Tag Archives: medical marijuana

What’s blowing my mind tonight?

August 27, 2014 Rebecca Gaunt 3 Comments

So glad you asked. What’s blowing my mind is that it is so hard for sick people to obtain medical cannabis when THESE are the kind of people that oppose it.

And my personal favorite from Captain Creeper who apparently is stalking me even though I wasn’t featured in the WSB story under which this was posted:

Yep. That’s me. Magnum PI(diot) found me out.

Update–My little friend’s real first name appears to be Darin and he’s dating someone named Jessica Callahan. It’s hard to fight the temptation to swing by her workplace (on her profile) and ask her if she knows what a POS he is. He appears to be in the NW part of the metro Atlanta area (Cherokee or Cobb, maybe Woodstock or Kennesaw) with several connections to people that went to Pope High School. And I’ve satisfied my curiosity about what he looks like thanks to her page. Here’s his Facebook with his racist rants and if you’re curious about his pictures, check out his girlfriend’s page. And if you know who he is, please let me know.

And I guess this is why I get the pleasure:

Another update : Think I’ve found him AND his mug shot. You’d think someone so opposed to marijuana would have a clean record 🙂

Current Events, Medical Marijuana, Parenting

When will Georgia’s medical cannabis refugees come home?

July 17, 2014 Rebecca Gaunt 6 Comments

In the months since Georgia’s 2014 legislative session ended without passing proposed medical cannabis legislation (due to political games, not lack of support), the community of medical refugees in Colorado has grown.

Notice anything funny about the south? Sing with me! One of these things is not like the others… Admittedly, the laws in the bordering states are of varying efficacy. South Carolina, for example, is only an immunity law that protects you if you are caught with high CBD strains, but does nothing to help patients obtain it. Florida, on the other hand, is allowing for the growing and selling of high CBD strains next year. If Amendment 2 passes in November, Florida will be able to enact an even more comprehensive program that will benefit more people and conditions.

So now meet some of the Georgia families that are waiting to return to their homes, families, doctors, therapists and friends.

The Cox family

The Georgia bill HB 885 was also named Haleigh’s Hope in honor of this little girl who turns five this month. Shortly before this year’s legislative session ended, Janea and Haleigh packed up and moved to Colorado because Haleigh, who has Lennox-Gastaut syndrome, was suffering life-threatening seizures that caused her to stop breathing. Her dad, Brian, was unable to go with them because of his job and now they have to live apart.

Haleigh before.

Haleigh after.

As I scrolled through the Hope for Haleigh page I was struck again by the change in her. Janea takes and posts a lot of pictures and I could see the improvement, but in looking for before pictures, I was struck by how difficult it was to find photos of her looking at the camera or smiling. Now we see quite a few of those. Sitting in a swing by herself wasn’t possible a few months ago. She also said her first word in Colorado — Mama. Haleigh is not seizure free and still has some rough days, but she has also had some seizure free days. That simply didn’t happen before she started on Haleigh’s Hope provided by the Hope Foundation. Janea has said that she felt like she was finally meeting her child these last few months. Haleigh has even been able to wean off one of her seizure medications. But living apart from Dad is emotionally taxing and they hope that 2015 will bring legislation that will allow them to be a family again.

The Oliver family

Tripp had his first seizure on April 9, 2009 and was diagnosed with Dravet syndrome. He has tried more than a dozen medications since then and in April of this year, he and his mom moved to Colorado where he started THCa through Realm of Caring. It was hard to leave Dad and his team of therapists who have spent years working with Tripp in speech, occupational, feeding and physical therapy, but since then he has had two separate three-week streaks in which he had no convulsive seizures. Mom describes him as brighter and happier with improving speech capabilities. You can follow his journey at Tripp’s Trip.

The Klepinger family

The Klepingers left for Colorado late last year. They still own their Georgia home with the hopes they can return to it and their extended family and support network. Hunter is still doing well on Charlotte’s Web. I shared Hunter’s successes previously in this post. Since then, Aaron and Dawn have a welcomed a third child, lovingly nicknamed their Colorado Tumbleweed.

Hunter with Rep. Allen Peake, sponsor of Georgia's 2014 medical cannabis bill. Peake flew out to Colorado to meet the families. — Hunter with Rep. Allen Peake, sponsor of Georgia’s 2014 medical cannabis bill. Peake flew out to Colorado to meet the families.

Aaron invites any legislators with doubts to come to Colorado and meet the kids. “Seeing is believing,” he says.

The Clark family (follow them at Hope for Caden)

“My Caden has had thirteen completely seizure-free days! Understand that was never a possibility before! He no longer seizes during the daytime at all, only at night,” Kim Clark posted in May of this year. “There was no hope before this, nothing. Caden’s life was seizing somewhere between ten up to into the hundreds times a day. There was no life. Coupled with the side effects from medications, my boy was miserable. Now we are so blessed that he is 10 years old and we are trying to learn how HE CAN LIVE!”

