This post is from Kimberly’s cousin Kerry who found a link between food and Epilepsy after her daughter started experiencing seizures when she was four. Today, her daughter is 3 years seizure free! To read Kerry’s first post about the diet and her research, click here:Linking Epilepsy and Food
My 7 year old daughter was diagnosed 3 and a half years ago with Doose syndrome, a rare type of epilepsy affecting only a small percentage of those living with epilepsy. She was diagnosed in March of 2013 and the next four months consisted of her having myoclonic-atonic seizures (EMAS) accompanied by falling, clusters of seizures when falling asleep and one grand mal seizure.
We started to notice a link between her diet and her seizures. In fact, when she had a two-day stomach bug, her seizures were non-existent. We started to research the connection between epilepsy and various foods: wheat, gluten, soy, dairy, aspartame, etc. We journaled what she was eating and the amount of seizures she was having. Some days, there was a decrease in the clusters of seizures she was having at night and some days, they got worse. After two months of research, I stumble upon a low glycemic index diet for epilepsy patients that was developed by Dr. Elizabeth Thiele at the Massachusetts General Hospital in Boston. We then started to research: What is a glycemic index? What foods are low on the glycemic index? Why does this diet work for some people with epilepsy?
Doing our own research, we discovered that a glycemic index (GI) is a ranking of carbohydrates on a scale from 0 to 100 according to the extent to which they raise blood sugar levels after eating. Foods with a high GI are those which are rapidly digested and absorbed and result in fluctuations in blood sugar levels. Low-GI foods, produce gradual rises in blood sugar and insulin levels.
Next, we found a food list accompanied by the glycemic levels of each food on it. We made a list of those foods ranked below 50 on the glycemic index, shopped for foods and planned meals for my daughter according to that list. Within a week, her seizures had virtually stopped (although she still was on two medications to control her seizures). By October 9, 2013 we had implemented and tweaked this diet and she gained seizure control.
We did make an appointment with Dr. Thiele at Mass General Hospital, but the appointment was scheduled for the end of November and by the middle of October we were feeling comfortable that the version of this diet we were implementing was healthy and working for her. We made the decision to cancel the appointment at Mass General based on the fact that my daughter had a wonderful epileptologist at Children’s Hospital in Boston that she loved. He didn’t have a lot of information to give to us on the diet, but referred us to his colleague and a dietitian to discuss the type of diet our daughter was on. We met for two hours and they were impressed with the results, checked her vitamin levels and other factors, and determined that this diet was healthy for her. Essentially, the diet is a healthy low carb/low sugar diet. We have also eliminated peanuts and corn because we have seen her become “twitchy” during her sleep after eating small amounts of these foods.
Three years later, she has remained seizure free and both of her medications have been dramatically reduced slowly over this period of time.
What can she eat?
- Any meat without breading
- Any Vegetable
- Any fruit with the exception of pineapple and watermelon (higher sugar fruits)
- Sugar free pudding
- Sugar free jello
- Lower sugar juice boxes
- Whole grain pastas and breads
- Whole grain cereals with lower carbs (below 25 carbs per serving listed on the box, is usually the general rule we stick to)
- Any type of cheese
- Deli meat
- Ice cream
- Multi-grain waffles
- Multi-grain tortilla chips
- Cookies, chocolate, chips (in small amounts), Etc.
What does she not eat?
- Any type of nuts
- Corn (corn based foods)
- Unbleached flour products
- Foods with very high carbohydrates
- Foods very high in sugar
- Sugar candy (gummy bears, lollipops, jelly beans, cotton candy, etc.)
- Cheese Puffs (although we have found bean based ones called Beanitos that she can eat)
We found a great app, simply called “Low GI” on which you can input foods and find their glycemic index (it also contains many brand name foods). You can also put in the amount that you will be eating of a specific food and it will give you the glycemic index/ glycemic load and is color coded according to what you should or should not eat if you are trying to maintain a low glycemic index diet. There are also many websites that you can search to find more information and low glycemic recipes.
This is just our experience with this diet and we thank God every day that we stumbled upon it and it has produced such remarkable results for our daughter. We have talked to many people with epilepsy and people who have relatives that suffer from seizures, and many have never heard of a relationship between food and seizures. If you or anyone you know suffers from seizures, I recommend asking your doctor about it. If they don’t give you any information relating food to seizures, I would recommend getting a second opinion, seek out a dietician or nutritionist that can advise you, or journal the food intake of the person with epilepsy and research it more on your own.
My daughter was diagnosed with a rare, possibly debilitating form of epilepsy when she just turned four. We were extremely scared about what the future may hold for her. Now she is exactly three years seizure free and our doctor is calling Doose syndrome her “working diagnosis” based on the type of seizures she was having. In my opinion, her brain was not causing her seizures, the type of foods she was eating was causing a reaction in her brain that resulted in awful seizures. We never imagined three and a half years ago that our daughter would be living a normal, healthy life. If you think this may work for you or someone you know, look more into it…..it worked for us!