Tag Archives: CHOA

Politics and Pinot

Oh, I have a blog? I should probably update it. I’ve been so busy. I’m starting to get materials together for the D.C. trip with the TS Alliance in March, been filling out paperwork for Connor’s services and looking into starting hippotherapy (horses-yay!), and trying to read the books I bought on the ketogenic diet. I’m a tad bit nervous and anxious to get started. I’ve already tweaked his diet a bit to be low carb and higher in fat, which I think is helping his seizures, but no where near what the diet requires. It’s way too extreme to do without medical oversight. I can’t totally relax though because our appointment in Birmingham is Feb. 4, but that is just to meet with the neurologist. Though I was told he’d be admitted soon after, Connor doesn’t actually get scheduled for the clinic until that appointment. I’m scared they’ll pull some unexpected wait to start out of their pocket. I’d kept our appointment at CHOA just in case they could get us in earlier and save us the travel or in case something went awry with Birmingham. But come to find out, even though Connor’s neurologist has spoken to several people, and I have spoken to several people regarding starting keto, they still have him down for starting modified Atkins diet, even though the plan of action was changed before Christmas.  I wish someone could explain to me how I have several conversations with someone about the fact that I’m bring Connor in for one thing and at no point does anyone say, “oh oops. He’s scheduled for something else!” Whatever. It’s the same old thing with CHOA every time, no matter what it’s for.

I’ve also been wrapped up in the sudden and surprising momentum of the medical cannabis movement in Georgia. The parents I’ve been talking to did an amazing job of getting the attention of the media and several legislators. Things are rolling and there’s more to come! I’ve been emailing my state legislators and the governor and we’re really seeing a lot of growing support. Access to medical cannabis has the potential to be life changing for so many suffering people.

Connor’s stubborness is reaching epic proportions. He will be two in March and he still won’t give up the bottle. A couple weeks ago I thought we were rounding a momentous curve. He has a sippy cup with a mouthpiece that can be interchanged with the bottle nipple. We’ve been more focused on cup drinking lately so it had been a while since I tried putting the actual sippy cup mouthpiece on the sippy cup instead of the nipple. I handed it to him and there was 15 seconds of drinking. My hands were on my mouth, trying not to gasp, practically jumping up and down. Then he stopped, pulled it out of his mouth, gave it a careful visual inspection, realized he’d been had and threw it down. The next 30 minutes were a standoff in which he would have no part of it. He had to accept a few sips from his training cup and his straw cup (which he’ll only take when urged and helped) before I relented and gave him the nipple. I like to create the illusion that I’m winning.

In spite of all this, we did have a great night out this weekend with two of our couple friends. Connor spent the night with my parents and we went to a wine tasting, dinner, had some drinks and hung out at a friend’s place. Part of the excitement was that we would be able to sleep in on Sunday, but I was having so much fun that we didn’t head home until four. I don’t think Chris was too pleased — he really treasures his sleep — but he humored me.

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This morning I met up with Sara and her two boys for a trip to the Fernbank Natural History Museum. I wasn’t really sure Connor would be into it, but he had a blast. They have a pretty sweet play area.

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I’ll close with this open letter written by Aaron Klepinger. I posted previously about his son Hunter.

My son Hunter has had intractable epilepsy for over 8 years and the seizures have severely impacted his development. He was able to do more before his seizures, such as stand unassisted against the couch. After starting to seize, he has regressed to a 1 month old development level. He depends on us for everything (transferring, feeding, diapering, etc.). We have failed 12 pharmaceuticals, often with devastating side effects such as hours of screaming fits, increased seizures, non-stop sleeping, no sleep, etc. We have tried vitamin supplements, chiropractic, intense neuro-developmental therapies, ketogenic diet for 2 years with constant dietary changes, and VNS implanted (https://www.epilepsy.com/epilepsy/vns). 

