MAD is helping the seizures!

I have not used our Seizure Tracker app for three days. We have had a few seizure-free days here and there since I started tweaking his diet a couple months ago, but three days in a row isn’t so common and is pretty exciting. I’m not gonna get ahead of myself and say there won’t be future break-though seizures , but I’m so relieved to know diet therapy is truly helping. It does NOT work for everyone, so I’m thrilled that it is working for Connor.

If MAD does do the trick, it saves us from moving on to the more extreme ketogenic diet which would force me to become an organized planner, the absolute antithesis of what I am.

To be honest it hasn’t even been hard due to Connor’s delays. Since Connor is still a bit fickle about textures, he has never developed a taste for a lot of the stuff other two-year-olds have. He doesn’t eat chips and cookies. A good portion of his diet is is still pureed and I rely heavily on baby food portions of meat and vegetables. Since he’s picky about more solid food, I also buy prepackaged portions of chopped carrots  and green beans that are soaking in water and softened for him so he can transition to more texture. I also buy boxes of chicken nuggets without breading and meatballs. Basically, everything is already portioned out with all the nutrition info on the side. So it’s easy to keep track of his allotted 10 net carbs a day.

I started tweaking his diet a couple months when we were trying to get in somewhere to start the ketogenic diet–only to discover most hospitals take months to get you in. For a long time I just reduced his carbs, but didn’t stick to a particular limit. I just avoided pastas and gave minimal fruit. It seemed to help a little, but seizures were still almost daily. As I read more about it, I started giving him half and half occasionally instead of milk. Then, a couple weeks ago, after checking in with a nutritionist, I started stirring olive oil into his food, and switched from milk to heavy whipping cream mixed with water. I try to spread his carbs and fat evenly through the day. There is no specific amount of fat required–just “liberal use.” To figure out the 10 grams of carbs, I just look at the nutrition info and subtract the dietary fiber from the carb count because those carbs don’t count. I bought book that goes in my purse listing nutritional content of food for the process of getting him to eat more table food. Then I went to Walgreens and purchased Ketostix. Those are used to periodically check his urine for ketones. If the diet is being done correctly the color of the strip should reflect moderate to large ketones. The first time he had small, so I worked on spacing out his fat intake and his last two checks revealed large ketones in his urine. Ketones are what is left behind when the body starts burning fat for energy instead of the glucose from the carbs most of us run on.

Checking the urine of a kid in diapers is super fun. A book had recommended using cotton balls to soak up urine and squeeze it onto the strip. The writers apparently haven’t had much experience with today’s super absorbent diapers because I have to tear through the lining and stick the strip into…whatever that stuff is that spills out of a torn up diaper. Things that would have made me vomit before a kid.

One of the first changes we saw a few weeks ago was that his random seizures during the day were significantly reduced. But waking up was still a big trigger for him. I knew I would see one almost every morning and after nap. But even those have reduced, and I have seen none for three days. He even woke up twice this afternoon–mid-nap and at the end of the nap. I watched closely. No seizure!

Plus, when he was weighed recently he came in at 30 pounds. Last time any med changes were made, he was 27 pounds. So we are seeing this improvement, even though his meds aren’t calculated at his current weight. It would be so amazing to get him off one, if not both, meds. Fingers crossed.

Here are some photos from Disability Day at the Georgia capitol the other day. Several parents went to represent HB 885, which we hope will pass and move this state toward allowing people to access the medicine they need.

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Acceptance or Denial?

I often question how it is that I’m handling things so well these days. I was a walking ball of anxiety for the first few months after Connor was born, and now I just feel so…normal — an adapted sort of normal — but normal nonetheless. At one point I even started questioning whether I was in denial, rather than just being adjusted. It probably helps that the second year of Connor’s life has been much smoother than the first. But I’ve seen a lot of online dialogue regarding birth and diagnosis stories. Some people have developed PTSD from the traumatic circumstances. Years later the thought of those circumstances still has a traumatizing effect on them. I don’t really think about it that much. Connor’s seizures started hours after birth, leading to a five-week stay in the NICU, so it was definitely traumatizing, but why is it that I’m able to just block all that out and not think about it, while others find themselves seeking therapy or suffering at the very thought. That’s actually what led to me wondering if I was in denial. I even Googled it (haha), but I think I’m too functional to qualify (of course, I found about eight other unrelated disorders I might have).

