Doose and the Ketogenic Diet

June 20, 2013

My son, Cooper, is a 41/2 year old amazing little gentleman who has been diagnosed with Doose Syndrome, which is a type of epilepsy.

On March 29, 2012, he was diagnosed with Doose Syndrome or Myoclonic-Astatic Epilepsy (MAE).  This is a rare form of epilepsy.  One in three hundred people are diagnosed with Epilepsy and about 1-2% of those aged between 0-5 are diagnosed with MAE.  With MAE Cooper experiences different types of seizures; myoclonic (jerks/twitches), myoclonic-astatic (drops), and tonic-clonic (convulsive or grand-mal).  The majority of the seizures he has are myoclonic and/or myoclonic-astatic.  He has been having an average of about 10 a day with the most of 40-50 in a day. His worst day having 70. I know that this sounds like a lot but many kids that have this syndrome record up to 150 or more in a day.  So we feel very blessed that he is on the lower end.  We have been seeing an epileptologist at Children’s Hospital in Denver, CO since then.  Cooper has tried a total of 8 different medications.  Some of these are just because he is on the Ketogenic diet.  He has failed 4 medications that made his seizures worse.  As of now he is on Depakote sprinkles, Onfi, Sodium Citrate, and Carnitine.

We started the Ketogenic diet on August 27, 2012 which is a high fat, medium protein, low carb and little to no sugar.

In order to prevent seizures, some patients choose to go on the Ketogenic Diet.This diet puts your body into ketosis which means that your body creates ketones to burn as fuel instead of sugar. Whenever someone is placed on a medication, that medication only has 2-5% chance of working. This diet has a 60% chance of working, so we are feeling very optimistic about this method.

During the summer of 2012 Cooper would barely make it off the couch to go to the bathroom.

He was able to muster up strength to get out of bed and get to the couch for the day. He hardly spoke, hardly ate, and hardly played. We were watching our son slip away. When we began the diet we truly had no clue what it all entailed. We were trained in the hospital on how to prepare his meals. To have to make a complete other meal for every meal is something I believe my husband and I both struggle with.

During our hospital stay we were told to expect plenty of throwing up and pooping. Cooper tolerated the entire week with only one episode of throw up. The first two days of the hospital stay were in a sense a cleansing of his body. He was allowed to drink as much crystal light as he wanted, and he was allowed a specific amount of Keto-Cal to drink to transition into the foods he would be eating. He was excited to eat, and got too big of bites and ended up throwing up then.

Going home was a challenge because as much support and information we had been given in the hospital, we felt like we had no clue what to do. We gained confidence as we created meals through the food program the dietitians gave us at Children’s Hospital.

We experienced him throwing up at almost every meal for about week or two straight. This tapered off as his body adjusted to the foods. If I am remembering correctly this was about two months into being on the diet. His initial calories were set at 1350 for the entire day. For instance he was able to drink the heavy whipping cream, bacon, coconut oil and half of one small strawberry.

He began gaining weight.

I believe in just a few months he went from size 3 clothes to size 5 just after his birthday in January. The dietitian was concerned and we immediately had to lesson his caloric intake. We dropped down to 1250 calories. I thought he would be hungrier, but he actually had more energy and began wanting to do more. It was at this point we began to see our son shine through the medicated seizure eyes.

We began to see life in him. We had to recreate all the meals to adjust for this reduction, but he handled this just fine. He fell in love with a pancake recipe we found, and the “pizza” that he gets to have. We stayed at this level of calories for about another month. We noticed that his weight was not going down, but still going up. The dietitians immediately lowered his calories again to 1100. This seemed again like such a drastic drop, but brought out such a different side in Cooper that we had not seen since March 28, 2012.

It was now January. He began losing weight and I believe it was at this point that we began seeing more true effects from the diet. His energy skyrocketed, he began telling jokes, and laughing again. We started to get our son back.

We had been told by other parents they saw seizure freedom almost right away, some said after 18 months, and some others said in was right around 6 months. We experienced 6 days right out of the hospital which was the longest we had gone since the day he was diagnosed. We got really excited, and then our true journey with the diet began.

Our hopes that this was going to cure his seizures were crushed. He tolerates the meals really well, and only in the last few weeks has been asking for what others are eating. He also seems to truly understand the consequences if he does stray from his foods and drinks. We have experienced days that were worse than before the diet and we have days that we forget he has epilepsy. We have found that some foods for him cause more seizures, and some days we could not figure out what went wrong because we did everything the same. The really yucky thing with Doose, and maybe any epilepsy is that there is no rhyme or reason to when the seizures occur.

We now, to date, have gone 12 days in a row of seizure freedom, which was amazing. He experiences nocturnal seizures and a few drops here and there, but as I am typing this, my husband is doing statistics on his seizures and he found that since beginning the diet Cooper has had a 50% seizure reduction.

He is still taking meds along with the diet, and we continue to create new meals for him to have a variety here and there. We continue to tweak the diet to get it specific to him. He is not in seizure freedom but a work in progress. We remain hopeful because we have seen such a difference in his behavior and in his eyes. We remain hopeful because we were never promised an easy life, but that life would be worth it.

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