Tuesday, March 07, 2006

Some of you know that we spent last Thursday and Friday at Boston Children's. Austin had a follow up EEG. It went well. It was supposed to be a 23 hour and they removed the leads after about 18 hours. There has been no change since November. There is still the rare spiking in the frontal and left temporal lobes, but only at night. Obviously I wish it was normal, as it had been for a brief period, but I will take rare spiking over seizures anyday. This means a few things. First it means that taking away the Topamax had no negative effect, but at the same time we got rid of the side effects from it (ie- overheating issues, cognitive dulling issues, and loss of apetite issues...he's already eating better). Second, we have to keep in mind that any spiking is a possibility of a seizure. So we aren't home free, but we are still in a good place. Austin will stay on the Vigabatrin for a total of 1.5-2 years this time around. Which is fine by me, provided the FDA doesn't ban all med imports. I also had a meeting with his speech and special ed teachers. He has just about tested out of services. Meaning he is doing REALLY well. The question is are we happy about this? Granted I want him to be on par with his peers, but if there is even the slightest delays still or concerns over future development, will we have enough 'ammo' to convince the school district to extend services for another year. This is what we need to figure out. From a medical standpoint we have some ammo...spiking could mean seizures, which could mean regression and the brain lesion is in his speech center and they don't know what future ramifications this brain lesion will have. On the non-medical side, he's smart as a whip...knows his colors, shapes, uses sentences...getting there on his numbers and letters. The concerns are still sentence structure/grammar usage and immature social skills.

So that sums it up. Ben and Connor are doing well also. Connor's speech teacher is happy with his progression also. He is now putting two words together at times. This is a big step. I just wish Connor would pick up more from Ben. He is such a good model.

Think that's it for now. I will post a pic of Austin at his EEG at some point.


No comments: