This blog post was written by Kimberly’s cousin and her husband. Their daughter was diagnosed with a form of Epilepsy when she was four years old and through their own research, they were able to prevent future seizures by linking food to epilepsy. Their goal is share this information to help others, who also suffer from epilepsy, prevent future seizures.
Our four year old daughter was diagnosed with “Doose Syndrome”, a form of epilepsy, shortly after turning four in March of 2013. Her diagnosis was based on the types of seizures she was having. At the beginning, we thought that she had a “tick” where she would grunt and make a pronounced head nod. Shortly after we had brought her to her pediatrician, she started to fall while making the grunting noise. We quickly made an appointment with Children’s Hospital Boston and she underwent her first EEG. As she lay sleeping on the bed, my husband and I were convinced that they “weren’t going to find anything” because she appeared to be having a normal sleep.
We were shocked and devastated when we got the call at six o’clock that night from The Children’s Hospital
neurologist announcing that our daughter has a rare form of epilepsy called “Doose Syndrome” which is a generalized epilepsy. She had the potential to have all types of seizures and needed to be put on medication immediately that night.
The next four months were the longest, most devastating months for us and our little girl. She did have one grand mal seizure and we needed to call 911. Luckily she was out of it when the pack of firefighters arrived. There were trips to the Children’s Hospital ER and various increases of Keppra, her first medication, and eventually adding Depakote as a second medication. That summer, we held our breath and watched her fall asleep every night, on a mattress on our bedroom floor.
Her medication had been increased, but her seizures were more frequent. She would have a cluster of four to six quick seizures a night, in which she would start to fall asleep, start to have a seizure, lose her bladder control and wake up. If she could get past the initial ten minutes of sleep, she was usually fine. But the nights that she couldn’t get past the initial ten minutes of sleep, she would have repeated seizures. She had them in the car, if she started to fall asleep and once on the beach as she started to take a nap.
We were distraught parents trying to figure out what to do for our precious girl. We talked to doctors, read, researched and prayed to God to help our daughter.
When she had the seizure at the beach, we were at our wits end. We were at the end of our vacation in Cape Cod with my parents, which consisted of her usual 4-6 seizures every night of vacation; my husband and I called back to the house on our anniversary date night due to the cluster of seizures; and ended with the seizure on the beach. Although…..because of that trip, the course of my daughter’s epilepsy changed. Before we went to the cape, we had stocked up on all the foods the kids loved and all the food that we could put my daughter’s new epilepsy medicine in, so she would eat it … ice cream sandwiches, Reese’s peanut butter cups, brownies, etc.
When we returned from the trip devastated and exhausted, we didn’t get to the grocery store for a few days and we didn’t have too many snacks and gave our daughter her medicine in yogurt. We definitely noticed a food connection, because as soon as we were home, her seizures stopped for a couple days. We thought back to a couple months before when she had the stomach bug and her seizures had stopped too.
We started to read everything about food being related to epilepsy. We kept a journal and first tried a gluten free diet since there was some information about gluten and epilepsy, and my nephew has celiac disease. We kept a journal of everything she ate and how many seizures she had each night. Sometimes she was fine for a day or two and then the seizures returned. We tried to eliminate soy and aspartame and whatever foods we read about that may have had an epilepsy connection.
Then as researching, I stumbled upon information about the Low Glycemic Index Treatment diet for epilepsy. It was developed by Dr. Elizabeth Thiele of Massachusetts General Hospital, right in our home state. We started to figure out what a “glycemic index” was, “a system that ranks foods on a scale from 1 to 100 based on their effect on blood-sugar levels.”
From what we read, if a food was 50 or below on the glycemic index, it was better to eat than higher numbered foods. So we made lists of all the possible foods she could eat that were below 50 on the glycemic index, which consisted of all meat, mostly any fruit (except watermelon, pineapple, and a couple more with a high sugar content), and all vegetables. Even though it sounds like a generous diet, all foods with a lot of carbohydrates were not on the list (pastas, waffles, anything with breading, and cereals, candies, cookies, and cakes), which was a difficult diet for a four year old who wanted to eat chicken nuggets, peanut butter sandwiches, and mac and cheese, plus all the yummy snacks.
It was difficult to figure out and implement at the beginning, but we stuck to it and the seizures stopped three days after starting this new diet, at the end of August. In the meantime, we made an appointment with Dr. Thiele of Massachusetts General Hospital, but couldn’t get an appointment for almost three months, which was a blessing in disguise, because in the meantime we figured it out. “Figuring it out” meant, using the glycemic index to guide what she was eating, writing it down, observing her at night and adding that information to our journal. From the end of August through the beginning of October, we “tweaked” the diet and observed the results. We followed the glycemic index and added whole grains. We also observed that corn and peanuts were triggers for her seizures and/or twitching.
As of October 9th 2013, our daughter has been seizure free. We cancelled the appointment with Dr. Thiele because we were hesitant to leave Children’s Hospital, as our daughter was comfortable there. Instead we met with her Epileptologist’s colleague, and a dietician at Children’s Hospital. They both prescribed and monitored diets for epilepsy patients and talked with us for hours about the diet she was on. We met with them in late November, after we had her diet and seizures under control. They did tests to monitor her vitamins, etc. and everything was normal. We talked with them for two hours and they suggested that we continue with the diet and to follow up with her regular Epileptologist (who had little knowledge about the diet piece, but gave us great advice otherwise and our daughter loves him).
She has remained seizure free and has had three clear EEGs since. In the meantime, we found a great iPhone app., called Low GI. This app is amazing because you can input the name of any food and amount (including many packaged foods) and it will tell you the glycemic index.
Her medication has been reduced many times in the past year, and she is now on the path to eliminate the Keppra and to maintain seizure control on only one medication. We are able to give her healthy “treats” and small amounts of the regular “treats” that all kids want.
This diet has been a lifesaver for our daughter… and for us. For her, it has not been very restrictive and is just a “healthy diet” rich with lots of protein, fruits, vegetables and whole grains. We have talked to many parents, relatives and adults who have epilepsy, who have never heard about the link between epilepsy and food. Maybe it is not the answer for everyone, but for our daughter, the diet is a huge factor. Because of this, we want to share our story to hopefully help someone who suffers from epilepsy to understand the link and prevent future seizures.
Today, we are all huge supporters of the Epilepsy community, especially after the passing of our cousin, Kimberly. We participate in “Lemonade for Livy”, a fundraiser that creates epilepsy awareness, several walks and epilepsy-related events and are active members of the Living for Kimberly Foundation.
(Quick note: Although epilepsy can be hereditary, Kimberly is not blood-related to her cousin’s daughter. As mentioned previously, Kimberly was unaware that she had epilepsy and no one in her family had epilepsy.)