Meet Paul - An Awesome Doose Warrior
Paul was a healthy, normal 3.5 year old boy who had just become a big brother when he had his first seizure. I got a phone call that Paul had a seizure on the playground at preschool and that the preschool had called 911. I was at home with a 2 week old newborn baby, and was terrified and hysterical. I knew nothing about seizures, neurologists, or the world of drug-resistant epilepsy that we were about to enter. After he had his 2nd seizure at school (6 weeks after his first seizure) his neurologist ordered an ambulatory EEG. While he was getting hooked up for his EEG at the clinic, he had a seizure (first one witnessed by me, his mom). The attending neurologist sent us (again) to the ER where he was started on Keppra.
While Keppra seemed to control his “big” (tonic-clonic) seizures, he started having jerky arm movements, and would routinely fall off chairs and begin crying. We knew something was wrong. My mother (a nurse) identified these as myoclonic seizures. We were finally admitted to the hospital (CHOP) for an overnight EEG where Paul was diagnosed with Doose Syndrome. From there, Depakote was added to his medication regimen. The neurologist at the hospital told us that the drugs might not work. He said we might need to try “5, 6, or more” drugs to find success. He also mentioned the ketogenic diet to us at that point as a very effective treatment for Doose. However, at that point, we felt that the keto diet was “extreme” and not a possibility for us. So, we proceeded to trying Depakote.
Depakote did help reduce his myoclonic seizures. Paul was having about 12 seizures/daily (a mix of myoclonic and tonic-clonic), but after reaching a maximum dose of Depakote, Paul was still having daily seizures. We were faced with adding a 3rd drug, or trying the keto diet.
I (Paul’s mom) have a PhD and work as a medical writer. My job is to read and analyze scientific literature. I was well-read about Doose, and as a scientist, I realized that the ketogenic diet is the most effective treatment for Doose. However, as a parent, the thought of doing the diet with Paul made me feel physically ill. Paul was a tough kid. He was hyperactive (made worse by Keppra) and a picky eater (chicken nugget and pizza junkie). We had an infant at home, and my husband and I did NOT agree about starting the diet. It seemed impossible. However, we eventually reluctantly agreed to start the Modified Atkins Diet (MAD) since we could start the diet at home (without a hospital admission), and it seemed more “doable” than the classical keto diet. We picked a day on the calendar and started.
The first few weeks of the diet were miserable. There was crying, fighting, and tears (from the kid and parents). It was HARD. He refused to eat anything, had some vomiting and hypoglycemia. BUT, thanks to the support of other families on the Doose Facebook page, and to the help of the dietiticians at our hospital, we found a way to make it work. After 2 months on MAD, Paul’s seizures STOPPED.
After we found the magic of the diet, Paul remained on the MAD diet for 2.5 years. He was eventually able to wean off both drugs, and remained seizure-free on the diet alone.
Today, Paul is 7 years old, and just came off the MAD diet this year. He is starting 2nd grade next month, and he is in a normal elementary school class without any special medical needs. Paul does have an IEP at school to help with focus and fine motor skills, and receives occupational therapy. But overall, his intelligence is normal for his age, and he can participate in all school activities with his peers.
If you are new to this journey, I URGE you to please, please consider the keto diet. It seems impossible. But it is not impossible, and it works. The data shows it is the single most effective treatment for Doose Syndrome. It does require an extraordinary effort, but it can be done, and it is worth it. The diet gave us our son back, and literally saved his life. Now, I feel like Doose is in our rear view mirror, and we are enjoying life on the other side.
I hope some aspect of this story resonates with someone. Please get connected with our community on Facebook for other parents who “get it.” This is the hardest battle you will ever fight, but you will do anything for your child. I pray that your children will find seizure freedom, and that you will benefit from the support of this community of strong, strong parents.