Saturday, August 29, 2009

Neuro updates

I love our neurologist. He is a private practice, and he doesn't take insurance. It's the only doctor we pay to see, and he is worth every penny. Yesterday he was closing his office at 11:30, because he is leaving for vacation for a week today. He had us come in at 11:30 and stayed a whole hour talking with us! There is never a rushed feeling with this doctor, and he is so personable and caring. We love him!

So. He says that the seizure was most likely a generalized seizure. The odd thing is that her hands weren't involved, but he thinks that the hypoplastic corpus callosum might be messing with electrical pathways, so her arms were spared. We looked at her old EEG results, because they have always showed spiking in certain areas. He said that those areas would explain the seizure for sure, it would involve the same movements and appearances.

She has been on a low dose of Neurontin for years, ordered by the GI. It helps with her gut hypersensitivity, and lowers retching and gagging. He is upping the Neurontin to a full epileptic dose, since she tolerates the drug well with no side affects. Most seizure meds have side affects that we want to avoid if possible. He also gave us Diastat to keep with her at all times and at school.

Our rules now are that if she seizes again for more than three minutes, I am to administer Diastat and call 911. If she seizes for less than 3 minutes I am to call him and let him know, but no need to call 911.

Being that this is her first seizure, we are doing an EEG. I have to call Monday to schedule it. He says that although they said she had a UTI, it was probably caused by the heat. It has been almost 100 degrees here, and she just doesn't tolerate that. We are going to my parents house today, they have AC.

Please pray that the seizure was a one time thing. It was so scary, and I felt so helpless!!


Junior said...

Isn't it great to have a good neuro. Hope the Neurontin works to prevent any further seizures.
Big hugs

Lacey said...

We went through a period of a few months were we were always using the diastat. He kept having seizures that would last longer than 5 mins. Its still in our cupboard just in case but he hasn't had a long nonstop one for a while. That doctor doesn't take any insurance? Thats weird.