We went to the new pediatric neurologist in Springfield yesterday. It was a good visit. He's a young guy - I think maybe about my age. He has worked with Mito kids before (with another doc in Boston), but was quick to state that he is no expert on mito at all (which I appreciate). He asked a lot of questions about Eve's past and present. He thinks that the 2 episodes that I described were indeed seizures (these happened when she was 2) and that a normal EEG doesn't mean they weren't. He thinks it is very possible that she will end up having seizures one day (again).
He wants to put her on a mito cocktail (a mix of medicines and vitamins that sometimes help functioning of mito patients). I am hesitant because when she was on CoQ10, carnatine and riboflaven we didn't notice any improvement and the CoQ10 is very expensive. He said he has had luck getting it approved by insurance. Jim is very interested in getting her back on meds to see if they really were working, so we will definitely try it.
The neuro also wants Eve to see 2 other specialists. First, a mito doctor in Boston (just to see if she wants to tweak the cocktail formula), but he understands that a 3 hour trip is not something we want to do all the time unless we have to. I think he is looking at this as a one time deal. Second, he wants her to see a doctor in Northampton. I can't remember the type of specialist, but I think it was a physiologist or something. Basically, the kind of doctor that would inject her with botox if her muscles got to be too rigid and stiff. He also said that there are oral medications that would relax the muscles, but they sometimes have a sedative effect on the child. Right now we are holding off on the meds (her stiff tense muscles are not interfering with diaper changes or dressing), but will establish a relationship with this doctor for the future. Apparently this doc can help with braces and equipment (in terms of letter writing, etc).
The neuro wants to see her again in 6 months, but sooner if she has a seizure, a major regression, or has a body jerk or startles when there was no noise to startle her.
I really wish that Jim could have come with me because I feel like I am forgetting so much. Also, there are questions that he has and things that he notices that I don't remember to address by myself. Next time he'll come.
Last night was open house at school for Eve. We met some of her classmates. Marquesa is enamoured with Eve and I think it is mutual. Also, we saw Krish and his mom. She told us that from down the hall he pointed at Eve and said, "That's my best friend, Eve." I am totally tearing up as I write this. This is why she's in school. This is what I can't give her. I am so happy that she is doing so well in school. We love her teacher. She asked for us to bring Eve's wheelchair tray in to school. She explained that when they are in circle, they use a button to speaks for Eve. They were presenting it when it was time to use it and Fern (the teacher) didn't want Eve to just press it because it was being presented. She wanted Eve to understand when to press it. So they use the tray and put the button in reach and she presses it when appropriate. I'm just so glad that Eve is in this classroom.
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