Re: Welcome Back, Gretchen!

[Guest guest]

We had the same problem about 3 weeks ago just prior to going away to

camp. I found with the lower ratio that the calorie calculations weren't

working. I cut back by 50 calories and after about 1 and a half weeks

the night time seizures slowly went away. I will write an update when I

have more time. You might try a high ratio meal prior to bed-time as

well as cutting calories. Seizures are much more common during sleep,

according to our neurologist. Watch for weight gain or loss. With the

increased day-time activity maybe more calories are needed. It is very

difficult to figure it all out.

Bill

langansmom wrote:

> Gretchen,

>

> I was wondering where you were. So glad you are back online and

> sooo glad to hear that things are working out for Ethan on the

> diet. It is hard enough on a 2 year old. I imagine it is really

> tough on an 11 year old! Bravo to him for being such a strong

> little guy! I hope the counseling helps deal with the episodes he

> is having. Please give him a hug for me!

>

> Langan is happier than she has ever been- when she is awake. She

> laughs and is so interactive. It is unbelieveable to us. Her

> strength is getting so much better by the day also. It is the

> nights that are impossible. As soon as she tries to go to sleep,

> all hell breaks loose. She wakes up screaming or shivering or

> having a seizure or all of the above throughout the night. I feel

> so sorry for her. She won't nap during the day now, no matter what

> we try. Can't say I blame her. I think she is just scared of sleep

> time. Somehow she still manages to have tons of energy and be so

> happy during the day, but we can't keep this up. It is what led us

> to finally try the trileptal, but as you read that didn't go so

> well. She was in the midst of an ear infection then so maybe we'll

> give it another try, but nights are bad enough right now without

> making them worse! We have no seizure activity at all during the

> day (knock on wood that we keep being able to say that) but the

> nights are just hell for her. So we'll see what the docs recommend

> on Monday. Any suggestions are more than welcome! This group has

> given me more great ideas than all of the specialists combined!

>

> Again, welcome back! We missed you!

>

> , mom to Langan, 2 yrs old and keto kid since 11/03; med free

> (except 3 days of trileptal) since 4/2/04, weaning from the diet due

> to metabolic acidosis but hanging on as long as we can!!

>

>

>

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