Chris recently spent some time going through some stuff in the office. When I went to bed that night, he had placed the buttons that Northside Hospital gives out to families when a baby is born on the table next to the bed.

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And suddenly, I was crying. I used to be a big cryer, but I hardly ever cry anymore. So I was surprised by my reaction to the buttons. They made me sad that we didn’t get to have a normal start and it brought back the feelings of fear. I remembered asking for something to help me sleep –which they wouldn’t give me — and lying awake bitter that I could hear other people’s babies on the maternity ward crying in their parents’ rooms. I remembered how cruel I thought it was that I had to stay on the maternity ward at all. I remembered how I didn’t quite know what to do with the buttons at the time. I don’t even remember if I wore one. But I knew how excited I would have been about them had everything gone normally. I love cheesy stuff like that.

Acceptance or denial? I guess I’m somewhere in between.

The hearing on HB 885 and a diet decision

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I guess blogging really can be therapeutic. After I posted Friday about our trip to Birmingham regarding the ketogenic diet, I just didn’t feel right. I had a tightness in my chest that I hadn’t experienced in a long time. Anxiety? I couldn’t stop obsessing over our appointment with the neurologist and how she just wasn’t on the same page at all. I guess it’s true what people say about going with your gut. I looked back over my correspondence with CHOA. I had never cancelled our March appointment just in case. Connor is already responding so well to the tweaks in his diet that aren’t even the full-blown MAD or ketogenic diet. I went upstairs to find Chris and said, “you know…we still have the CHOA appointment, and the nutritionist said she could help me start MAD at home…” And within seconds it was confirmed that neither of us were comfortable moving forward in Alabama with that neurologist. So I emailed the nutritionist that we would be sticking with CHOA and I am waiting to here from her.

Yesterday I attended the first committee hearing on HB 885. I don’t know what I expected, but it wasn’t what I got. It started late as the morning session had gone long. Some members came in late to the hearing as they were at other meetings that overlapped. Paige Figi — Charlotte’s mom featured in the Sanjay Gupta special — flew in with Joel Stanley from Realm of Caring to testify about what they are doing in Colorado and the success they are having. They are in the process of getting FDA-approval and they are doing studies, but it is a time consuming process and children with severe seizure disorders don’t have time to wait. They explained that they are a heavily regulated industry. They also said they now have a waiting list of over 2,000 people nationally and internationally, hoping they will be allowed access.

Dr. Mike Green then testified and shared that the Medical Association of Georgia supports the bill. Dr. Smith testified about his experiences having a child with a seizure disorder (Doose syndrome) and the awful side effects that can come with seizure medications. He and Dr. Green also shared about the Epidiolex drug trials that are going on. Epidiolex is manufactured by GWPharma using CBD as the active ingredient. Dr. Smith tried to get his child into one of the studies, but they were full. Dr. Flamini also testified. He is the neurologist to many of the kids whose parents are fighting for this. He is actually the mysterious neurologist I frequently refer to in this blog. He is very supportive of CBD studies and is applying for Investigational New Drug status (IND) so that he can work with Epidiolex in his office. It is a very lengthy, difficult process to work with a schedule 1 substance, but even if he is approved he is very limited in how many people can use it. Though he was testifying in support of HB885, he is actually excluded by the bill because he has a private practice. It would only be available via research hospitals.

I also want to point out that Epidiolex is in trial phase and not yet FDA approved. It has been granted orphan status, which speeds things up, but we’re still talking years. May I remind you that vigabatrin was not FDA -approved in the U.S. until 30 years after the first trials. Ahem.

