We are Cleveland bound, so I thought now would be a good time to update on yesterday's appointments. We were at the hospital ALL DAY LONG! By the end of it, we were all extremely cranky and no fun to be around.
Epilepsy Appt:
Needs to do another 2-3 night stay in the hospital for a video EEG. His last one (was in Sept 2009 & was only 30 mins) didn't show seizure activity, just a lot of "spikes"/abnormal brain activity. His activity occured mostly in the right side of the brain and all over (multifocal). His doc is thinking he may have a condition were his seizures occur mainly at night (or when he is sleeping). We know his brain activity is much different when he is sleeping from his hospital stay in Dec '08. I cannot remember what they called it then, it'd have to go sift through papers. So, the decision was to stay on his current seizure treatment plan. (Topamax twice daily, Klonopin PRN, and Diastat PRN)
Neuro Appt:
1) We have no more information on Logen's "disease" than we did on our last trip- besides knowing what it's not. His mitochondria do not function normally, the area's we know for sure aren't normal are "Complex 1 & Complex 3". On every genetic test we do with the Mitochondria (ex. mtDNA), everything comes back normal. We know he has "type 2 muscle atrophy". We do not know what has caused any of this (hince negative mito genetic tests). Any positive test could possibly give us things like a prognosis (what every parent wants). Advances in Mito Medicine are incessantly being made, so we are very hopeful.
2) Many medicinal changes:
A) Moving to the "liposomal Ubiquinol form" of his CoQ10 (in the Mito cocktail). It's suppose to absorb into the body better and be a more "active form".
B) Start a Pyridoxal Phosphate. It's a derivative of B6. However, this has proven to help with seizures. And, it's "natural"- so why not try it?
C) Try Papaya Enzymes for drooling. Since Logen's swallowing function seems to be declining, we want to limit the possibility of his aspirating his own secretions. Dr B wants us to try a natural supplement before we look into Rx meds.
D) Start probiotics (Dr B recommends "Gut Buddies" from Epic4Health, they are the company that makes the FDA approved Mito Supplements) & ground flax seed.
3) Switch Logen to dairy free supplements. Oh, this will be the most difficult change. Parker is already on a dairy free diet (for the most part), so knowing what to cook, etc isn't going to be to bad. Mr Logen is a dairy freak! He is a lover of yogurt, pudding, ice cream, etc. All of which can be bought dairy free (thankfully!). It's just going to be training him he can't have those things, or they need to be ingested in very small amounts.
Extra Stuff : We did a hip x-ray, labs to check for B-12 deficiency, serum ferritin, CBC with diff, etc, had another EKG to check for conduction defects (worried about his blue toes/hands)
