Susan’s Story

[Note: This experience is wildly outside the realm of the Modified Atkins Diet (MAD) for Seizures, as this parent found the opposite to be the solution – namely carb loading. However, this alternate experience demonstrates that each person is different, and a parent is always the best advocate!]

My daughter is 8 and started having seizures at the age of 5. Our neurologist thought that she may have had a glucose transport deficiency. She would have seizures in the morning, after a lot of exercise, and if she hadn’t had a snack before bed. The glucose in her cerebrospinal fluid (CSF) was lower than it should be at 2.6 (it should be between 2.8 and 4.4). She had the genetic test for the glucose transport deficiency and it came back negative.

I started feeding her every 2 to 3 hours (lots of carbs) and giving her cornstarch before bed to keep her glucose levels up over night. She is now seizure free unless she over exerts herself (more than 2 hours of exercise). We never did the MAD or Ketogenic Diet. I wonder how many other children would respond to the carb loading/frequent feeding/cornstarch?

Maybe there are a lot of kids with low CSF glucose and they don’t know it. The premise behind the MAD and the Ketogenic Diet is to get energy to the brain using an alternate pathway (ketones) [Note: There are several theories as to why the MAD works. A couple are discussed here]. We were lucky we had success and I would have tried the MAD next if what we did hadn’t have worked.

My daughter is also on a gluten, dairy and soy free diet, as am I. I tried reintroducing soy and dairy at one point and she had trouble swallowing and chewing. We haven’t had a problem since the foods have been permanently eliminated. She had occipital lobe seizures and was having 5 to 10 a day. We never medicated her. She would not lose consciousness with the seizures. She also had problems with balance and left-sided weakness.

Today, everything seems to have corrected itself. She’s a very happy, healthy, little girl who does well in school and has lots of friends.

I hope this may help someone.

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