Since my last post, John went 10 days where we only saw 2 small seizures! That was really amazing. The seizures did start slowly coming back after that, though, and we haven't seen any more seizure-free days since. I still think the seizures are gradually weakening. I don't know what these seizures are officially called anymore (based on the EEG), but I think most people would now consider these to be absence seizures. It's more like he is zoning out for a few seconds. You can tell he's having a seizure if you look at his eyes, but his head rarely moves anymore, and he recovers quickly from all of them.
We have continued to lower John's Lamictal. I think we do see an increase in seizures and behavior problems with each reduction, but it seems to level out after about 10 days. Unless we see some change, I think we'll continue to try to reduce the Lamictal.
We have continued to see the herbalist every week. She is still changing his formula around. She is trying to address his stomach issues as well as the seizures themselves. John has accepted the herbs and takes them without problem now. This stuff has a really strong (disgusting!) flavor, so I'm amazed that he takes it without complaining.
We have also been to the Naturopath a couple of times now. He had John take a food sensitivities test. That test came back showing that John has a medium to strong reaction to dairy, wheat, and gluten, among other things. He recommended that we remove these things from John's diet for a couple of months to see if it helps. As much as we hate to continue to limit John's diet, we want to do everything we can to help so he is again on a pretty restrictive diet (though nothing like keto!). Thankfully we have some excellent stores around here that have tons of gluten and dairy free products, so he's eating well.
The Naturopath also recommended that we get his thyroid and ferritin levels checked, so we did that at the same time as his normal blood test. The thyroid tests haven't all been returned yet, but the ones we have showed no problems. The ferritin was super low (12, I believe). This means that something isn't right. He's either not getting enough iron in his diet, has chronic GI bleeding, or there is something else going on causing the low level. Low ferritin (or iron) levels have a direct correlation to learning disorders, ADHD, and hyperactivity. Hmmm, sounds like John! So, John is on an iron supplement now as well. We'll get that level rechecked in a couple of weeks. Glad we found it, and I question why he was never checked for this in the past.
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