Kim posted this photo recently with the caption "Slowly healing." — Kim posted this photo recently with the caption “Slowly healing.”

But Caden’s healing has come at a price. The Clarks are also a split family. Kim is in Colorado with the kids and Dad Chris has had to stay behind in Georgia for work. They share the same reality as the other families living hundreds of miles apart. Dad can come visit them, but they can’t go home to see him because they can’t legally travel with the oil. Recently, Kim and Chris traded places for a short period so she could make a trip home.

Kim sits on the front porch of her Georgia home, possibly for the last time, as they plan to put it on the market due to the expense of maintaining two households.

The Sumlin family

Sheryl and her daughter Trinity arrived in Colorado earlier this summer.

It’s early to gauge the response of Trinity’s seizures to Haleigh’s Hope since mom opted to titrate up to the usual starting dose, an incoming tooth is causing seizures and Trinity is requiring supplemental oxygen as she adjusts to the altitude. However, Mom is seeing beacons of hope in small things like wiggling her toes, calmness, awareness, making sounds and sleeping better.

But leaving her support network has been extremely tough. “It is harder than I thought it would be,” Sheryl says. “Although it’s beautiful here, it is not home. My daughter’s school and that whole network has been a huge part of our lives for the last 5-6 years. Also, friends who knew us since forever. I think it’s unfair that we have to move so far to have an opportunity to try this medicine.”

Sheryl is out there without nursing help or a car. Prior to flying out she donated her vehicle to another family in need. A fundraiser was set up by a third party to help her with expenses, but she never received any of the donations that were made on her behalf. She is grateful to the Journey of Hope foundation, a non-profit started by Rep. Allen Peake, for coming through and helping her financially with the move.

The Lowe family (follow them at Paws for a Princess)

Corey worked tirelessly during the 2014 legislative session to persuade Georgia legislators how badly we need access to cannabis. She was devastated when it didn’t pass, and by May, her daughter’s seizures were getting out of control. She had a tough decision to make.

Interviewing with CBS 46 about their impending move after Victoria was admitted to the hospital.

In June, with help from Journey of Hope, they packed up the car and drove across the country leaving behind Corey’s job, her husband and Victoria’s siblings.

Since starting on Haleigh’s Hope, Corey tells me Victoria has had an 80 percent reduction in seizures. From several a day to this:

The incredible eye contact and improved communication Victoria is showing now helps alleviate the pain of leaving their home, but Corey still worries.

“It’s great, but at what cost,” she told me. “How will this affect my children, who I left behind, in the long run? Will they resent Victoria because I had to leave them behind? How is not having a mom around affecting them?”

She also feels guilty about the families that simply don’t have the means or circumstances to move across the country. “The absolute worst part about having this medicine is seeing kids back home that need it. It’s hard to celebrate the success when kids are going into the hospital because of seizures.”

The Klepinger, Clark, Lowe and Sumlin family sharing their 4th of July celebration in Colorado.

Related Posts:

The Side Effects of Medical Cannabis

U.S. Representative John Fleming Is Out to Prevent Access to Medical Cannabis for Our Kids

Current Events, Medical Marijuana

Rep. John Fleming of Louisiana is a perfect example of what’s wrong in D.C.

June 24, 2014 Rebecca Gaunt 7 Comments

Representative John Fleming of the fourth district in Louisiana is extremely opposed to medical cannabis. While he does see a place for pharmaceutical versions such as GW Pharma’s Epidiolex, marijuana scare tactics appear to be a major part of his agenda and he has no interest in helping desperate parents save their seizing kids. He has no problem with dying children waiting while researchers fight through the tangle of red tape that is marijuana research and the lengthy process that is FDA clinical trials. Oh, those trials have been fast tracked and we can get into studies (sound familiar, Rep. Sharon Cooper?). Never mind that most of us can’t get into those studies. Connor doesn’t qualify with TSC, and even parents who have children with the requisite syndromes are unable to find openings. FDA fast tracking just means they shave some years off the years it will still take to approve it (Connor’s most effective med, vigabatrin, had its first clinical trials in 1979. It was approved in the States in 2009, years after other countries made it available).

Rep. Fleming is very, very worried about recreational use. Our children are nothing but Trojan Horses (his words) used by those who want full legalization for recreational purposes. He is so worried about recreational use and the fear that someone might find a way to use medical cannabis for fun, that he is willing to sacrifice the lives of sick and dying children. He is not interested in hearing our stories of our children that need it or those that are already benefitting from high CBD strains and THCA in legal states. He voted against the recent Rohrbacher amendment to prevent funding the DOJ for raiding state medical marijuana programs. In fact, if you try to tell him about your child on his Facebook page, he will delete it. He can’t have the public know who he’s hurting with his over-the-top antics.

