stella's doc apt

[Guest guest]

Friday we had a visit with the epi and the dietician. I guess we

didn't think there would be any new answers, but were hoping. The doc

has no other suggestions for stella other than to try the VNS implant

so we are meeting w/ a neuro surgeon to talk about that in the next

couple weeks, then she'll probally go in for the surgery in a months

time.

We are weaning her off the diazepam, so in 2 weeks that will be gone,

then we'll take another 2 weeks to take her off the diamox, then about

a month to take her off the lamictal. I really want my daughter's

brain to have a break. She's been on some sort of medicine for over 4

1/2 years now, and each one brings a new seizure type, I don't think it

could get much worse.

The dietician said to increase the MCT oil to 8g per meal, which I

calculate separately than her other oil. Her BHB is lower than when

she was first put on the diet. With all the tonic clonic seizure she

was having prior to the diet she hardly ate and I was using an atkins

approach to feeding her, but not weighing anyting. What is the most

frustrating is the more the diet is fine tuned the more seizures she

has. Calories keep getting lowered and her seizures get worse. Her

ratio goes up and her seizures get worse. I just have no clue as to

what to do. I've said i'll give it 6months to hope for improvement.

Monday stella is going in to be fitted for a helmet, she has so many

drop seizures now it's frightening. Over 50 yesterday, fortunately she

was held for most of them so she didn't hurt her self, but they are so

powerful, when she goes back it's difficult to keep a hold of her

especially since she weighs 45lbs now.

Being a vegetarian do you think there is a difference w/o the animal

fats? Most of you out there are giving your kids meat/fish etc and

stella is mostly getting her fat from olive/flax/MCT and coconut oil.

The other thing which has slipped is her short term memory, she can not

remember anything anymore. Looking at letters, she'll repeat them

after me, but then when I ask her to do it on her own, she has no clue

and is getting really upset. She starts kingergarden this fall and she

is going to be so behind all the other children, she will be in a

special ed class though, but still.

Another question to those of you out there, are you using a 1gram scale

or a 1/10th gram scale, just how accurate are you weighing the food.

Our dietician sent us home w/ a 1gram scale, but it sounds like others

are using the 1/10th scale.

Sorry this was so long, I had to get it all off my chest.

amanda-mom to stella 5 1/2 years old, started keto diet May 10th 2004,

still waiting for her miracle. Weaning diazepam, on lamictal and

diamox and as needed diastat. Now considering the VNS