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.
Life with 4 Girls
2 years ago