He also has been diagnosed with a movement disorder. He flails his arms and legs and moves his head in all directions usually for hours at a time, sometimes in rapid succession. He moves and kicks so much in bed, we have had to put his mattress on the floor because he has fallen off the mattress. We are considering having to make a custom bed for him to keep him safe. His wheelchair has had to be customized heavily to stop him from hurting himself. We modified our Georgia home for his protection also. His shower there is extra wide so he doesn’t punch and kick the walls as he did when he was bathed in the bath. We also had to buy a ~$2000 bath chair out of pocket to strap him down while we bathe him. The typical chair covered by insurance would not provide enough support.

Since starting medical cannabis treatment, we are seeing way less seizures, more moments of relaxation, more happiness, greater eye contact, and greater awareness of his surroundings. Throughout his life, he has had a lot of GI issues, including constipation. We have noticed better motility with his bowels as we have increased the medical cannabis. He also used to clench his fists so tightly he would cut his hands with his fingernails. He did this fist clenching almost 24/7/365. He no longer does this.

In reviewing the past ~3 months of online seizure data, his seizures have gone from 17% of days without seizures (likely less than 17% if I dig further into paper records sitting on a moving truck now) to 47% of days without seizures after starting treatment (47% is a confirmed, hard number). Seizures that were 5, 10, or 20+ minutes before are now under 2 minutes. His more mild seizures we can’t even tell if they are a seizure now they are so quick and unpronounced. He holds his arms out as if he thinks he’s going to seize and then the seizure never comes. And this is all on a low dose, having just started medicine. Seizure medicines usually take months to tweak to a proper dose and this is the same way.

Haleigh Cox and 150,000 Georgians that have epilepsy should have the medical option of this gift from God. Thank you for helping us come home and share this medical treatment with so many other people suffering. 

For your colleagues in the House and Senate, Georgia has a great medical tradition, including Emory, the CDC, and many health oriented companies and non-profits such as the American Cancer Society. We should step to the forefront on this health issue too and lead the way for states like Alabama and Tennessee that are considering legislation. Lets look at the science and put patients first. Medical cannabis is improving my son’s quality of life dramatically. It is our moral obligation to end the suffering of sick people. Lets pass some legislation this session before someone dies from unsafe pharmaceuticals. Compare the 40+ side effects (including death) of the most prescribed seizure medicine (Depakote) to the side effects of cannabis (none, virtually). Add to that the benefits that patients are seeing. It is clear the science supports medical use of this plant. Lets move forward with a bill in 2013 so Haleigh can live and Hunter can come home and stop being a prisoner in the state of Colorado.

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Medical maladies and eating strategies for the picky eater that will eat anything — sort of.

I had a physical last week. When I got home, I announced that I only had six months to live. My parents laughed and rolled their eyes, a natural reaction from anyone that has known me for 33 years (they were there to watch Connor since Chris was working upstairs). Chris told me to stop it. He never enjoys my macabre sense of humor. I’m not allowed to play games like “What If?” or “Would You Rather?” He doesn’t like hypotheticals, where as I thrive on knowing things like, If I died, would you keep the cats or give them to my mom?  Or, would you rather be married to a donkey or smell like a port-a-potty no matter how many showers you take.

My doctor confirmed that she thinks the headaches I’ve been having are migraines — mild as far as migraines go — but still migraines.

I also took Connor to a dermatologist for a wart he’s had on his foot for some time now. One $50 co-pay and $4 for parking later, off I go to Walgreens for standard over-the-counter Compound W. Sigh. I did like the dermatologist, though. He was an old guy that put out the vibe of an old-timey pharmacist. AND he was familiar with TSC! Even though we weren’t there for anything TSC related, he saw his history and asked questions about how Connor was affected, and he was familiar with various organ involvement. It sounded like he had even been the one to diagnose people based on facial angiofibromas, who were otherwise unaware of their condition. It’s always nice to come across a medical professional that actually knows what TSC is, and that he knew about the effects beyond the dermatological made me quite happy.

