September 25, 2006

Normal Life

Last weekend Evan had a seizure and it was clear that he had an aura (feeling indicating a seizure was coming) prior to the seizure. We were playing outside and he told me he was having a seizure. He didn't look like he was having one so I asked him to come over to me--he walked normally with no obvious seizure occurring. I picked him up and sat down with him on my lap and 10 seconds after he told me he was having a seizure, it began.

The seizure itself was pretty typical for Evan. He shook on the left side, had a goofy smile, never lost consciousness and was able to talk during it.

As soon as I picked him up, Aria said she needed to go into the house to get something and she was off. In no time she was back, wearing her watch--a craft kit Claire sent her to do while Evan was in the hospital last month. As soon as she reached Evan and I, she looked at her watch and asked me if his seizure was over. When I told her it was, she looked at her watch again and asked me how long it lasted. I told her it was a minute and 15 seconds. "Ok" she said with one more glace at her watch and then she was back to playing and Evan hopped off my lap and joined her.

I found myself fighting back tears. A 2 1/2 year old shouldn't know what a seizure is and a 4 1/2 year old shouldn't know you have to time a seizure. Neither of them were moved by this exchange--it's normal for them.

September 22, 2006

How's Evan Doing?

Seems like such a simple question and yet this is one of the hardest questions to answer. I never really know what people are asking with such a simple question. This is what runs through my head:

What is the real question here? How is Evan doing in a general way? He's fine, great actually! He started school and loves it! He's developed a solid obsession with Thomas the Tank Engine and it seems to be what his world revolves around. Or is the question more daunting? How is he doing in a medical sense? Hmm? What is really being asked? How many seizures is he having? Too many, that's for sure! He's having seizures almost every day and usually anywhere from 1-7 seizures in a given day. He had one at school too, so the teachers have something new to get used to. Maybe the question is really about surgery...we really don't know yet, there is some more testing that needs to be done, but we are certainly exploring that possibility. Is the question about medication? We still haven't found one that effectively manages his seizures and the chance that any med will work is drastically reduced--I'm not trying to be a pessimist here, but we're on the third drug and three is the magic number--if the third one doesn't work, subsequent drugs aren't likely to. Or maybe the question is about his walking and balance issues? He's still having PT once a week and is making good progress but he's probably got a lifetime of PT ahead of him.

So, all this runs through my head in about 2 seconds and then I give the answer "He's doing good."

September 19, 2006

Follow up w/Dr. Pearl

We had our follow up appointment (from the video EEG) with Dr. Pearl and he was more interested in talking about surgery than he ever has been in the past. It appears that all the seizures are starting from the same tuber and it is accessible. So there it is, we're back to the conversation about surgery. I guess we never really left the topic, but it seems to be creeping to the forefront.

Our goal remains the gain control over the seizures, hopefully through medication. The disappointing part is that it isn't working yet and he is still having almost daily seizures. So the new plan of action is to change Evan's medication schedule to three times a day instead of twice a day. He consistently has seizures in the evening, so the thought is that he may be metabolizing the medicine too quickly between dosages.

The next test is still the AMT PET scan in Detroit and we're waiting to get that scheduled.

September 16, 2006

Speech Evaluation

So we took Evan for a speech evaluation on Friday to get a developmental baseline and explore the possibility of speech therapy. He has a very large vocabulary but is difficult to understand. The question is: Is he hard to understand because he's not quite three years old or does he need therapy? They are basically on the fence about it and gave us a vague answer about therapy...we could persue it now or wait 6 months and see if he seems to need help in that area.

Whle we were at the hospital for the testing we ran into one of the neurosurgeons we met with and rounded another corner and bumped into Dr. Conry, a neurologist we saw for an additional opinion a few months ago. Kindof funny to see both of them in the hospital hallways!