Thursday, September 24, 2015

It's time again to call the neurologist

But, in all honesty, I don't want to. I am already a little late in making the next appointment, and if I don't get on it soon, I will veer from just plain old every day scatter brained mom to truly bad and negligent mom. I am really coming rather close to the dividing line between the two. But I have a reason, I really, truly do.

After our last anti-seizure medicine disaster, it took a while to wean H. from it. (That's one of the problems with this whole little endeavor... it just takes so stinking long to go anywhere.) We were going to monitor her for a month or so and then call and make an appointment to start the fun all over again. But I don't want to start again. I know it's important, so you can save your lectures, yet I have some very good reasons for my reluctance.

You know that learning new things is something that is difficult for H. It takes her significantly longer to really learn and remember something than it does for a child whose brain is formed normally. She works hard for every gain. She probably works the hardest of all my children if the truth be told. The downside to every single medicine we've tried is that it makes it that much harder for her to learn and remember. It has been interesting having her off all but one drug over the past few months. We've seen amazing and fantastic progress over the past couple of weeks. She is doing things now that she struggled unsuccessfully with last spring. Counting by 5's? Check. Being able to name 2-digit numbers? Check. Able to define words that she already knows? Check. She is so proud of herself for being able to do these things.

Last night, though, I discovered exactly how great her gains have been. I know I've mentioned before that in most areas of life, she is an imitator being unable to come up with things on her own. She is quite happy to copy other people's pictures, copy the games they are playing, copy just about anything they are doing. It's a stage, and an important one, but I was wondering if she would ever be able to leave this stage and advance to one with more original thought. I was not feeling overly hopeful.

So back to last night... right before bedtime she shows me a picture that she has drawn. I was absolutely floored. She had drawn multiple images that I hadn't seen the other children draw recently or ever. One of the things H. drew was an ear of corn, one of her favorite things. I'm quite sure that no one else has drawn an ear of corn. And it was identifiable. There was a husk and kernels, and better yet, the word corn written out in inventive spelling. I'm not sure if I can adequately exactly how amazing this is. Before, H. has written words when they have been in her phonics books, and then she is doing more copying than anything. Even when the K. started doing massive amounts of inventive spelling, it just wasn't on her radar. it was as if the possibility didn't even exist for her. Yet last night I looked a paper that contained five or six drawings and the words which labelled them. While the spelling was indeed quite inventive, I could read each and every one of those words.

And now, perhaps you can understand my lack of enthusiasm for making our next neurologist visit. Because hand in hand with these intellectual jumps, we have seen a little more seizure activity than before. Nothing huge, but they are there. And the current line of thinking about seizures is that it is never good to have them uncontrolled. A brain allowed to seize is thought to always increase in activity and the areas that are involved. If you look at the literature, it doesn't take too much looking to see a progression of uncontrolled seizures leading to stronger uncontrolled seizures leading to death. Surgery is often detailed as the only option for patients whose seizures cannot be controlled with medication.

It is not a pretty picture. Once again, I feel left with a rather pathetic pair of choices. Drugged child (and I've seen what that's like and it isn't pretty, or for her effective) or surgery or death. Great. Yet when I ask specific questions of the neurologists I've talked to, it is still rather a vague science. There is so much they don't know. I find the whole thing incredibly frustrating.

But I guess I need to make the phone calls I've been putting off tomorrow, lest I fall into the negligent parent side of life.

1 comment:

Shecki Grtlyblesd said...

I can totally understand not wanting to slow down the already slow cognitive gains she's making!

We had kind of the opposite experience. Luke was having little seizures, and the neuro offered to medicate him "if we wanted." Well, I said, thanks but no thanks, we'll just deal with his arms flying up over his head once in a while. The seizures got more frequent, and we decided to go ahead and medicate after all. He made progress after his seizures were under control. As the neuro says, "It's hard to learn with an electrical storm going on in your head."

I hope you find the sweet spot of controlled seizures without losing cognitive progress. It's such a tightrope! And when they gain a little weight, the balance is thrown off again.

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