I said i would try to write every day but the truth is i cannot always get to a computer to write every day. actually part of it is where our computer is located and the thought of sitting in the office looking at the litter boxes, which are inevitably dirty makes me want to pull out my hair and it gives me anxiety so i choose not to go in there.
anyways.
Annika was started on keppra, then we had to keep going up and up on the dosage, she is now at her max which is 360mg twice daily. she has had a cat scan, an mri, multiple lab tests including a dna test for some sodium channel mutation. also 2 eegs. the first eeg was normal, the second was not. i was told that a lot of epilepsy will show up in only one part of the brain when a seizure is happening ( on the eeg) but annika is firing everywhere. all her little brain bits have the electric currents that make up her seizures. which makes them complicated. also she is always ALWAYS concious and aware of what is happening. she doesnt have the after effects of a seizure, she just gets up and goes back to what she is doing. some times they are only partial seizures, sometimes full seizures. i dont think they can be classified as "grand mal" (big bad) but they arent "petite mal" (little bad) either. she started zonegran and maxed out on that as well. turns out she is actually a little high so they had to decrease her. this whole time 1+ year she has been having seizures. there hasnt been a time where her seizures ever stopped completely.
which brings me to now. they started her on DILANTIN last week. i am not happy. i was told they just want her seizures to stop before they go further. but really. I dont like this drug, i dont like what it could do to my daughter, i dont like what it is doing to my head. i keep thinking that in the middle of the night she is going to have a static epilepticus episode and die while i am sleeping. argh. so i am not sleeping well. also i was pms'ing and totally unreasonable last week. i am a mess. my daughter however seems sort of unfazed aside friom the being tired/being restless, the grumps (which could be a terrible 2 thing), and her waning appetite.
well more later.
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I've been worrying one day Naomi would have a Grand Mal and I'd' be out grocery shopping or something, but the neurologist told us at our last visit to put that worry to rest. The grand mal is another kind of wiring,(not her exact words but something like that) and Naomi's been having seizures since Aug 2007 and they haven't progressed so a Grand Mal isn't likely. Naomi has generalized seizures, Myoclonic Astatic seizures. We also started on Keppra (and still use it 500 mg/ 2x day) we've tried Topamax and Depakote, both no good. Our neuro always kept us on Keppra, she said they just don't want to loose any ground they may have gained, but she NEVER made us keep her on 2 drugs at once. While we reduced Depakote we increased Topamax over about a 2 week period. She didn't just keep adding drugs to the mix. If you don't fee comfortable being on Zonegram and Keppra plus adding Dilantin, and if none have helped I'd tell the neuro to pick one, but one HAS to go. Or tell him to show you some proof of what possible good this could do. Our neuro told us they'd seen some success with Zonegram in Japan, but didn't act like she was ready to try it. She is VERY good about telling us what drugs she wants to try and why she DOESN'T want to try other. I may be wrong but I thought Dilantin was one she said she had seen kids get worse on. We're on the Ketogenic Diet and I think Dilantin may have been next on the list of things to try, and now after 4 months on the diet, even though we are not seizure free, I can not imagine having to try another drug! When you start weaning them and they come out of their fog it makes you so sad for the time they've missed.
ReplyDeleteDo you have a diagnoses of what kinds of seizures she has, other than they're apparently generalized too (aren't we lucky! The hardest to treat!)