It’s his Facebook page that brought him to my attention, as well as to the attention of some other parents dealing with seizure disorders. He had posted about a speech he gave on the dangers of marijuana so several of us posted on the thread. Many of our comments got deleted. Several of us are blocked from commenting further. I will say, in the interest of full disclosure, that perhaps I implied I had doubts about his abilities as a medical doctor since I came across an article about how he blocked doctors from being able to discuss the medical marijuana option with veterans because he didn’t want them exposed to an addictive, harmful substance. Yet you never see him express any concerns about the highly addictive, dangerous nature of many pharmaceuticals. Prescription pain pills are some of the most highly abused drugs, but that doesn’t concern him. But I don’t think I got deleted and banned because I might have come off as insulting (there was no swearing or name calling). I think I got deleted because I talked about my kid and about how dangerous one of his prescriptions is. (And to be clear, I am not part of the anti-pharmaceutical movement, nor do I believe that marijuana is a cure for everything or that it will work for everyone. I think pharmaceuticals have their place alongside options like cannabis. I just ask that my zip code not determine my access).

I’m not the only one. Several people who talked about their kids got deleted. Interestingly, he started debating with one of the parents–also a doctor –and did not delete or block him. However, he DID delete a link to a YouTube video that this father had made about his daughter and medical cannabis to educate the public. Interesting. Rep. Fleming is so passionate about Facebook page maintenance that he even stayed up until midnight on a Friday to edit, delete, and condescend. Yes, condescend. You may wonder why I find this particular representative so interesting when he is obviously not the only one who opposes helping our kids. Well, though I was blocked, I still found myself quite fascinated poring through his page. It became clear that his page serves no purpose but to rile people up and be divisive. It’s not even about whether I agree with his views or not; it’s that he clearly uses it as a tool of stirring discontent. Don’t get me wrong. I pretty much expect to see Obama-slamming on most GOP pages, just as there is some over-the-top Obama adoration on the pages of many democrats. But I looked over a few other pages from other parties and none gave me the same disturbing hateful feel that I got from his. I expect these pages to have opinions and criticisms. But what I found from the other ones I looked at is that I could also find positive comments about something they were involved with, or that I didn’t have to scroll far to get an idea of legislation they were involved with. Fleming, on the other hand, just seems to bitch and moan. I know his opinions, but very little of what he’s doing about it. Those posts are good and buried. I’m in no way saying he is the only one who behaves like this, but there are just too many people in Congress for me to look at all the pages. I looked at four other Republicans and four Democrats just to see if this is the norm, but saw nothing like this. All the pages are going to have rude comments from the public…the difference is that most of these other pages don’t seem as heavily moderated in that area. So when you make a point to delete and moderate heavily, you are implicitly showing support for what you leave in view.

What I found especially interesting is the way he chooses to interact as an elected official. I’m sorry, but our representatives should set an example of decorum. You are going to have rude comments on social media, and there is a line people can cross where you are well within your rights to delete. But he’s deleting to twist the story and those that get to stay, but disagree with him, get a condescending attitude the likes of which I’ve never seen.

Here are some screen shots from the medical cannabis discussion with parent of sick children. He keeps talking about legalization, though many commenters are focused on rescheduling. He’s also completely in the dark it would seem about how damaging the schedule 1 status of marijuana is on research. But he won’t be told otherwise!

This flat out lie:

And excerpts from last weekend’s marijuana discussion in which it was necessary to talk down to and insult parents desperate to save their kids. I’d tell you to check out his page to get the full conversation, but alas he is forever editing and deleting. Who know what’s missing and edited by now.

Excerpts with one dad.

Excerpts with another dad.

Please keep up with developments? Really? By the way this dad is the doctor I mentioned earlier. The other dad’s response to Fleming’s endless egocentrism.

Once again, Dr. Fleming, learn the difference between rescheduling and legalization.

And the one I take very personally because this mom has a child battling the same disorder. (Update: Since I first posted this, Rep. Fleming has removed all the comments by this mother, yet left his own responses).

I simply must interject here…They will just GIVE US the medication if our kid is going to die? Just like that. Anybody remember Josh Hardy who made the news last March? He is seven. The pharmaceutical company denied him compassionate use. They didn’t reverse their stance until the public pressure became too overwhelming. Rep. Fleming truly lives in his own world–a world where pharmaceutical companies give people drugs when we say “pretty please with sugar on top.”

Not one ounce of compassion in that entire thread.

For the love of God, why can this man not make the distinction between legalization and rescheduling?

Yeah, pretty sure we explained that (in now deleted comments) that this wasn’t an option for everybody and some kids will be dead before Epidiolex goes to market. Not to mention, Epidiolex is one particular formulation. It’s not necessarily the same as what some of the kids are responding to. It may work for some, but others will need whole plant medicine.

Like I said, he loves to delete.

