Hi All - our story and the Keto diet

Just want to introduce our story in a nutshell.

Our daughter Maddie was diagnosed with a sodium channel gene mutation (SMEI/B) at 5 months old, which can lead to Dravet syndrome.  We started 2 meds within 6 months but they weren't effective at controlling her seizures.  At a year old, our neuro offered us the Ketogenic diet.  I jumped at it!  Maddie was (and is @ 20 months) still hitting her milestones.  We have heard with Dravet that the prolonged seizures cause these kids development to decline around the age of 2 yrs, so I wanted to try to avoid this at all costs. 

Since we started the Keto diet, we have had a 90% decrease in the length of her seizures... going from 30 min + to 1-3 min.  Toddler years being stressful, she has had more szs in the past few months because of cold/sickness and teething, but her neuro is pleased as we have the length of szs figured out.  We're just lucky they are a minute rather than 30 min!

I would highly encourage anyone to try this diet out.  In terms of weight gain, she has actually gained a little more than she should have because they upped her ratio and calories, and I'm told to give it time she'll grow into it.  Our dietician says its better to have a chubby child than one that won't stop seizing.

I feel like I have some CONTROL over this diagnosis as well, like I am doing something instead of dispensing a pill(s).  I never begrudge the time or effort that it takes, as I see how well she is doing and we aren't at the hospital every month.  We have recently started to wean her off the Keppra and hopefully will do the same with the Topomax.  We have heard that sometimes the drugs and the diet don't always interact well together.  When we upped her Keppra, she did have more szs, so we have been backing them off slowly and are having longer intervals without any seizure activity.  We are hoping to have greater control when she is med free.

In terms of food, it also makes me feel good that she doesn't get anything processed - everything is fresh without sugars, additives etc.  I've learned its OK for her to eat the same few meals as kids don't always need/want variety.  It gets easier - its just a HUGE learning curve.  My biggest challenge right now is teaching her to feed herself - she needs everything we give her, so that's hard... and she is exercising her need to assert herself and sometimes mealtimes can tax my patience.  That being said, the main thing is we get her fats into her and hopefully the proteins.  I know lots of distraction techniques! Mommy always wins!

Please don't hesitate to pick my brain at any time - you are welcome to any information that I can provide.  I am so happy and I plan on keeping Maddie on this diet until she's 20 years if I need to!

Take care!! Melissa