Still fine tuning

[Guest guest]

Hi,

We are still going crazy here. It has almost been 2 months and we

haven't gotten good results yet. I have decided to follow the book and

forget the dietitian. I really want this to work. Our dietitian

started us with too many calories, lots more proteins then the book

recommends as a high and our start up was not like the book recommended.

I switched his proteins to 1.5 per kilo. is 17 months old and

weighs 24 pounds 9 ounces, which is 35% on the growth chart. He is 32

3/4 inches long- which is 55% on the charts. He looks chubby. His

activity level is very small. He rolls and does push ups, and

occasionally stands in his walker. According to the book his cal per

kilo were to be 75% of 90 if his activity level is average. Our

dietitian started us at 875. We dropped to 775 after 3 weeks because he

gained 1.25 pounds. When we increased his ratio to 3.5 his seizures

doubled. We went back down to 3:1 with some relief. We have switched

him to 6 meals a day because of his refusal to eat and dropped another

100 calories.

Before we started the diet Nick was in ketosis because I added cream and

protein to his meals to help his weight loss. He was consuming 675

calories ( according to the dietitian after viewing a 3 day meal log).

He was having seizures 3 times a day.

It has been 2 days and we are seeing more positive behavior. He eats

his meals instead of spitting it out and whiny because he was force

fed. Plus, I have company and they say they can't believe the

difference in how responsive he is. I don't notice as much because I am

after perfection. :-} One of his meals is ice cream made with egg yolks

and cream. He loves it. It was taking me an hour to feed him each of

his 4 meals before the change. He now eats his food in 20 minutes and

seems to enjoy every bite. It is too early to tell if this is the

change we needed, but I am praying it is. We will find out when we

weigh him Thurs. if it is too few calories. We are back down to

seizures 5 times a day instead of 9 with the higher ratio.

We are going to do Hyperbaric oxygen in August.

Dianna