So some of the parents got to stay and debate with him. I guess those of us that were deleted didn’t have anything constructive to say. So in the interest of helping others, I’m going to share some screenshots I took from other threads on different topics so that you will know what Rep. Fleming considers positive contributions to the discussion should you wish to engage without being banned. And please know that in an older thread, he has stated that cursing and name calling won’t be tolerated. But I guess that’s only if it’s about him.

Though some who don’t know me may assume I’m targeting him because of his party, that is absolutely not the case. If he had come to my attention as a Democrat behaving in this manner–I’d say the same (I float somewhere in the middle annoyed by extremes on both ends). He’s a perfect example of what we don’t need in D.C. making decisions for people. Someone who makes it very clear that he can’t and won’t work with his colleagues unless they tow his line and won’t listen to the other side of the story. He’s there to represent his own interests. I actually found in Georgia that the bipartisan support for our kids was amazing.

But perhaps I’m being unfair. He does get his information from reputable sources.

Plus, Rep. Fleming has but this one request.

Of course, don’t expect HIM to abide by it.

He really can do it all. He gives grammar lessons.

He’s a Biblical scholar.

A civics professor.

Hmmm…be a statesman…good point.
His response:

Historian.

Economics professor.

He gets by with a little help from his friends.

I just wish he cared as much about the kids that have been born as he does the ones that are in utero.

Maybe it’s time Dr. Fleming goes home to Lousiana and focuses on his 36 Subway sandwich shops in North Louisiana.

We all have our beliefs and biases, and hey, I don’t necessarily like all the people being referenced here either, but if this is how you think a United States representative should conduct himself, you need to reassess.

Please check out this YouTube response some parents put together for him.

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

A Parallel Universe

May 29, 2014 Rebecca Gaunt 2 Comments

Second Annual “Blogging for TSC Awareness Month” Day 29

by guest blogger Sara Weathersby (Decatur, Georgia)

At a UGA football game circa 1999. — At a UGA football game 1998 or 1999.

Unlike many who have blogged about TSC, I am not diagnosed with it or caring for someone who has the diagnosis. I became aware of TSC and the havoc it wreaks through my friends Becky and Chris and their son Connor. Becky and I went to college together and remained friends in the following years. We were delighted to find out we were pregnant at the same time. Connor was due just a month before my second son, Malcolm. My older son, Max, was a young toddler at the time, so I would share product recommendations and advice with Becky over the next several months.

One day, Becky told me that the doctors found something irregular with Connor’s heart on an ultrasound and were going to observe him more carefully and call in a specialist to examine him once he arrived. I honestly, confidently believed with every fiber of my being that the doctors were being overly cautious. If ever there’s a time for doctors to be so cautious, it is certainly when the health of a baby, particularly my friend’s baby, is at stake. Neither of us were very worried as we talked about ponytail holders and chapstick going into the bags to go to the hospital.

When Connor was born, Becky and I texted back and forth. The delivery went well and she and Chris were just waiting for the nurse to bring him back to them after some observation. They waited to hold and cuddle their precious new son. I waited for the obligatory pictures to pop on my phone. They waited to gaze into his eyes and memorize every inch of his perfect face. I waited to hear once and for all that everything was great.

Becky's wedding reception 2010. — Becky’s wedding reception 2010.

But it wasn’t great. While in the nursery a nurse noticed Connor was having a seizure. While Becky and Chris waited, the nurses and doctors were trying to figure out what was going on with Connor and how to treat him. They diagnosed him with TSC and kept him hospitalized for a month. They determined that he would need neurosurgery to remove a tuber from his brain to hopefully stop the seizures. The doctors expected him to have developmental delays but didn’t have a clue what that would look like.

This is not the kind of thing that happens to me or my friends. We work hard, pay taxes and make good choices. How could this be happening? How could someone that I know and love have to go home from the hospital without her baby? What could I possibly say to Becky and Chris? I certainly had no “been there, done that” mommy advice to offer.

Somehow, Becky and her family were absorbed into some kind of parallel universe where you don’t get to room in with your newborn and take him home to his new nursery in a day or two. Instead, my friend stayed at the side of her baby’s incubator surrounded by tubes, wires and machines that allowed the doctors to best figure out a plan for his treatment.

Meanwhile, I’m waddling around, near the end of my own completely healthy pregnancy with my completely healthy son. I wondered what in the world I had to offer this friendship while Becky was going through so much. I felt a strange sense of guilt and sadness. All the while I shared in Becky and Chris’s joy that their son was born.

Sara's wedding 2009. — Sara’s wedding 2009.

