My son has had uncontrolled seizures since his diagnosis as a newborn with encephalitis. He's been on an ever changing cocktail of seizure medications. He's had a couple of medications that he's used consistently throughout his life with varying doses. They have NEVER given him a seizure free day.
Our nurse, Caroline, asked us about a year and a half ago if F had ever tried the Ketogenic diet. He never had. I was only vaguely familiar with the diet. I knew that it was VERY strict, but didn't know how it worked. I asked Caroline to research with Forrest to educate him all about it. I didn't want to get in the mix of things because I wanted this to be a decision he made for himself. Then Forrest and Caroline shared with me the information about the diet.
The Ketogenic diet is a high fat, adequate protein, and very low carb. It is carefully calculated for an individual's specific nutritional needs. They have used it in children with hard to control seizures. For some children it's a life changing. For others it may only make a slight difference or improvement. I hear it is most challenging for the children who eat by mouth. F is has a feeding tube so it would be a matter of formula. F had decided, without our influence, that he wanted to pursue this diet if he could get the blessing from his neurologist. I agreed to help.
F's neurologist agreed that it was reasonable for him to pursue the Ketogenic diet. She explained that it was complicated and that it required a lot of lab work and close monitoring. If after he met with the Ketogenic diet team he felt he wanted to move forward. She would assist him. She referred him back to pediatric neurology.
F, Caroline and I met with dietician and the pediatric neurology nurse practitioner. They explained everything. He was informed that he really was too old for the Ketogenic diet, but that a very strict modified Atkins diet would be more appropriate based on his medications, age, and protein needs. We received a huge education on the carbohydrate content of medications. Who knew that they added so many carbs. Liquid medications that are great for g-tubes are very high in sugar. They had to fine tune his diet based on the carbs contained in his medications. This piece of the puzzle was a lot of work. They carefully calculated out his protein needs. Then F did all of his baseline lab work. Nearly a year after starting the process F had everything in place to transition.
I think it was August of last year that we started the transition recipe. F was using Peptamen for his nutrition needs. We slowly integrated the Ketocal formula and Beneprotein into his diet as tolerated and weaned him down from his original formula. By October he was completely on the modified Atkins. GI wise he tolerated the diet fairly well. At first, he was a little low on energy and sleepy due to the lack of carbs. We started to notice other small changes in him. Forrest's asthma was improving and he seemed to produce less secretions. This bonus side effect is a HUGE benefit or him.
We met with his team again. We reviewed his lab work. Cholesterol was down. His baseline cholesterol on his original formula had been high. That was another bonus. We discussed how he's tired and has less energy. So the dietician recalculated the recipe and added MCT oil. MCT oil is medium chain triyglcerides which are efficiently absorbed for energy. Adding the oil was a transition as well. The tummy wasn't thrilled with the addition of MCT oil. To date, we still have not gotten him on the goal amount of oil that was the final recipe.
To date, F has seizure free days. I think the first month he may have only had a few days that were seizure free. I know it doesn't seem like a lot, but for him it was HUGE!! Slowly over time we continue to see improvements in his seizures. He had a set back with his seizures because of an unknown ear infection, but he bounced back quick. The true testament to this diet was the last few days. Forrest has been sick with a fever over 101. This in the past would ignite seizure clusters that would require sedating medications to calm. This time they were VERY mild. He's bouncing back from an illness that in the past would have immediately given him pneumonia and I believe that this diet has much to do with it.
F hasn't been on the diet long enough for us to truly know what the outcome may be. For some it can take a year or two to see significant changes in seizure patterns. F is beginning to get results by a decrease in seizure activity with some seizure free days thrown in the mix. He feels great and has had an overall improvement in his health.
I have provided links to resources. If you would like more information on this diet you can go to the Charlie Foundation. They have information on the modified Atkins as well.
http://www.charliefoundation.org/
Ketocal formula
Nestle's Beneprotein
About MCT oil
Please note that I am not encouraging or recommending this diet to anyone. I am only sharing my son's experience and benefits.
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