His last medication dosing was the evening of Thursday, December 12th and it was so thrilling to be able to give him his last medication and to know we are done with that. To think that in the beginning he was on 3 medications at high doses with little help to control his seizures and a lot of side effects is mind boggling. I am amazed every day that the Keto diet has brought our baby back to us and allowed him to wean off 3 medications!
Equally exciting is watching Joshua become more animated and involved in his life while coming off his medications. He is talking so much now, playing so much more, pretending, and all around enjoying his life so much more. It is such a big difference! For those that remember what he was like a year ago, they just can't believe it as they sit and carry on a complete conversation with him now. It brings tears to my eyes every time to think of how far we have come.
As Joshua has been weaning off all his medications I had high hopes that the meds were causing Joshua's cognitive delays and that we would see massive improvements in that area when he came off the meds. While we have seen some great improvements in his abilities, he is still cognitively delayed compared to his peers and struggles to do basic things in school (like recognize letters or numbers, write, etc.) so we have to face the reality that some of his cognitive delays may not be due to the medications and may be permanent. I am thankful for his Developmental program as they really tailor his school learning to him and I've seen him grow a lot this year. It is a hard thing to wonder if his cognitive delays will remain forever now that his seizures are under control and his medications are gone, but the delays are still there. The long-term prognosis for Doose kids is all over the board to kids who completely recover to kids that remain with deficits so it is difficult to assess where he will end up. I hold out hope that new neuro pathways will forge in his brain the further we are removed from seizures, but we just don't know at this time. We will continue to take it one day at a time and one grade at a time and deal with it as it comes. For now, we are happy with no seizures, no medications and for having a happy little boy that plays with his trains again!
Here are some pictures of Joshua take his last dose of epilepsy medicine!!!!!! It was surely an early Christmas gift for all of us this year!
