Update

      After calling the neurologist and explaining that Abigail's seizures aren't getting any better he said that maybe Trileptal isn't the medicine that's going to work for her after all. He mentioned a new medicine-Zonagran-it's similar to Topamax in the way it works so chances are it would do something for her, but the risk of metabolic acidosis, or renal tube acidosis, or RTA is also associated with this medicine..it's apparently not as high as Topamax, but it's there, and that worried me a little bit. It's pretty evident that the Topamax was an effective drug since coming off of that is the start of her seizure activity increase..and of course the thought of putting her back on Topamax has crossed my mind, but the RTA she got is a serious side effect! It was effecting so much of her growth that it just doesn't seem worth it! Since coming off of the Topamax she has not had anymore of those nasty blue spells, her nystagmus, or "jumpy eyes" are gone, and most importantly she has gained a ton of weight! She's got big baby thunder thighs now and a big round belly that I just love to see! But on the Topamax she wasn't having seizures and she was progressing really well - which as I mentioned yesterday has been lost since the seizure increase - she's lost a lot of what she used to be able to do..although, I truly believe that is solely due to the amount of seizures she's having each day - I really feel like as soon as we get them under control again she will be able to bounce right back (I hope anyway).
     I don't know much more than that yet, just that the neurologist is giving up on the Trileptal and wanting to try something else. We have only spoken to each other through voicemail right now but hopefully I can catch him/he can catch me tomorrow and we can get things squared away. I did mention to him that medicine I learned about yesterday-Potiga- to see what he knows/thinks about it. I think if she is going to bounce back from this then the sooner we get these seizures under control the better chance she has! It feels like an eternity right now, but I know that in the future when I look back on this month I'll think "she ONLY had them for about a month, then we got things squared away" but right now it has been one long month.

Thanks again guys! Any advice you may have or people you may know that used medicine that worked for them please let me know! I hate that we have had such good luck in finding cocktails that work for us, but then she gets a side effect that makes us take them away..It's just another AbiNormality, I guess, getting the side effects that are there, but not super common.  It just means there is something better out there for her...and we will find it!

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