Re: Help! Carb levels

[Guest guest]

Hi , I feel for you, I've been down this road with my little

Kristan as have other parents. Kristan's problem has always been not

being able to get into high ketosis. Kristan was 9 months old when

she started the keto diet (now she is 20 months old) and was put on a

3.1:1 ratio and 400-450 kcal/day b/c she is not that active. When we

started the diet, we had also stopped meds and Kristan's seizures

were down to about 5-6 a day from over 150-200 a day. She's been on

the diet a full year and we have had many ups and downs and many

ratio changes. Fine tuning takes time as others will tell you and I

know it is hard to wait and see. We also have never found out why

Kristan is having seizures and I am certain now that we will never

know.

Has your dietitian thought of increasing calories b/f changing the

ratio? Kristan's dietitian consulted with a expert nutrition

researcher and they determined that the reason Kristan has never

gotten into high ketosis is b/c of her calorie deprived state and

that she is clearing her ketones as fast as she is producing them.

You are right, kids under one year have been known to get into

ketosis. We have also put Kristan on Carnitor which I don't think is

the same as L-Carnitine, but that has helped a little to raise her

ketones. Has your dietitian thought of trying Carnitor? Also, have

you thought of changing your keto team if you are not getting the

support you need? We changed keto teams and have mixed feelings

about our keto team, but they are better than the first dietitian we

had.

Kristan's currently on a 4.5:1 ratio which we started last week and

we are hoping that it will raise her ketones, she is only on 735

kcal/day and I don't have the exact protein, carb levels, but her

dietitian has always had very little carb to work with, in fact, I

think it's even lower than the carbs that Hannah is on. No one has

ever discussed the carb levels with us, only that they have very

little to work with.

Hang in there, I know it's hard, I hope this helps and I hope someone

else on this site can help.

Satnam, mom to Kristan, 20 months

Keto kid since August 2003, exactly one year ago today (Aug. 19)

> I feel like I am close to my breaking point with the doctors.

Hannah is now 7 months old and has been officially on the ketogenic

diet for 12 days. She is currently at a 4:1 ratio and only spilling

trace ketones. Sometimes, in the evening, she may go up to

small/moderate, but this is rare. I say " officially " because since

birth, Hannah has basically been on a 2:1 ratio due to her inability

to metabolize carbohydrates.

>

> Hannah was born Jan 9th and stayed in NICU until February 11. They

originally thought she had PDh but the skin biopsy came back negative

and they are now thinking of ruling that out, but of course they are

unsure. She has been hospitalized a number of times and we are

currently waiting for additional results from her muscle biopsy. This

is what we know so far from the muscle biopsy:

> Here's what we have so far: no mutations in the mitochondrial

DNA were found. This does not rule out a mitochondrial disorder

because they can also be caused by nuclear DNA mutations. The assay

of mitochondrial enzymes (oxidative phosphorylation) did not point to

a specific disorder either. We are still awaiting the

immunohistochemistry and electron microscopy, where the structure of

the mitochondria and some of its proteins can be examined

>

> When Hannah had her muscle biopsy, she had an adverse reaction to

the anesthesia. In post op, she had to have an emergency intubation

tube and was hospitalized overnight in ICU. They said her body's

reaction to the anesthesia was indicative of a mito disease.

> I have been patient waiting for answers, but my patience is wearing

thin. I understand we may never get an answer, but today, that just

isn't good enough for me. I spoke with Hannah's dietician this

morning and suggested her ratio be changed to 4.25-4.5:1 instead of

4:1. My rational is that Hannah's body is used to metabolizing a 2:1

ratio and may need a higher ratio in order to go into ketosis. My

dietician is hesitant. The dietician says Hannah's brain needs

carbohydrates in order to grow. Since Hannah's body reacts to carbs,

this is a problem. It appears Hannah's lactic acid levels increase to

a point of dangerous acidosis when she has carbs. The dietician

thinks Hannah is too young to go into ketosis.

>

> I know there are some kiddos out there on a higher ratio, what have

your doctor's said about the carb issues? Hannah is currently at 4:1,

10.95g protein, 2.19g carbohydrates. She takes 4cc L-Carnitine, a

multivitamin supplement, 30mg CQ10 and 700mg thiamine.

>

> Please help,

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