Epilepsy & Diet: How we are working to control Seizures

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I may have mentioned this  a few times before but I  thought  I needed to write about it. Maybe to help someone else and a bit just for me. I have  a 9 year old with epilepsy she would have seizures , 100's a day.   Most people  only know about grand maul seizures as in you fall down and shake. That is a type but there is all a few more . She has two types myoclonic and absence.  The absence seizures are a stare off in space cant get her attention seizure.  The  myoclonic  seizures are very quick jerks of upper body.   We have been dealing with this since she was about 18 months,8 different medicines several combos,a surgery and still not under control.   We took the next step that we could Diet.

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So we began testing to see if her body could handle all the change that would ensue. We had many appointments doing blood work,talking with nutritionist and her neurologist.  We finally came to a decisions and a plan . We were going to start a modified Atkins diet for epilepsy different then Atkins you know. It is also part Ketogenic diet.  This diet consists of high fat, low carb and low protein. We also have to test her ketone levels twice a day and do blood work every 3 months. It is very monitored by her medical team  I have to keep track of everything everyday.  I  will explain how it works. We use carbs for energy  we need her body to use the fat and make ketones in her brain to stop seizures.  The diet is very complicated takes a long time to get used to and can cause attitude and tiredness and other more dangerous side effects witch is why it is so closely monitored.

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The diet is typically only used for 2 years to train your body then u can slowly go back to eating normal as your body can handle.  Now each person and case is different so  for us she is only allowed 20-30 carbs in a day. To put that in perspective do u know a 8oz class of orange juice has 48 carbs., Think about that for a moment.  So I bet you  think OK no bread or potatoes yep that's what i thought the list of no's is extremely long so I will just give a sample. No bread. no milk, no drinks really except water,almond mil unsweetened,and diet caffeine free pop. No cereal,no candy,no cake,no crackers, very limited fruit yes fruit. Fruit was my big what do you mean no fruit. Fruit has carbs because of the sugar.

 

So I make most of her food nut based with eggs and heavy whipping cream. She takes her food everywhere and is getting much better with being OK with this whole change it has been hard and very challenging on everyone but we are getting there together. yes we are seeing results we  need to add more fat and adjust a few things but we are seeing some positives so we will continue on this journey and see what it all can bring. for the ones that are a little curious I will post a  sample menu and some recipes later if any one wants to see. Thank you so much for reading this i know it is long. I will also gladly answer any questions you might have.




Sarah

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