Thursday, March 11, 2010

4 Grams

Samantha is on a crazy high-fat diet to control her seizures; the ketogenic diet. I have heard amazing stories of recovery on this diet. I'm a fan but I've always been a little skeptical when it comes to Samantha.

- She's still on seizure meds.

- We do see seizures every once in a while

- It's very hard on her body

Samantha is tube fed so we control her diet and what she eats. The ketogenic regiment requires that we measure the ingredients of her diet to the
gram. She gets 126 grams of hard boiled egg. 56 grams of juice. 71 grams of olive oil. We even measure the carbs in her vitamins.

I've often thought what would happen if we deviated....just a little bit. I'll read posts about a kiddo who ate
cookie crumbs his sister left after a snack and then had a seizure because he went over his carb count.

Really? I would think, cookie crumbs?

Two weeks ago Samantha went in for blood work. The tests couldn't be completed because her blood had hemolized. Her doctor was also concerned because her blood was lipemic...meaning their was too much fat in her blood to get an accurate reading.

So, all things considered, we reduced the amount of fat she was getting her diet. Bear in mind, the seizure control is based on the fat. But the reduction wasn't huge, when everything was calculated, we took 10 grams of olive oil out of her daily intake.

Two days later, Samantha had cluster seizures. Five days later, Samantha had even more seizures. On Tuesday, we had to use Valium to control her clusters. She had seizures throughout the day yesterday and we had to use Valium again.

We clearly lost the seizure control we had.

We retested her yesterday and got a good reading on her blood work. The nurse called this morning to tell me her lipid count was still high but could increase her diet to the ratio it was before.

I've never been so happy to give my daughter a stick of butter.

Well, okay, it really wasn't a stick of butter but I did put 4 grams of olive oil in her formula this morning to bring the ratio back up....that's right four grams. We'll put the missing six in her lunch and dinner to bring her back up to the ten we took out last week.

I haven't seen a seizure yet (knock on wood)....usually by this time we've seen four or five.

Four grams of olive oil....

Maybe there is something to this diet.


Wendy said...

that is amazing! and how they would have figured that all out is even more amazing. cheers to fat! when do you even get to say THAT?

Deana said...

Have you seen the movie, First Do No Harm?

We've kicked around the idea of keto diet for Max, but just don't think it would be best with his metabolic diet needing to be so regulated too.

I hope Samantha's seizures stay away!

Amanda said...

Heather...I'm glad you have adjusted and re-adjusted. The good thing - no reason to be too sketchy about weather or not it is working. I'm sorry we didn't get to chat at Tuesday's meeting about this.

Amy Simindinger said...

Hi, I came across your blog and wanted to comment on your post. I am the principal of a K-8 non public school for children with various special needs. I had a student who was on the ketogenic diet, and his parents saw amazing things. It was hard to see him eat things we wouldn't normally consider "eatable" by themselves. One day he spilled some of his lunch and I had to give him a couple tablespoons of butter to eat to make up for the spilled fat; not too appetizing for us, but very necessary for him. The seizure control they saw was amazing. They have sinced started him on a fruit and veggie supplement, since there is none of that in the diet, and his cognitive abilities have soared. Good luck on the diet. I hope it brings Samantha relieve from her seizures.