Last week we went for our neurology appointment. You may recall from this post http://www.ourlifewithalex.blogspot.com/2013/03/neurology-update.html that I had a really hard time at her last neurology appointment so I emotionally prepared myself for this appointment. When the subject of her genetic testing came up (she saw the other doctors notes in her computer system) and I mentioned that I had to admit I was a little anxious to have the results back she said - you really shouldn't get your hopes up, chances of getting an answer are slim to none. I have a lot of kids who are just like Alex that have no answers and the sad truth is that they probably never will. Sigh. I was very glad that I had prepared myself. And maybe she says these things because she doesn't want people banking all of their emotional energy in one spot, especially people who are new to this kind of gig - I don't know. I always jokingly say that Alex is the most not normal, normal kid I know. All of her tests come back normal. That's always my own little running joke. So I just said that to her and let it roll right off my back. Of course, somewhere in a tiny spot in the back of my mind that bugs me if I let myself think about it - but I have bigger fish to fry so I try not to. It's not in my hands - never has been so I'm just waiting patiently and continue to pray that sometime in my lifetime I will have answers. We are about a month out from getting the genetic results back - and I KNOW I shouldn't get my hopes up that this will give us an answer - but how can I not? Almost 12 years of not knowing and that part just doesn't get any easier.
Ok, back to the appointment! Alex has been doing relatively well with her seizures. The week before school was out she had a few days that she seized at school - and there were two days that she had two back to back grand mals - but they were quick. Like seconds. So that's been an improvement in itself. At that appointment back in March we had added a third seizure medicine called Zonagran. Alex's blood work this month showed that her blood levels weren't in the therapeutic range so she's upped that dose. I really HATE that she's on any seizure medicine, let alone THREE of them. And she's not on little doses either. She gets 5 ml's of her Keppra and 5ml's of her Valproic Acid at 7:00AM - then she gets another 5 ml's of both of those at 2:30PM then she gets 75 ml's of the Zonagran at 5:00PM and then she gets 7 ml's of the Valproic and another 5 ml's of the Keppra at 10:30PM. To me, that's a lot. And thank goodness I can set more than one alarm on my phone to remind me! These meds can be tough on the body - they process through the liver and kidneys so it's really important to me that I space them out just right so that there's optimal time for her body to process everything. Now on top of that, we are changing her night Zonagran dose to 100 ml's and this week we added 25 ml's of that to her morning dose and next week we will up that again to 50 ml's. And the most annoying thing about the Zonagran is that it is not a liquid like the other two, so we have to break the capsules apart and dissolve it in water before we give it to her through her g-tube. It's annoying. If your hands are the slightest bit wet, which they usually are because I forget to prepare this one first and I've already prepared the other two and the water flush, the capsules start to dissolve in your hands and get all sticky and it makes breaking them apart harder. And if you don't dump the capsules just right half of it ends up on the counter. And if you put the powder from the capsules in first and then add the water the powder starts fizzing so it overflows the medicine cup. Ugh, I'm getting annoyed just writing about it! Anyway, in true Alex format, the night we upped the dose to 100 ml's, guess what happened? She seized. And the next day? Yep, she seized. And the day after that, ding ding ding....she seized. Back to that last post in March - the night we added that medicine she seized five times in a two hour period. Is that just her body adjusting to new meds and new doses? Does anyone else think it's very strange that she seizes when you ADD anti-convulsants? Oh wait - she's the most not normal, normal kid....that's right! :)
The Zonagran metabolizes through the kidneys - and the neurologist reminded us that with this medicine Alex wont sweat when she's hot. Now that it's summer it's really important the we remember to hydrate her even more because her body wont let us know she's hot, and she wont be able to tell us that she's hot or that she's extra thirsty. Wonder if there's another alarm spot open on my phone?!?