Several parents shared their heartbreaking stories. Janea Cox shared about Haleigh, pleading with the committee not to let her daughter die. Aaron Klepinger shared about the amazing success their son Hunter is having in Colorado and how badly the family wants to come home. One dose stopped him from clenching his fists so tightly that his hands would bleed. Jonathan Jiles shared about his son Kason’s battle with Ohtahara syndrome. Sgt. Chris Clark, a 26-year veteran of the police department shared about his family and how his wife and child are in Colorado for treatment while he remains behind to provide income and insurance. He also shared that his son had a brain surgery that caused a stroke. I wished they could have had more time, but were all rushed because of time constraints and the impending bad weather.

Then came the oppositional speakers with lengthy presentations. Sue Rusche from National Families in Action opened with a YouTube video she took of an advertisement for Indispensary in Colorado. Dispensaries are where you can buy marijuana products. It took me a while to ascertain her point, but it seemed to be, hey, look at all these recreational marijuana products. These are available in the same place as where some of these Colorado parents are obtaining their child’s medication. It was a long, slow video with lots of silent footage of recreational products. Personally, I was shocked it was allowed to play out in full considering the rush for time and that testifying parents had to talk quickly. It was also quickly pointed out by Rep. Kaiser that it was irrelevant. Georgia is not Colorado. This is not what we are doing here. That is simply a place in Colorado where medicine may be picked up, but we wouldn’t have that here. We are interested in a non-psychoactive oil that can’t get you high only ONLY; recreational is not on the table. We want an oil form, not buds. Rusche was clearly not supportive of products such as Charlotte’s Web which has saved many lives in Colorado. She pushed the Epidiolex trials repeatedly and insisted it was not hard to get, that any doctor can apply for IND status and have it in 30 days. This was after Dr. Flamini already testified that it was a difficult process. The doctors behind her were also shaking their head as she spoke. But no matter what was asked, she insisted that Epidiolex, courtesy of GW pharmaceuticals was the only suitable option. She was so insistent that one of the reps eventually questioned whether her organization received money from GW. A representative then asked her if Epidiolex is so easy to get, why aren’t these parents doing that? “I wish they would!” was her response. And at this time, I ask you to recall above where I mentioned that one of the testifying doctors tried to get it for his kid and couldn’t. At that point, Rep. Peake asked her, ‘Would you tell Aaron Klepinger to stop giving Hunter Charlotte’s Web and get in line for Epidiolex?” She said no.

Some doctors from CHOA spoke. While they have reservations, they are very interested in possibilities of CBD oil. Then Rick Allen of the Georgia Drug and Narcotics Agency spoke of the challenges of getting it here due to it’s classification as a schedule 1 substance — no doubt a major hurdle. He said that where we stand, something like Charlotte’s Web cannot be brought into the state legally. University of Mississippi is the only place permitted by law to supply as part of research projects.

Then came, what was for me, some of the most disturbing testimony. Karen Tinker gave lengthy testimony as a mother of a son with epilepsy. I was confused at first. Why was she at the end rather than with the other parents? Why have I never seen her or heard her name before? As it turned out, she wasn’t testifying for the bill. She was testifying against it. She started out with a similar story. Many meds failed her son and he recently received the VNS implant, which she acknowledged comes with it’s own dangers, and wasn’t guaranteed to solve the problem. She talked about her methods of evaluating treatment options for her son, and said that she had chosen not to use Onfi because of potential side effects (a med that I felt we had to try for Connor). But she stated that CBD oil did not have the research to back it. That we needed wait to several years to see what studies would say. She likened the passing of the bill to opening Pandora’s Box and said she worried that all the positive headlines about marijuana would lead her teenage son to try recreational pot. After the fact, I saw her Linked In profile. It turns out she owns a company that provides mobile drug testing of employees to companies. She doesn’t seem to differentiate between medicinal and recreational.

It was heartbreaking that a parent of a child with seizures would do this to other parents. Especially after Janea Cox had cried and shared that Haleigh has stopped breathing 56 times in the last month.

I respect the right of every parent to choose the course of action for their child. Not every parent is comfortable with medical cannabis at this point and I respect some would not opt to use it. Just as Tinker chose not to use Onfi, we did choose to use it. I do not respect someone that tells others they shouldn’t do something that could save their child’s life. I am so lucky that Connor’s situation is not as dire as the situation of the testifying parents. It’s cruel to try and stand in the way of something that could save their lives.

