James’ Story- Success with the MAD diet to control his seizures
It started before we knew it started. In the Spring of 2010, when James was 3, we would find him asleep in weird places during the night and middle of the morning. He would be behind the couch or behind a chair and was in such a deep sleep we could not wake him up. We figured it was a growth spurt or he wasn’t sleeping well at night.
Then one night (May, 2010) he came to me in the middle of the night. He couldn’t talk to me, so I took him back to his room to lay with him. Then he began to shake. I waited for it to stop, thinking it was a dream. Then I tried to talk to him. I touched him. He kept shaking. I went to get my husband who tried to wake him up. James appeared to be awake, but he was in a stupor. James’ eyes were open, but he wouldn’t talk and just stared. I just held and rocked him until he finally responded and put him to bed.
The next day at the doctor’s office while I was explaining what had happened. James fell backward, lay on the floor, and was shaking. The doctor was writing notes and I told the doctor, “I think he is having a seizure.” The doctor looked at me like I was crazy, but quickly saw I was right. That was the worst seizure James has had. We took an ambulance ride to the hospital and went through all the tests. They came back normal. We did a sleep deprived EEG. That came back normal. We were told it was probably a febrile seizure (with no fever) and wouldn’t happen again.
That summer James had some accidents. He seemed to trip a lot and fell off some bleachers at a baseball game. We started to notice some weird jerking movements, out of the corner of our eye, during the day. They were very fast and nobody noticed them unless they were looking right at him. Finally my husband and I asked each other if the other had noticed something. We both had the feeling that something wasn’t right. We decided to go back to the doctor who sent us to a pediatric neurologist. It is now August 2010.
The EEG came back showing seizure activity. James was prescribed keppra, a dose so small I had to use a medicine dropper to measure it. It worked for awhile. The myoclonic jerks would come back. We called back in to the neurologist and the dose would be increased. Again. Again. Again.
In March 2011, around his 4th birthday, different seizures started to emerge. At the time we didn’t know the names, now we do- head drops and atypical absence being the worse. I remember trying to leave in the mornings and the shakiness he would have. He couldn’t talk to me, but he could look at me. Or the drives over to his daycare provider where they would start in the car. We called in and were put on topomax. Then things got really bad for a couple days. We learned about diastat and rescue plans.
In April 2011, a new overnight EEG. He performed beautifully. He demonstrated all the seizures we were concerned about but couldn’t explain. We were scheduled to stay for 2-3 nights, but after 1 night, we got the diagnosis of Doose. Depokate was added to his Keppra. The neuro talked about the ketogenic diet and encouraged us to learn about it. When she left the room, I googled it and came across the Modified Atkins Diet. A dietician came to talk to us about the diets. She wasn’t encouraging. When I asked about her success with the diet, she commented that is was hard to implement effectively and the best success she had was tube fed patients. She said we sure could start with the MAD diet. Just limit the carbs, push the fat. See how it goes. That was the amount of our education. (Okay, maybe a little more, but that is all I remember. I was still in shock from it all.)
I read a lot on the internet. I learned how to tweak the diet. I started a seizure/food diary. I connected with the Doose yahoo group, which ultimately gave me the courage to stick with it and the help to figure it all out.
May 2011- James started to have some really shakey spells and trouble with constipation and bowel control. We did a video consult with the neuro who commented that depokate can have that effect. In hindsight, I think he was ketotic with a combination of starting the diet and adding the med. We stuck with the diet. We learned to monitor his protein, coat everything in fat, and be creative with the carbs.
In June 2011, we realized we hadn’t seen a seizure in a while. We looked back in the journal and didn’t dare hope, but his last documented one had been mid-may. I e-mailed Dr. Kossof to see if Doose patients ever responded to MAD, or they all ended up with keto. His response gave us encouragement. He said that some Doose patients have complete success with MAD. We were scheduled to start keto in July. We asked for an EEG to see if MAD was doing the trick. During the EEG, he had jerks in his sleep. We shed some tears believing he was not better. The results of the EEG? Much improved over last time, no spikes, but background slowing. The jerks were benign myoclonus. JOY, OH JOY. We received the okay to stay with MAD.
In October 2011, we have been using the MAD diet with James for 6 months. He continues to be seizure free. We will wait for another EEG before we start weaning meds. I feel blessed and grateful that he started on the diet right away and we didn’t wait for more medicines to work. It is amazing what food and diet can do to heal the brain. James is back in preschool. He has been growing well. My husband often comments how well he is thriving.