Sunday, September 20, 2009

Visit to Chapel Hill

We had a good visit with Jake in Chapel Hill this weekend. However, we did meet with the pediatric neurologist as planned and although he didn't have anything new to offer in terms of treatment he did stipulate that he didn't feel the baclofen pump was in any way interfering with or otherwise affecting his seizures. He also confirmed that we were probably at the end of trying all the anticonvulsants that would be available, which we also knew.

Basically, here are our options at this point:

1) Ketogenic diet - high protein, high fat diet that has shown to reduce seizures in some epilepsy patients. Click here to learn more.

2) VNS - vagus nerve stimulator: a device implanted in the neck that sends a mild electric shock to the vagus nerve. To learn more click here.

3) Epilepsy surgery - obviously, a very last resort and one that we are definitely opposed to at this time. This involves removal of the damaged brain tissue and carries a significant amount of risk.

The doctor advised us to proceed by going with the least invasive option first and moving up. So, we will probably look at the diet first. The difficultly with the diet is that you have to eliminate carbs and that's mostly what Jack eats. We will seek a referral from our doctor to a nutritionist and then go from there.

That's all for now.

Thursday, September 17, 2009

Chapel Hill...finally

Sorry it's been way too long since the last entry but we did get a call today that there is an opening with the pediatric neurologist in Chapel Hill that we've been wanting to see. We had thought we weren't getting in until October so this is good. This particular doctor is familar with Jack's type of seizures AND the intrathecal baclofen pump so we're hoping that he can provide some guidance on our next steps.

We will be heading up this weekend and of course, will be visiting with Jake.

We will keep you updated.