We have made it over a 100 days without a seizure with no external cause. (The small one in May was a direct result of antibiotics).
We had Gabriel’s 3 month appointment with his team on Wednesday. They were very glad to hear that we had been seizure free for so long. We knew after 3 months with a seizure that we could start to ween treatment—either change diet or pull meds. We were hoping for a diet change because we having a very hard time getting him to eat again, somedays he will only have a couple hundred calories. We got a quick, big NO on changing the diet but a quick big YES on weaning a medication. So over the next couple months we will slowly lower the dose of one of his medicines. The ultimate hope would be to wean off medicines and go off the diet and stay seizure free. It is possible and has happened for some families. The diet is getting quiet a bit harder lately for a variety of reasons, it seems very hard for him to sit at a table and eat with other people now, he is also doing things like putting banana’s still in their peel in his mouth and trying to take a bite. He has been so good for so long that we haven’t had to keep all of the food under lock and key but that is no longer the case. It really stinks having to tell your children, “no you can’t have that” when he is eyeing fruit. For now we are sticking to it delighted at the lack of seizures and excited about giving him less medication.
Wonderful news! It’s amazing to see the difference with each med and diet wean. Praying for continued strength and courage.
Laurie, Thank you so much for all of your encouragement! It means so much to you! We pray for B and your family as well!