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.
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.
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.