Re: Insomnia? Hunger? PLease help!

[Guest guest]

Wow, reading your post was like looking in the mirror... We go

through the same thing every day. Kalob has traumatic brain injury,

and cannot communicate at all really. Kalob is on the keto diet and

a med called Felbatol because the diet alone wasn't enough. First,

when we weined the meds Kalob had alot of problems, he would just

whine and complain all day, I imagined it as his senses being

supressed for so long because of all of the medications and when the

med was taken away it was like a new born baby being exposed to all

of this stimulation can be overwhelming.

Since the seizures have come under control, after the med, Kalob has

started to eat, he's more active, which means he's burning more

calories. He too whines most of the day, the hard thing with a child

who cannot communicate is to figure out if their whining or if there

is something else, like just making noise that irritates us. Kalob

runs around saying eeee all day, but when he eats he calms down.

He too stays up all most of the night, we put him on something

called melatonin, it's an herbal med that the docs recommended. Just

a low dose to help him sleep at night, if needed they said that they

would put him on something to help him sleep all night, however we

declined because we want him on as little meds as possible.

Don't know if i've made any sense here. I know it's hard to have a

child and not know what it going on in their mind alot of the time.

I have heard that the diet can cause insomnia, unfortunately were on

a med that also has that as a side affect too so I don't know what

it can be... I wish you luck in finding some sleep...

[Guest guest]

Philbin,

You may want to recalculate the meals to have 3 meals and 2 snacks or 4

meals. Being off of meds can certainly change behaviours. My daughter's

behaviour was completely changed after starting the diet and again after

weaning the medications. Many kids get constipation and/or reflux when

starting the diet. Those can cause a lot of discomfort and severe pain.

Make sure that you have good vitamin and mineral supplements as the diet

is severely lacking. Many people stop the diet because it is a lot of

work and difficult to do. Others stick with it in spite of all the

problems because they find the reduced seizures and increased awareness

is worth it.

You are allowed a small amount of " free " lettuce each day and if seizure

control is good, then that is possible. We give some ground psyllium

husks to give bulk to BM's.

Good luck,

Bill

philbin108 wrote:

> My boy whose 7 has been on the diet for 6 weeks and has been seizure

> free for almost 3 weeks. So we love the diet...or do we? HE has CP

> and is unable to communicate very well. He is now off all meds and

> has been for about 2 1/2 weeks. The problem... it's 1 AM and he and I

> are up together again. Every night he is up making tons of noise. It

> goes on for hours. ALso, throughout the day he does the same thing

> now. SInce he cannot talk it is just loud and really obnoxious. At

> first we thought it was the meds being weaned. I just asked him if he

> was hungry and he emphatically got the answer across that he is. What

> do I do about it? He is now on 3 meals wihtout any snacks. THe thing

> is I don't know if some measely snack is going to fill him up from 7

> or 8 PM until morning anyway!!! His meals are pretty much puny, but

> from what I understand he is eating much more than most of these kids

> because he's underweight. ALso, he's a poor drinker and is allergic

> to tons of foods, one of which is milk. His diet has no milk in it.

> Please give me some tips if you can help. I feel so bad for him.

> It's great that he's off the meds and all, but if he's acting goofy

> anyway I cannot rationalize this diet.

> PS. I probably sound really negative considering the diet is working,

> but no sleep for 6 weeks can do that to you... HELP!

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a professional

keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

>

[Guest guest]

I know all about the no sleep routine. It has been a year and 2 months since

we've had a good night's sleep. Our neuro told us try Melatonin (over the

counter supplement found at any drug store). We've only been on it for 3 or 4

days now, but last night our 21 month old angel slept for 5 straight hours. It

has to be the Melatonin (and the grace of God).

The neuro told us to try and find it in capsule form, but we could only find it

in a tablet form.

Good Luck and Merry Christmas.

Jim Regitz

jim.regitz@...

Insomnia? Hunger? PLease help!

My boy whose 7 has been on the diet for 6 weeks and has been seizure

free for almost 3 weeks. So we love the diet...or do we? HE has CP

and is unable to communicate very well. He is now off all meds and

has been for about 2 1/2 weeks. The problem... it's 1 AM and he and I

are up together again. Every night he is up making tons of noise. It

goes on for hours. ALso, throughout the day he does the same thing

now. SInce he cannot talk it is just loud and really obnoxious. At

first we thought it was the meds being weaned. I just asked him if he

was hungry and he emphatically got the answer across that he is. What

do I do about it? He is now on 3 meals wihtout any snacks. THe thing

is I don't know if some measely snack is going to fill him up from 7

or 8 PM until morning anyway!!! His meals are pretty much puny, but

from what I understand he is eating much more than most of these kids

because he's underweight. ALso, he's a poor drinker and is allergic

to tons of foods, one of which is milk. His diet has no milk in it.

Please give me some tips if you can help. I feel so bad for him.

It's great that he's off the meds and all, but if he's acting goofy

anyway I cannot rationalize this diet.

PS. I probably sound really negative considering the diet is working,

but no sleep for 6 weeks can do that to you... HELP!

" The Ketogenic Diet....a realistic treatment option, NOT just a last resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional keto

team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe