be clean when people walk in (except for his at-home therapists–I blow their mind when I’m even actually dressed). I don’t care what it looks like five minutes later…but it must be clean when guests walk in. For that reason, you MUST be on time when you come over. The protocol typically calls for a mad rush of throwing all the toys in the correct baskets within the 10-minute window before expected arrival. Until you walk in the door, I must distract Connor from his need to rectify the disgusting clean I have made. It is not always pretty. But once guests have entered and caught a glimpse of the clean floor, I can unleash the kraken.

The weekend before last we went to a social event held by the Georgia early intervention program Babies Can’t Wait. It was a bit surreal as I heard my name and looked up to see someone I hadn’t seen since high school. I had this strange moment of trying to process that intersection of someone from my past crossing into the special needs department of my life. There were the normal “how are yous” and then the awkward trying to figure which questions were okay to ask. I was thinking, “I can ask, right? That’s not weird…is it?” Over and over. She was the first to break the ice and we discussed the two rare genetic disorders that had unexpectedly altered the course of our lives. But these are the things, along with Facebook support groups, that keep the bitterness and the feeling of being targeted by life at bay. Oh, the life paths you couldn’t fathom when you were walking the halls of high school…

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.

Guest Bloggers For TSC Awareness Month, Parenting, Tuberous Sclerosis

This year we celebrate 40 years of TS Alliance’s existence.

June 1, 2014 Rebecca Gaunt Leave a comment

Second Annual “Blogging for TSC Awareness Month” Day 32

by guest blogger Susan McBrine (Oregon)

Tuberous Sclerosis.
Words a parent never wants to hear… Or expects to hear. Yet every day, all over the world, parents are still getting this diagnosis for their child, who may be experiencing seizures, developmental delay, autism, kidney and brain tumors and more .

I got this diagnosis for my daughter over 40 years ago and I must say it changed my life forever. I became an informed, determined, assertive researcher, educator and advocate for making sure that I knew and found all there was to know and do to help her achieve her potential. In the process I helped found Tuberous Sclerosis Alliance and tried to help many other famiilies find hope for better treatments and a better life for their children with this disease .

This year we celebrate 40 years of TS Alliance’s existence. The organization has acomplished so much by advocating for and funding research, supporting families and much more. We celebrate, but I am also saddened that many other young moms are also still going through what I did to get treatment and diagnosis. I am saddened that tuberous sclerosis exists. Yet, as a mom who has raised a child to adulthood and lost her child to this disease, I am grateful for what tuberous sclerosis taught me about life, love and even her death.

Being a parent of a special needs child is life changing in so many ways, but in my case it changed my career and my perspective on life in general. It made me appreciate little things and focus on what is really important in life.

It also taught me valuable lessons on letting go of a child as she grew. I learned to finally let go and let my disabled daughter have more of life of her own, despite her disabilities. It is very hard, when you miss those developmental milestones that non disabled kids have — when your child goes to kindergarten, off to college, work, marriage — to know when and how much to let go and encourage independence in a child who is basically totally or semi- dependent on you. The need to protect our vulnerable child is great and the tendency to overprotect always exists.

It was hard to step back and stop doing for her and let her do for herself. Dressing herself, going on the bus alone, spending the night away from me at a camp, having a boyfriend, and finally living in a group home with friends. All things other kids may do as they grow up, but for moms like us, whose child needs supervison and support in so many ways, it is hard to let go even a little.

Letting go and teaching independence is important so that we don’t actually encourage dependence without realizing it.

Teaching age appropriate behavior to a 20-year old who would just as soon wear Mickey Mouse t-shirts and play with toys, that she is a young adult and must dress and be treated as a young adult is hard. I learned how, with help from many in her life, and from her.

I also was pleasantly surprised by how well she adapted to life in a group home at age 27. I thought she’d miss me so much I’d have to bring her home in a week. Nope! She flourished with her newfound independence and social life with her housemates — something I couldn’t give her at home with just the two of us. I also couldn’t continue to give her 24-hour care while I had to work and sleep. She got fresh caretakers every eight hours who weren’t tired, cranky or had other things to do.

What is hard for parents to admit as we get older (and we will) — the 24-hour care taking can be too hard without help. And the time will come when we can’t do it any more due to our age or illness.

We have to really be realistic about helping our child find a place in the world as an adult without us while we are still around to help them transition. It’s harder if we die and they experience the grief of missing us and have to transition to a new home. That is the letting go and the transition we all worry about the most. We worry no one else will care for her or him as we do.

As a special education teacher of young adults 16 -22, I often heard parents say, “She can’t or won’t do that at home. How did you get her to do that?” Some of my students had very low ability, but were able to work with some support and could learn to do things like cook, load dishwashers and do laundry for themselves. Things their parents didn’t let them do because they thought they couldn’t. It’s always amazing what they can do when we let go. I learned that my very delayed and disabled daughter could do so much more than I ever thought or would have allowed her to do until I learned to let go some!

Every child is different and every state and family has different resources available, but it is something to think about for every parent.

Teaching independence and letting go is something to do gradually. After all, we all want all of our children to be happy, have a social life of some kind, to experience love and friendship, and to be able to support themselves in some way. They can’t do that if we dont teach independence and responsibility to all our children.

Stacia taught me much in life. Tolerance, patience, unconditional love, selflessness and how to see the world through her eyes. Her life was a gift to me in so many ways, although battling her disease was also hell in so many ways.

I am grateful for the support the TS Alliance gives parents today, and for the hope that all our children with disabilities will have better lives to live and increased opportunities to do so in today’s world. We can all help them by increasing awareness of not only TSC, but of all those with disabilities and their need for acceptance, employment, education and a place in society.

Please see Susan’s contribution from last year’s blogging event about the founding of the TS Alliance.

From Becky (Mixed Up Mommy): Thank you so much to everyone who contributed this year! It has been a pleasure to share your stories and read your personal or your child’s triumphs. I leave you with some artistic contributions from TSC warriors.