Brandon was a healthy, normal 3 year old boy when our lives were changed forever. Brandon had previously had 3 febrile seizures due to high temperatures so when he fell over having a seizure on August 29, 2009, I wasn’t all that worried. Unfortunately, Brandon did not have a fever.
One seizure turned into two and then three and then non-convulsive status. We spent most of September 2009, in and out of 3 different hospitals. The hospital did every possible test that we could think of, including an MRI, spinal tap, blood tests and Video EEG. Brandon was put on Phenobarbital, trileptal, depakote, keppra and zonegran to try to find something that would control the seizures. Not only were the seizures not controlled, but he started having other types of seizures, including myoclonics, atonics, drops and absence seizures. After a tentative diagnosis of Doose Syndrome, we were sent home on depakote, keppra and zonegran.
The tonic/clonic seizures appeared to be controlled but Brandon was still having 20+ drops and myoclonics a day. I had to pull him out of school and out of all of his other activities. Everything in our lives changed. I was afraid to be alone with Brandon. My husband started working at home and my daughter, who was just starting first grade at the time, didn’t want to leave my side. She never knew who would care for her when she arrived home from school. She didn’t want to go to gymnastics or dance class anymore. We put carpeting and foam letters all over our floors so Brandon wouldn’t crack his skull when he fell.
Our previously happy, sweet little boy was now a droopy, angry, jittery mess. We resisted our neurologist’s recommendations to increase the meds and instead opted to try the Modified Atkins Diet (MAD). On November 16th, 2009, the day after Brandon’s 4th birthday - when he fell face forward into his piece of birthday cake - we started him on the Modified Atkins Diet. Our neurologist at the time encouraged us to try MAD first rather than go directly to the more strict Ketogenic Diet.
We fumbled through the first few weeks of MAD with no guidance and no real idea of what we were doing. We continued to spend our nights researching cures and treatments for epilepsy and I joined the yahoo support group for Doose Syndrome. Through that group I “met” a woman who urged me to see Dr. Bergqvist at the Children’s Hospital of Philadelphia and to consider trying the ketogenic diet. I really, really, really didn’t want to do keto. I liked the relative flexibility of MAD as opposed to the extreme strictness of keto. I was determined that MAD could be Brandon’s cure!
By February 2010, 5.5 months after the seizures started, we had secured an appointment at the illustrious Cleveland Clinic with Dr. Ingrid Tuxhorn, a neurologist who had studied in Germany under Dr. Hermann Doose. The best part about our trip to the Cleveland Clinic was meeting 3 other families who all had small children also suffering from Doose Syndrome. We left the Cleveland Clinic with instructions to increase Depakote and to switch to the full 4:1 ketogenic diet. We also left with a beautiful printout of Brandon’s eeg which actually had a NORMAL background with NO slowing! Despite still having 15-20 myoclonic, absence and drop seizures per day, the Modified Atkins Diet had normalized the background of Brandon’s eeg, which previously was only at 3-4 Hz background!!
With the support of the yahoo support group for Doose Syndrome, we embarked on the ketogenic Diet in April 15th, 2010 at the classic 4:1 ratio. We are one of the very, very lucky ones. FOUR days later the drops, myoclonics and absence seizures VANISHED, like MAGIC! About 30 days later, on May 20t,h, Brandon did have 2 tonic/clonic seizures but those were due to a high fever and an ear infection. Eleven days following the ear infection Brandon had 4 tonic/clonic seizures, most likely due to excess Powerade 0, (I didn’t realize the importance of following the strict rules of Keto – I never made that mistake again!) and that was it! We haven’t seen any seizures since June 1, 2010.
Brandon finished weaning his meds on March 13, 2011, and he is now a happy, sweet, kind little boy again! We continue on the Ketogenic Diet and are now into our 17th month and it is part of our life. Brandon’s ratio is now at a bit more manageable 3.25:1 and we are looking forward to dropping even further in the coming months. The Ketogenic Diet has become my passion. Not only has it apparently saved Brandon’s life, but it has saved our family. My daughter is happy and now eagerly participates in after-school activities. My husband is allowed to leave the house again because I am not afraid to be alone with Brandon.
Most importantly, Brandon accepts his diet and it is part of his life. He can ride a bike, go swimming, play with his friends, and go to school like other 5 year old children. He is finishing pre-k now and will be attending general education kindergarten in September. Thanks to the Ketogenic Diet, Brandon has been able to catch up on all that he missed while his brain was attacked by seizures. He has gained back all of his academic losses and is exactly where he needs to be.
If you are new to the shocking diagnosis of Doose Syndrome and are just reading this at the beginning of your journey, please consider trying diet therapy as soon as possible!! There are studies ongoing which seem to show a much more favorable outcome for the child, both seizure-wise and cognitively, the earlier the seizures are controlled.
JULY 1, 2012
UPDATE: Brandon is now weaning off the diet. He is currently at 1.5:1 ratio and enjoying more foods. We had a totally normal 24 EEG in December, 2011. We are hopeful that Brandon can be totally off the Ketogenic diet in September or October and eating foods like the other first graders.
Once he is off the diet, refined sugars will still need to be limited. We won’t have to weigh food anymore and Brandon will be allowed to eat fruit and bread and pasta and a complete bowl of cereal! I don’t think restricting refined sugars is at all a hardship. It is a healthy way of eating.