If I was feeling all these emotions, how much more intense it must have been for Becky and Chris! I grieved for all the expectations, spoken and unspoken, I had for this new phase in my friendship with Becky. We were both moms now and our sons were supposed to play together. But what now? How was TSC going to change our friendship? I determined that it was better to show up not knowing exactly what to say or do and risk putting my foot in my mouth than to do or say nothing. Becky and Chris sat in that parallel new parent universe where nothing comes easy. They were so sad that Connor was having seizures and had been diagnosed with TSC but yet overjoyed to have a son. They were devastated that there son is not typical but hopeful that his growth and development will come along such that TSC will not put any limits on what he can do.

In the universe I’m accustomed to of course parenting is tough and an emotional roller coaster. In the parallel universe where Becky is, it seems more intense. There are more doctors and appointments to keep, more worry, more money to spend, more resources to find. Everything is just more. Meanwhile, my own little one made his way into the world and disrupted everything in just the way you expect. How do I step into this strange place where Becky and Chris are without sounding trite or lacking compassion?

It actually turned out to be pretty easy to be maintain our friendship. We just kept texting and talking about our boys. Connor’s milestones look different

Connor in the cow costume, Malcolm as the monkey, Max as the big pirate, and their friend David the pirate.

from Malcolm’s. Connor has to work so much harder to get from milestone to milestone, but he’s doing it. I was afraid Connor’s diagnosis would put awkwardness in my friendship with Becky because I just wouldn’t understand how different it is to parent a child with special needs. When the boys play together (as much as they do as young toddlers) it’s clear that Becky and I have a lot more in common as moms of toddlers than there are differences in parenting a special needs child and a typical child. The fact that Connor has special needs actually didn’t alter our friendship all that much. Perhaps that’s because Becky and Chris love Connor so completely and have managed to accept that TSC is a part of their lives now. They haven’t let TSC cast a shadow on their lives or rob them of the joy of parenting. They have made it easy to ask questions about TSC and what it means for Connor.

As the months went by, I started to realize the idea of the parallel universe where families with special needs children live wasn’t really accurate. We buy the same diapers, and clothes for our kids.

Malcolm doesn't mind crawling around with Connor, even though he can walk already. — Malcolm doesn’t mind crawling around with Connor, even though he can walk already.

We live with the same healthcare system. Instead of thinking of families with special needs children living off and away somewhere doing mysterious special needs things they don’t want people like me bugging them about, they’re actually at the same Target store I go to. We live in the same world but unless you know someone whose child is ill, you can keep going along in your own circles and never hear the stories of these families and their precious children.

In Georgia, we recently had an opportunity to legalize medical marijuana for children with seizure disorders. Our state representatives failed miserably to pass the very popular bill. This experience made it clear to me the importance of raising awareness of TSC and the reality faced by families with special needs children. Just because a policy, or law or healthcare plan works for you or at least doesn’t hinder you doesn’t mean that you don’t have a voice in improving the lives of our most vulnerable children. Those of us who are blessed with healthy children owe it to our friends, relatives and the people in our communities who are raising special needs kids to keep investing in those relationships even when, and especially when, a child is diagnosed with an illness or syndrome. We can make our healthcare system work better and our government more responsive. But first, we all have to be aware.

In the dorm -- Myers Hall at UGA -- in 1998. — In the dorm — Myers Hall at UGA — in 1998.

Both pregnant at Becky's baby shower 2012. — Both pregnant at Becky’s baby shower 2012.

Parenting, Tuberous Sclerosis

Connor started walking!

May 14, 2014 Rebecca Gaunt Leave a comment

I’ve been doing a terrible job of updating on Connor lately. This post on medical marijuana went viral a couple months ago, and then a few weeks ago, this post on Athens, Georgia was even bigger with more than 9k shares just on Facebook and 50k views. So if you have been wondering why I have been mostly absent from the blogosphere, it is because I was attempting to ride the wave of popularity for the rest of eternity. Also because I was being lazy.

Connor’s been doing really well in spite of the fact that we’ve been seeing a few more breakthrough seizures on the modified Atkins diet. He took his first independent steps in the pool at aquatic therapy and about a week later, he was standing at the ottoman and suddenly marched away getting in a good 4-5 steps. I wish I had a recording of my reaction–looking up and rubbing my eyes thinking I was seeing things.

He is doing amazing at putting puzzle pieces in the correct spots and putting objects into containers. He has long had a love of destruction, but lacked any desire whatsoever for reconstruction. I’ve now seen him, in the course of two separate evaluations, doing a most spectacular job of putting things away, leading me to conclude that he has been keeping this skill under wraps so that he won’t have to assist in cleaning his playroom.

He found his music therapist’s wooden train whistle quite enjoyable so my mom bought him one, which led to another milestone of bringing us objects in order to get a desired result. He drops that whistle in our laps and makes us blow it until we are dizzy. He has also started bringing us books and dropping them in our laps, then climbing on the couch next to us to hear them read. He’s awesomely relentless. Yesterday I was dozing off when he dropped Little Blue Truck on my stomach. When I didn’t respond immediately, he plopped it on my face.

It’s so great to watch his cognitive growth. Although he still has no words, he is understanding more and more. We can read books and he will point to objects on the page if we ask. We were working on a puzzle and were missing the lion. I was able to verbally instruct him how to go get it from under a piece of furniture in the room. He’s really into cars and trucks and I’ve noticed that he typically plays with two at a time, always choosing two that are similar in scale, which I find very interesting. I find it positive that he notices differences like that, as if he knows that a Mustang will never be larger than a fire truck! I was excited the other day when he was playing with his wooden hammer to push balls through the hole of the toy and, for the first time, when the ball came back out of the toy, he picked it up and put back on top to repeat the process.

We are dealing with a bit of separation anxiety. He does well when I drop him at Mother’s Morning Out, but phasing me out of the room at music therapy isn’t going so smoothly. Yesterday he had an OT evaluation and I watched through the mirror as he banged on the door to get out and find me. I hope he never notices how boring I actually am.

He’s still eating more pureed food than I would like, but every so often he surprises me by coming over and wanting to eat off my plate. We were late to aquatic therapy once because I was so overjoyed he wanted to share my salmon at lunch one day.

He had a one-hour EEG last week which showed improvement from the last one he had months before we started the diet. Results were still abnormal, which isn’t unusual for TSC. He had spikes coming from a couple of places that have shown activity before, but his left occipital lobe was quiet in contrast to his last EEG. Also, there was no subclinical seizure activity this time around.

Several of the families that worked to try and pass HB 885 here in Georgia have been interviewed for a documentary on the efforts to pass the medical marijuana bill. The filmmakers also recently traveled to Colorado to meet with families that have relocated there to treat their kids. I don’t know if my portion will make the cut, as undoubtedly someone else will voice similar concerns much more eloquently, but I enjoyed the process.

In the meantime, two more Georgia families I met during the legislative session are getting ready to make the move out west to save their kids from unrelenting seizures. The three Georgia families I know that are already there are already experiencing tremendous results. Rep. Allen Peake, champion of HB 885, has started a non-profit called Journey of Hope to help these families get the funds to go. Personally, I hope Sen. Renee Unterman has donated considering she played a pivotal role in killing HB 885 and devastated so many families to tears. I look forward to the 2015 legislative session, though I probably won’t waste much time on my own state senator, Judson Hill, this time around due to this

Since we bought a zoo membership this year, I will leave you with some pics from our two trips so far this season.

Current Events, Medical Marijuana

HB885 — the Georgia medical cannabis bill — died tonight.

March 21, 2014 Rebecca Gaunt 2 Comments

And when it died, this is what it looked like.

Glad I couldn’t make it down there today. I wouldn’t have wanted to watch this celebration in person. I’m so sorry for those parents that did have to see it live. A live stream was more than enough for me. I cannot begin to express the countless hours, time and money (parking, travel, childcare) that these parents put into this. Representative Allen Peake did everything he could and for that we are thankful.

Short version — most of which I stole from someone on Facebook — because I’m tired, ticked off and feeling a migraine coming on:

The Senate refused to pass HB 885 unless an autism insurance bill was attached because the House refuses to vote on the autism bill alone. Senate passed HB885 with the autism bill attached, then sent to the House who refused to vote on it with the attached autism bill.

Then late tonight, with HB 885 stalled in the House, the House sent SB291 (already passed in the Senate and unrelated to HB 885) to the Senate for a vote with the HB 885 language included. Senate refused to vote on SB 291 because it did not have the desired autism language.

And with that, the state of Georgia made it clear that it does not care about kids whether they have epilepsy or autism. But they do care about their end of the night paper party!

Current Events, Medical Marijuana

An Open Letter to Senator Judson Hill of Georgia District 32

March 20, 2014 Rebecca Gaunt 1 Comment

[Update: Judson Hill stepped down from the state senate in 2017 to run for the the seat left empty by Tom Price, who accepted a role in Donald Trump’s administration. Please read this if you are considering voting for him]

Dear Senator Judson Hill,

I am shaking with anger right now. The Georgia Senate just voted moments ago on HB 885, the medical cannabis bill. As it was discussed, my son’s 12-day seizure free streak ended at my feet. The bill passed 54-0. Two people didn’t vote. Where were you?

You have constituents that have tried to reach you for months. You have blown us off. You have tweeted and posted about your work on on SB 98, a bill to prevent healthcare plans from funding abortions. But you are silent on two bills that help children who have already been born. Two bills to benefit children: one bill to make insurance companies provide coverage to children who need therapy due to an autism diagnosis and another to help parents obtain a medicine that could help children with severe seizure disorders, and you did not vote on either. Why? Clearly, you have constituents that want to be represented. Perhaps I’m outnumbered? Maybe you heard from more people that didn’t want you to support these measures than did support. In that case, you didn’t represent them either.