After that, a couple doctors testified that had been recruited by Rusche. I’ll be honest. I didn’t hear much of what they had to say because I was still in shock over Tinker’s testimony. At that point the hearing had hit three hours and it was an hour and a half past when it was supposed to end. The remainder of speakers were asked to return to the next hearing.

I’m not sharing all my thoughts at this time on the hearing in the blog. If interested, I can talk more one-on-one. I will provide more detail at a later date. All I can say is that yesterday was an eye-opening experience.

Out of the closet…….

you don't know Jack

It has been over a year and a half since I have begun blogging about my adventures with Jackson.
Through it all I have received nothing but positive feedback and praise for this little boy whose life touches many.
My readers here and over at Jack’s Facebook page have come to love this little boy.
Jackson’s smile gives joy to people.  His love of fuzzballs, slinkys, and all things spinning is endearing.
His struggles with seizures and TSC is inspiring.
Jackson is, as always, living in the moment.

So now it is time to come out of the closet.
Jackson is part of a movement that many support, some fear, and others are on the fence about.

Jackson is a medical marijuana patient in the state of California.
He is so with the blessings/knowledge of his local pediatrician and his TSC clinic.
While some may have images of a an…

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An unsettling appointment and a great press conference

Quick plug: Lisa Cummings, another TSC mom I know through our online community often writes and shares poems about her life with her daughter, TSC and special needs. She just published her first collection of poetry and it is available through Amazon. Please check it out here.

The journey toward the ketogenic diet continues…and might end with me jamming a screwdriver in my ear. We have been pursuing diet therapy since before Thanksgiving. The wait lists at keto clinics are ridiculous. The one that could get us in the earliest was in Alabama, so we had our new patient appointment Tuesday. Two hours there and back again. Connor’s neurologist had sent his 157-page chart over well in advance. I knew that this appointment would be, for the most part, a formality as the neuro that will oversee him on keto has never treated him. As expected, it was a lot of repeating his history. There was only one thing I wanted after 2.5 months waiting–the date Connor will be admitted so we can get this damn diet started. We’ve had this hanging over us for months, afraid to plan trips and make plans. I thought that would finally come to an end yesterday, but it didn’t. She agreed to take him on, but we still have to wait to hear when he gets admitted. She hoped it would be February, but couldn’t say for sure. So until they call, I have to worry that they will want him during the March dates we’re in DC or Boston OR that they will want him in right before those dates and I will have two days to prepare for traveling on this insanely strict diet.

To be honest, the appointment was a little strange. First, I was bummed to find out that our stay will be longer than the typical keto stay because she wants to do an EEG first. Granted it has been a while since he had one, but I don’t want to spend a week in the stupid hospital. But if that’s what it takes to get things going, I wasn’t going to argue. The thing is, we just got the feel that she wasn’t that thrilled with the ketogenic diet. She wanted to know why we weren’t pursuing surgery. I consider surgery a last resort for the most part. It was an easy choice the first time because the seizures were so frequent and causing major developmental delays. But he’s much better now, and has already responded to some tweaks I’ve made in his diet on my own leading me to believe the diet will be beneficial. Also his EEGs, while indicating activity from the left occipital lobe, have also shown activity from other areas.

Don’t get me wrong…it’s not that we wouldn’t consider surgery again if a newer EEG could determine one particular tuber as the only or primary culprit (and my guess is that it would be the one in the left occipital) but since our referral was specifically for the diet, I really wasn’t expecting such enthusiasm for surgery. The doctor even made a point of expressing concern about potential side effects of the diet, and I was thinking…what is going on here? At any rate, surgery is not on the table for us right now. I see no need for that if keto can do the trick.

