So it's been almost 3 week since we were supposed to go to Boston for Austin's EEG. I still haven't figured out what we are going to do. I am conflicted.
The insurance company wants us to stay home and have it done at the local hospital...but I am not sure I have faith in them. I called and talked to someone in the EEG lab. He said they only do ambulatories for 24 hour EEGs. I am not sure if that is the best solution. Austin has had 2 ambulatory EEGs from there. Both were supposedly normal. I say supposedly because those were the ONLY two tests that have ever read as normal. I asked the tech about the process for reading these ambulatory EEG's and if they pick up everything. He said a computer reads it and that it should pick up everything. On the other hand...it's so much more convenient.
Part of me feels like giving in to the insurance company and having an ambu test done...but what if it comes back normal again...when he hasn't had a 'supposedly' normal EEG in over 18 months and it was one of their ambu tests that said it was normal. I will not be happy if it turns out to be a waste of time.
I have a call into the neuro at Children's to get his opinion. As much as it's a hassle to travel 3 hours for an EEG, especially during the holidays, I want him to say that he'll be willing to fight the insurance company to get this covered. At the same time I need to talk to the neuro about the ERG, electro-retinography. This is for his peripheral vision. He is due this month but they generally schedule 3 months out. I am not pushing to have this done. Jeff and I both feel the possible peripheral vision issues are really a non-issue. It's more important that he is seizure free. Besides, I am not eager to put him under general anesthesia again after the last time. That said, I know the neuro is going to tell me it should be done.
So many decisions to make...and I just don't have the mental strength to make them. Any one have any opinions eaither way?? I appreciate the input.
On a more positive note...Connor is doing so well in his special needs school. The teachers love him and I always get great notes from them in his therapy book. I can't wait until his parent teacher conference though so we can talk more in-depth.
Ben is also doing great in Nursery school. He is at least 6 months younger than all the other kids, but he appears to be holding his own. I am so proud of him!