I first e-mailed you on January 9. I did not hear from you, but given that the bill started in the House, I figured there was time, and that I’d hear from you when it became a Senate issue.

I e-mailed you again on January 31.

And February 6.

And February 24 in regards to SB397–the autism bill you didn’t vote on.

And March 7. Twice.

And March 11.

Plus an e-mail from my husband.

On February 5 we had a scheduled face-to-face meeting. I came down to the Gold Dome with my son and arrived at your office at the scheduled time. You were not there. You had not come in yet that day. No one could tell me when you would arrive.

On March 10, I attended your town hall meeting that you scheduled. You did not show up.

I tweeted you on several occasions:

March 8

and March 11

and March 13

and March 19. Twice.

I have never received any response from you whatsoever. I do not know of anyone in the district that has, and I won’t even get into how many times you’ve been contacted by others I have talked to. My efforts to reach you pale in comparison to the efforts of another nearby family who has a far more dire situation.

I guess you can afford to treat your constituents that way when you are unopposed.

But someday you won’t be, and I can’t wait. I will be there and I will be vocal.

Sincerely,

One of your many irrelevant constituents

Update:

I finally sorta kinda made contact with Judson two years after I posted this letter. Apparently, the key to getting his attention is his wife. Rep. Allen Peake had posted on his public page about his disappointment in the failure of the 2016 Georgia legislature to expand medical cannabis. Senator Hill’s wife commented and the following thread resulted on that post.

I refrained from pointing out that the family he spent time with was the one that received the most press this year.

But this is how he handles “problem” constituents.

Current Events, Guest Blogs, Medical Marijuana

Medical Cannabis and Political Games

March 15, 2014 Rebecca Gaunt 1 Comment

Guest post by Mixed Up Daddy

For those of you that have wondered, yes there is a Mixed Up Daddy that walks the path of life with Mixed Up Mommy. Probably more astonishing to some (including my family and close friends), I even can write! Although let me start by saying I don’t write nearly as well as my wife.

Also, before I get into the true reason of this post, let me just say how proud of my wife I am, not only for writing this blog and educating so many on TSC and our journey through it, but also for being an incredible wife and best friend to me, and of course the best mom ever to Connor (no offense to the other moms out there!). I also want to thank the little man himself, Connor. He is such an inspiration to me, and I only wish I could have a little bit of the strength and courage he shows every day.

Now on to the reason for my first foray into blogging — a certain state representative here in Georgia. As I am sure you are all aware from reading Becky’s blog, there has been a push in 2014 to legalize medical cannabis oil in Georgia — oil that could potentially not only help with the quality of life for so many like Connor, but could potentially be lifesaving. It goes without saying how wonderful it is to have State Representative Allen Peake of District 141 who was willing to champion this cause for so many on our side. He did this knowing it was going to be a tough fight and one that could potentially end his political career. It is refreshing having politicians who, even though they may lose their political career, are still willing to take on the hard issues because it is the right thing to do! I applaud you sir!!! I only wish we had more like you at every level of government.

But that isn’t the representative I came to write about. I also didn’t come to write about my State Senator who, although he is in the state senate to represent myself and the rest of his constituents, never returns emails, voicemails, Twitter messages, stands you up for appointments, and doesn’t even show up for his own scheduled town hall meeting (and let me add this is not just my experience, but dozens of his constituents’ experiences). Nor am I here to write about how wrong it is that our government (both at the federal and state levels) take off every other year from tackling the hard issues because “it is an election year”. Again, there are some great politicians out there that don’t do this, but I am sick of hearing this. You are elected to represent us, each year and every year. I am also not here to tackle the comment made on the floor of the Georgia House of Representatives during the debate on HB885 by a freshman politician that when he took office he was told by other politicians that freshmen congressmen and congresswomen should be seen and not heard. Since when do those who elected a new member to represent them suddenly not have a voice? To me this is nothing more than bullying of politicians by other politicians. Thankfully the above referenced representative did not listen to those politicians, but instead gave a great speech and represented those from his district. On a side note, don’t get me started on the all too common practice in politics of “the more you donate, the more you matter and get access.” Maybe that is how I can get access to my state senator?

Okay, so maybe I got to a few items, just not in the detail I could have.

