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Sherri

I have a 9 year old daughter who has been on the keto diet now for 6 years

(successfully..med free!!)

She has developmental delays . She has a mitchondrial disorder that is

helped by the keto diet, so she uses the diet for 2 reasons (and thus, she

will always remain on the diet)

Initially my daughter was oral and G tube..now she is just g tube. Once

commencing the diet, she began to slowly develop, and despite the prognosis

of her disorder, she in certainly not loosing skillls!

What problems are you experiencing?

I am happy to chat and help if I can

ne, Mum to Gaby (9) PDH, in Australia

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My daughter gets fluids by g-tube and solids by mouth. Since she is off

of meds now, she can eat by mouth much better. She has a mickey button.

With the 4:1 and higher ratio, the mickey button was only lasting 2 or 3

months instead of the normal 6 to 9 months. We still had all the

problems of reflux, constipation and vomiting. But that had nothing to

do with the g-tube.

Bill

shlytaft@... wrote:

> Our daughter (Caitie) is 7 years old and is developmentally delayed also.

> Caitie has been on the diet for 6 months now. She is so much more alert than

> before. And stays awake for much of the day. Still with all of that she is

still

> very delayed. Caitie was not talk,walk the eat my mouth. But is very very loud

> with all kinds of sounds. Caitie also look for us more now. I also hope we

> will see more developmentally from her. Her seizures are better and we are

lower

> one of her med's.Still on klonopin,keppra,zonogran and going off of topamax.

>

> I was also curious about how many Keto kid here are g-tube feed?? And is

> anyone having any problems.

>

> Sherri mom to Caitie 4/04 4:1 ratio

>

>

>

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.

We experienced the same thing with when he went on the aeds at

age 2. He had a big cognitive decline first and along with that came social

declines. I think it was from the seizures and the drugs. Not just the

drugs. After getting him on the keto diet and fine tuned which was about 18

mos

later, his skills came back and advanced but to be honest, he has never has

become completely normal. He is still mildy delayed and has learning

disabilities. Socially, he has gotten better but it takes take and baby steps.

Alot of times, sensory overload can cause them to be afraid of the otehr

kids and if they are moving at such a fast pace and can slow them down. It is

going to take time to see

what effects the seizures have had but I would encourgage you to take baby

steps in getting him back into the social seen. First, have him play with one

child, even a cousin if you have one, and then gradually move into the group

setting. Reading books and teaching them appropraite responses for certain

situations helps. We have done a progrma called Verbal Behavior which is a

verbal ABA program. It has helped so much and I wish we had started early.

Just remember that it takes time and only one area makes progress at a time.

Lots of luck

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