What an emotional 4 days it was in Chicago at the Ketogenic conference, but it was absolutely amazing! I got to talk to expert doctors, nurses, and dietitians and get advice about Joshua and hear the most recent research regarding the ketogenic diet for epilepsy which was outstanding and is exactly why I went. In addition, I got to meet so many wonderful parents of kids with epilepsy, most having Doose syndrome as well. Nothing is more therapeutic than being around people who really 'get' what it is like living with this nightmare. I got to pick their brains about all things epilepsy, doose and diet related and their information was invaluable! I met just incredible people who I will always treasure and hope to remain in contact with them long after our epilepsy journey ends (and I am determined that it will end some day).
The consensus in talking to the experts and the parents (most of the time I think the parents are the experts) in Chicago was that we should move Joshua from MAD to the Ketogenic diet in order to eliminate Joshua's remaining seizures. We have been on MAD now for close to 5 months and although Joshua has had an 80% reduction in his seizures, he still has daily myoclonic seizures that we cannot seem to eliminate. Below are the take-aways from presentations and/or conversations during the conference that stuck with me the most regarding switching diets.
1) "If Joshua has Doose syndrome, you owe it to him to switch to Keto to see if it works"
2) Doose is the one diagnosis where switching from MAD to Keto has resulted in seizure freedom (other non-Doose diagnosis still had a 30% improvement when switching from MAD to Keto)
3) The classic ketogenic diet is the most effective treatment for refractory epilepsy
4) The ketogenic diet is the #1 treatment for Doose Syndrome
5) "Joshua's brain is still seizing every day and until you get it to stop his brain will continue to know how to seize and it won't stop. You need to train his brain how not to seize and the diet will do that".
6) It is possible for children with intractable epilepsy to become seizure free and med free
7) "The Myoclonic seizures are the hardest to get rid of - Keto is your best chance"
8) The ketogenic diet can cure the brain; medications (if they work) only stop the symptoms
9) 80% of patients will remain seizure free after coming off the ketogenic diet
10 You can start reducing medications after only 1 month of seizure freedom
After the conference, I feel very strongly that we need to switch to the ketogenic diet if we are going to have a chance of stopping Joshua's seizures and getting him off all the medications. Therefore, I called Swedish yesterday morning and we have a consultation appointment scheduled for October 29th (the soonest we could get in). This appt. is required before they will start you on keto and after the appt., they will schedule his hospital admission. We have to be admitted for 4 days to start the diet for medical monitoring and training with the keto team. We will stay with our neurologist at Mary Bridge as we love her, but we will have our keto team out of Swedish since Mary Bridge hospital does not administer Keto. I am hoping we can get Joshua started on Keto before year end so we can get his seizures eliminated as soon as possible.
We are almost done with the Depakote wean - Thursday morning will be last pill of Depakote!!! We are so excited to have him off Depakote. He is still on Zonegran and Zarontin, but if we can get him seizure free on Keto we will begin weaning those drugs as well (one at a time of course).
Joshua started back to preschool (he attends developmental preschool 4 times a week) a few weeks ago and he is doing really well. His teacher is impressed with how much more energy and more involved and interactive he is this year. Last year she only saw him for 10 days in June and he was on a lot more drugs and had just started the MAD diet so he was very lethargic and did not participate in much at all. It is nice to hear he has made some great improvements in the short time we have been on MAD and weaning Depakote. Although we are still having potty issues and behavior issues, we are greatly improved on where we were a few months ago and that is something to be thankful for. He can even play Candy Land now and knows how to move his player - this is something new for him and is so exciting!
Seizure count has not been great lately (another reason we want to switch). I was hoping August would go down, but it actually went up from July. Below is a re-cap of the last few months for the trend purposes. And, although September is not over yet, he is already above the count for July so we can't seem to get back to our lowest point. I am hoping that Keto will be our answer.
Keep in mind these are approximate numbers as we do not catch all of his seizures.
April - 700+
May - 375
June - 332
July - 137
August - 239
It feels good to have a plan and to know we will be doing everything we can to make Joshua better. We are going to get Joshua seizure free, med free and developmentally back on target if it is the last thing we do!