No, I am here to talk about, and give my opinion — no one else’s — on Georgia State Representative Sharon Cooper of District 43. I did not know who Sharon Cooper was before this process as I do not live in her district and did not get involved in state politics. But after this process, oh wow! Now I readily admit I am biased when it comes to the topic of cannabis oil, but my issue with Sharon Cooper isn’t so much on this topic, but the way she has conducted herself during this process, and I can only assume, how she conducts herself in general down at the Gold Dome (the Capital in Georgia is referred to as the Gold Dome). I also will say that she voted for this bill twice — once in committee and once in the full House vote. But looks can be deceiving. In my humble opinion she has actually been trying to kill the bill behind the scenes. I will get to that in a moment. Some though will say, “Why would she vote for the bill if she didn’t want it passed in reality?” Well that is where I question how she does things. Based on parents who were in the House during the vote, she was one of the last to vote. Again it is just my opinion, but my guess is that she was seeing how the vote was going, and in “old school politician” mode, chose to vote for it as it isn’t easy to be a “no” vote when the vote is 171-4, but it is easy to hide as a “no” vote if the vote were say 104-71. (I know old school dirty politics, I was born and raised in Chicago, where that was invented). No, an “old school politician” would vote for it (knowing that is what the public would see), and then behind the “closed doors” of the capitol try to kill the bill (luckily the doors of the capitol of Georgia are not as “closed” as she thinks). My issue here is that she has a responsibility to her constituents to show them how she truly votes on the issues, not resort to the all too common politics of today of “I will do whatever I need to do to get reelected”. I have no problem with my elected officials voting contrary to my opinion on issues, as there is no way we would see eye to eye on every issue. We should not have to ask that they vote accurately though so we can actually make an informed decision during elections. We deserve that much!

Now you may ask, “How was she trying to kill the bill?” Behind the scenes at the Gold Dome she was passing out a flyer on the “Truths” (my wording) of HB885, yet there were several facts that were wrong on it. I am not sure if she just got the facts wrong and didn’t do the research, or if she did this on purpose, but either way that is unconscionable, and although it is common in politics, has no place. Let’s also not forget that her position on some items is ever changing. Take Epidiolex (a pharmaceutical cannabis product that is currently going through FDA trials and shows some great promise) for example. At her committee meeting there was testimony by a woman — a family values advocate, not a doctor –who said Epidiolex could be here in Georgia in 30 days, yet there was also testimony by a respected neurologist (Connor’s doctor, and many of the other children that could benefit from cannabis oil) who said he was in the process of getting DEA approval to run an Epidiolex trail, but it was a long and arduous process. So who does she back during the meeting? The non-doctor testimony — never mind the fact that it was a lie. She would correct that in later speeches and comments though. She could have also found out more about how it is such a long process by watching the show Weed 2 that recently aired on CNN and was done by Dr. Sanjay Gupta. Of course this is the same congresswoman who called into question Dr. Gupta’s credibility during her committee meeting. Never mind Dr. Gupta is a well respected neurosurgeon, assistant professor, and journalist. She also cut off more than one parent during their testimony, including one that she would later reference in her speech on the House floor regarding medical cannabis, although twisting and misrepresenting his story to fit her ways.

Representative Cooper’s big idea on the subject is that we have an alternative FDA medicine — Epidiolex — at our disposal. Unfortunately that medicine is not readily available and we have no idea when it will be (most likely years based on other FDA timelines). Currently it is only in trials, very limited trials (we are talking 125 people, and based on trials that are trying to get up and running, at most maybe 2000 people, but probably less, in the future). She also has said that Children’s Hospital of Atlanta has told her they are open to do studies on Epidiolex, yet when contacted, CHOA said they have no interest in doing a study on Epidiolex at this time. I have no idea why the parents are getting different information than Representative Cooper, but we certainly aren’t being told what she says she’s hearing (maybe “old school politics” again). What do these parents and adults do in the meantime? Also, let me point out that most patients have exhausted all available FDA-approved meds that are out there for their conditions. Let me also mention that although I am sure there are some incredible people working for the FDA, let’s not forget that the top levels at the FDA are political appointees, and that big pharma is an incredibly powerful lobby and big contributors to political campaigns. Let’s also not forget the side effects that come with the FDA-approved meds that are taken every day — possible vision damage, kidney failure and liver damage to name just a few. Or that there have been FDA-approved drugs that have then been recalled.

I am digressing though. There are some incredible parents we have met along this journey that are a lot better at giving examples of her lies, and if they cannot get them published in the Atlanta paper, I am sure my wife will give you a forum to get your message out. Since the Atlanta paper allowed an editorial by Sharon Cooper though, I certainly hope they give “us” a chance to get the truth out there. Again, this is about her shady politics, though. This is what the general public has grown sick of in America. We expect our politicians to act in a better manner. I only wish I lived in her district to run against her. In Georgia though, we are sort of set-up where the common man can’t run. We only pay our politicians less than $18,000 a year (no, I am in no way advocating for higher pay), so unfortunately unless you are a business owner, or independently wealthy, it is almost impossible to run as you can’t raise a family on that pay. As great as my company is, and they have been incredible throughout our whole journey with TSC, I am pretty sure they are not going to let me take the first three months of the year off. And how I would love to run against our state senator so that everyone in our district could be heard and represented. I deserve to be heard and represented; we all deserve to be heard and represented!

Sharon Cooper was passing out the original in black to members of Congress. The red print reflects changes made by two of the parents so it could be passed out by HB885 supporters to set the record straight.

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