In other medical news, CHOA is once again trying to give me what I now know is a migraine. We finally got the call to schedule Connor’s first visit to the keto clinic so we can consult about the modified Atkins diet for seizure control. Want to guess when the appointment is? March 18. March. 18. Lots of four letter words when I hung up. I’m still not really clear on how this is going to go. She told me the nutritionist would call me. Possibly to start the diet before that? I couldn’t get a real clear answer, though I expressed my dismay at waiting three months. She also couldn’t tell me how soon the nutritionist would call. So I think we start the diet via phone consult, which is better than waiting three months, but I sure would prefer meeting with the expert before making such a drastic change to Connor’s diet. But like I said, I’m not even sure if that’s the plan yet.

I must also accept the blame for making Connor sick this week. Connor came down with his first normal, run-of-of-the-mill illness. We’ve had seizures, brain surgery and weeks in the hospital…but not one bout of ordinary childhood illness. He woke up late Wednesday night coughing and ran a low-grade fever most of Thursday. No fever this morning, but still coughing occasionally. Fantastically, though fevers typically lower the seizure threshold, I saw no seizures during the course of battling his temperature with Tylenol and Motrin. But why my fault he’s sick? I recently blogged about his superior health and just this week, I thought, man, we might just make it to his second birthday with no viruses! My bad, buddy. I know better. I’ve been sleeping on the floor next to his crib the last couple nights because it makes me feel better mentally — my hips hate me though. Chris would have done it, but Connor doesn’t tolerate snoring.

So it has been a lot of lying around and sleeping, along with more PBS than usual. If I see this Mouse King episode of Super Why one more time, I will scream.

Progress in the eating arena:

On the bright side, it appears we are making progress in the eating arena. His speech therapist has been providing tools to work on his sensory issues with his mouth. He does not appear to have any other sensory issues whatsoever, but try getting him to use a sippy cup or eat food with no degree of pureeing has been about as fun as…as…as trying to make an appointment for anything at CHOA. To eat non-pureed food, it had to be cut extraordinarily small and he would eat in very limited quantities. But this week has been far more successful at getting him to drink from this cut-out cup (which allows me to see how much he’s getting, as well as prevent it from hitting his face making him buck away).

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He also ate this whole serving of mac-n-cheese. Just a couple weeks ago, I had to cut the pasta up and mix bites with pureed food so he wouldn’t just store it in his cheeks like a chipmunk. But he demolished the whole thing with no mixing or cutting this week.

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He also did well with this, though he didn’t finish due to stubborness. The bites he did take, he swallowed, while before this one was almost inedible because he just built a fortress of peas and meat in his mouth.

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These are his other fancy tools:

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The blue and orange thingy can hook to his clothes or seat and its purpose is to prevent him from throwing his utensils. Unfortunately, they slide out anyway, so that’s not really helping. The purple and green spoon is bendable to work on getting him to feed himself. Angling it should aid in helping him put the food in his mouth. This is all theoretical as he shows little interest in anything other than being fed or throwing spoons. Or removing food from the spoon with his hand. The purple tool is a textured spoon to desensitize his mouth. He hated it at first, but now it doesn’t phase him. That’s a Nuk brush on the end. He hates that bad boy. It is also to desensitize his mouth. Not just for eating food, but also for rubbing it around in there. The therapist added the rubber grip so he could hold it himself, I suppose not realizing that his complete and utter hatred for it means that if you actually put it in his hand, it will immediately be on the other side of the room.

Now if you’ll excuse me, he just fell asleep and I’m going to check his temperature. He’s made it pretty clear that if I stick that thing in his ear one more time, I get a Nuk brush in my eye, so cross your fingers…

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By the way, my blog is nominated for a couple of awards over at WEGO Health. Thanks to those who have endorsed me already! It’s not too late 🙂 to do it here.