I know neurologists have very differing opinions on the best course of action…I just finished reading a book (I recommend Fighting Back With Fat by Whitmer and Riether) that talked about how the diet was often used decades ago, but fell out of favor with the emergence of so many pharmaceutical options coming on the market. It made a comeback in the 90s when the son of a filmmaker — Jim Abrahams — was diagnosed with epilepsy and he wasn’t responding to medications. The ketogenic diet was his savior. His father later made a film called First Do No Harm with Meryl Streep and started the Charlie Foundation. Since then keto clinics have popped up all over the country, and in many countries around the world. More and more neurologists are coming on board with diet therapy because it has proven results, but there are still some that shy away, especially in other countries. The book had me so gung ho on the diet, that this neuro’s lackluster response threw me for a loop. The nurse that came in prior was very enthusiastic about it. But forward we shall move.

Wednesday was a better day. I finally met many of the other parents fighting for HB 885/ Haleigh’s Hope so that we can have access to medical cannabis in Georgia when we met for a press conference at the capitol building. I’ve been to DC to meet with legislators, but this was actually my first trip to the gold dome, even though I’ve lived in the Atlanta area since 1992. I was not prepared for how packed it would be. As a former teacher, I feel I can express what so many of you are thinking in many public places (i.e. Fernbank, the aquarium, the zoo, etc). Field trips are evil. A necessary evil. But evil nonetheless. I remember being at the aquarium in the role of teacher, with multiple schools crowding the walkways, and looking at all the people who paid full-price admission and thinking, “You poor b*******.” As I crammed onto crowded capitol elevators, I thought, the kids need to see these places, but perhaps we should pass a bill banning scavenger hunts. But I digress.

Dressed for politicking at the capitol.
Dressed for politicking at the capitol.

It was freezing outside, very much in contrast with the 100 degrees inside the building. The room numbers are all out of order, too, thus ensuring a healthy workout. I started out meeting my representative Don Parsons, who has signed the bill. We had a nice conversation and he asked me many questions about Connor. Then I had a scheduled meeting with my senator Judson Hill. That didn’t happen as he had not come in that morning. I was disappointed to say the least. I am not sure where he stands on the bill as I have had no luck getting a response from him. I continue to follow up.

Check out that landmark in background! Pshh. Not the gold-domed capitol...Johnny Rockets!
Check out that landmark in background! Pshh. Not the gold-domed capitol…Johnny Rockets!

We had a press conference at 11:15 with WSB’s Lori Geary, who has been a champion of the cause, presenting it in an appropriate way and making every effort to make key issues clear. For example, we are still trying to make sure people understand that kids aren’t smoking joints. It is an oil form, high in CBD, low in THC — though I do want to be clear that THC has medicinal benefits as well. But since it is the psychoactive component, people are more afraid of it than the CBD. At any rate, the kids aren’t getting stoned.

WSB's Lori Geary speaking with affected families.
WSB’s Lori Geary speaking with affected families.

Several parents spoke about their kids: Shannon Cloud, whose daughter has Dravet syndrome; Janea Cox whose daughter has LGS and for whom the bill is named (Haleigh’s Hope); Chris Clark, whose wife and child have relocated for treatment; Jonathan Jiles, whose son was born with Ohtahara syndrome; and Aaron Klepinger, who flew in from Colorado to speak about his son’s successful treatment in Colorado and how they want to return to their Georgia home. FYI: Haleigh is in PICU and really struggling. They are looking at having to relocate a medically fragile child to Colorado when she becomes stable enough for a life flight. Fundraising efforts have started here.

Aaron Klepinger clutching a photo of his son Hunter.
Aaron Klepinger clutching a photo of his son Hunter.
Shannon Cloud addressing the need for medical cannabis.
Shannon Cloud addressing the need for medical cannabis.

I’ll keep you updated as it progresses through the process. Here is the news clip (you can see me and Connor in the background several times).

I’ll close with a few more photos from the capitol:

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Wendi Scheck with son Hudson and Rep. Allen Peake (and service dog Denali).
Wendi Scheck with son Hudson and Rep. Allen Peake (and service dog Denali).
It's hard to tell a delighted toddler that you aren't supposed to pet service dogs :)
It’s hard to tell a delighted toddler that you aren’t supposed to pet service dogs 🙂

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