spilling ketones

June 23, 2004

Has anyone been on the diet with a child under the age of one? Hannah (almost 6

months) is still not spilling ketones and has been on the diet since 2 days old.

The nutritionists believe she will not spill until after she is a year old. My

neurologist thinks otherwise. In the mean time, she continues to have the

myoclonics like clockwork at 3am and when she wakes up from a nap. She also has

at least one tonic clonic a day lasting about 30-45 minutes total. I am still

waiting for her muscle biopsy. She remains undiagnosed yet therapeutically

responds as though she has pyruvate dehydrogenaise deficiency, thiamine

responsive. The cause for her continued seizure activity remains a mystery. Her

acidosis has basically diminished and she continues to slowly gain weight (she

now weighs about 13 pounds). She takes thiamine, CQ10, L-Carnitine,

Phenobarbital, and now keppra. After her muscle biopsy, our nutritionist has

recommended we travel to NY or Toronto for a second opinion as to her meta/mito

status. I have her in physical therapy and will start occupational therapy in

August. I just feel like early intervention is key and we are losing time to

" catch it early " for Hannah. I know I am doing all I can do for her right now,

but I feel like I am not doing enough. Any thoughts?

Thanks,

June 23, 2004

Hi , I'm so sorry that Hannah isn't getting into ketosis, I

totally know how frustrating that is. My daughter Kristan started on

the keto diet at 9 months of age and we were told that kids under one

have a tough time of getting into ketosis, but we went ahead with the

diet. We stopped all meds b/f starting the diet and her seizures

were down from 150-200 a day to 5-6 at the time of the diet. Ketones

were usually moderate and lately they have been low to trace. My

Kristan is a mystery, she is almost 19 months old and we started the

diet on August 19, 2003, and it's been almost two months and her

seizures have been down to 1-2 a day which is the best she has ever

done since starting the diet, but her ketones are all over the place,

mainly on the low side. WE have never found out the cause for

Kristan's seizures and looks like we never will, she has had every

test you can think of and everything comes back normal. I think her

4 month vaccination has something to do with it, but the doctor's say

no.

Our dietitian said they believe that Kristan isn't getting into high

ketosis b/c she was in a calorie deprived state (b/c she isn't that

active) and that she was clearing her ketones as fast as she is

producing them, so we are slowly raising calories to see if that

helps, so far so good. Could raising calories help with Hannah?

Check with your dietitian.

Hope this helps.

Satnam,mom to Kristan, 18 months

Keto kid since August 2003

> Has anyone been on the diet with a child under the age of one?

Hannah (almost 6 months) is still not spilling ketones and has been

on the diet since 2 days old. The nutritionists believe she will not

spill until after she is a year old. My neurologist thinks otherwise.

In the mean time, she continues to have the myoclonics like clockwork

at 3am and when she wakes up from a nap. She also has at least one

tonic clonic a day lasting about 30-45 minutes total. I am still

waiting for her muscle biopsy. She remains undiagnosed yet

therapeutically responds as though she has pyruvate dehydrogenaise

deficiency, thiamine responsive. The cause for her continued seizure

activity remains a mystery. Her acidosis has basically diminished

and she continues to slowly gain weight (she now weighs about 13

pounds). She takes thiamine, CQ10, L-Carnitine, Phenobarbital, and

now keppra. After her muscle biopsy, our nutritionist has recommended

we travel to NY or Toronto for a second opinion as to her meta/mito

status. I have her in physical therapy and will start occupational

therapy in August. I just feel like early intervention is key and we

are losing time to " catch it early " for Hannah. I know I am doing all

I can do for her right now, but I feel like I am not doing enough.

Any thoughts?

>

> Thanks,

>

June 23, 2004

I personally haven't BUT I talked to 's PCP about it because I know she

has a friend who's son is also on the diet and has been since he was 3 months

old. He is just over a year old now and was on a special formula until about 2

months ago when he started on small ammounts of real people food. He starte

dspilling ketones the first week of the diet. I asked my neuro about his opinion

(and granted it's not your kiddo and who knows how many miles away) BUT he also

says your child should be spilling ketones. That's 6 kids (1 friend and 5 of my

neuro's aquantance) who have spilled ketones before the age of one.

Ally

spilling ketones

Has anyone been on the diet with a child under the age of one? Hannah (almost

6 months) is still not spilling ketones and has been on the diet since 2 days

old. The nutritionists believe she will not spill until after she is a year old.

My neurologist thinks otherwise. In the mean time, she continues to have the