New member: inconsistant ketones and other ?s

Posted July 17, 2004 · July 17, 2004

Hi! I'm new to the group.

My daughter, Daphne (9 months old with infantile spasms - dx at 3 months -

tube fed since 5 months old), was started on the ketogenic diet on June 22nd.

After over three weeks, though, her ketones are all over the place. We've

checked her meds, schedule etc. and can't figure it out. In the morning to

early afternoon she's usually small - moderate, then she gets large ketones in

the evening. She's fed the same formula, and is now at a 3.5:1 ratio (started

at a 3:1 ratio and they didn't do a fasting period).

I was just wondering if anyone else had a hard time getting ketones to be

consistant. She's having one to three seizures a day now, which is improved,

but they are lasting longer than they used to.

By the way, we also started out feeding her every four hours around the clock,

but then tried taking out the middle of the night feed, just in case being fed

while being totally inactive made ketones lower.

Another question is she started on Depakote sprinkles a few days ago (was

on Depakene liquid, switched to tablets after diet, then switched to sprinkles a

few days ago b/c they're lower in carbs) and it seems to really upset her

stomach. I finally switched her back to tabs today after she vomited and had

diarreah immediately after getting her Depakote. She had diarreah ever

since starting the sprinkles, and I'd find the little granules in her poo (sorry

if

too graphic) so I don't think she was absorbing it much.

The Depakote tabs have 35 mg of carbs, which she gets 4 times a day, and

she's also getting Phenobarb, which has 35 mg of carbs, twice a day. Has

anyone had trouble with the Depakote sprinkles? And do you think the carbs

in her meds make a difference... even though they're given at all times of the

day and her ketones are only low early on?

Finally, she seems to have lost a lot of tone since she started the diet. I

don't

know if this is related to her seizures lasting longer, now, or if it's the diet

itself.

Any similar experiences????

So sorry this is so long... I obviously have lots of questions. Even if only

one

of the things I've mentioned sounds familiar to you, I'd really appreciate

hearing your experiences!!

Thanks!

(Mom to Daphne -- Infantile Spasms, dx at 3 months, now 9 months old.

Currently cryptogenic)

Posted July 18, 2004 · July 18, 2004

Hi ,

I'm new to the group too. My 4yr old son with Lennox-Gastaut like

syndrome started the diet last month. Good for you putting your wee

one on the diet that took a lot of courage. I get incnsistent

ketone readings too. My keto-coaches said this is absolutely to be

expected and suggested to me that I don't even bother reading them

in the morning when they are normally light for most kids. Isaac

does exactly the same thing as Daphne. It says the same thing in

Dr. Freeman's book " The Epiepsy Diet Treatment " that ketones are

usually lower in the morning and may vary through the day. The

variation is of no concern if not accompanied by seizures. Of

course Daphne is having seizures but the ketone variation may not be

the culprit. Isaac also is on Depakote. He had a lot of gastro

problems when he started, nausea, vommitting and diarrhea. We

persisted because it was a good drug for him seizure wise and all

the symptoms (except increased appetite) eventually went away. I

can appreciate that tolerating these symptoms in a baby would be a

lot more difficult! As for the loss of tone? I'd be bothered by

that too. Fatigue and lethargy are generally not side effects of

the diet. Usually the opposite is seen -- more energy and strentgh.

Good luck, I'll thinking about you both and look forwrd to hearing

how you sort things out.

Kathleen

> Hi! I'm new to the group.

>

> My daughter, Daphne (9 months old with infantile spasms - dx at 3

months -

> tube fed since 5 months old), was started on the ketogenic diet on

June 22nd.

> After over three weeks, though, her ketones are all over the

place. We've

> checked her meds, schedule etc. and can't figure it out. In the

morning to

> early afternoon she's usually small - moderate, then she gets

large ketones in

> the evening. She's fed the same formula, and is now at a 3.5:1

ratio (started

> at a 3:1 ratio and they didn't do a fasting period).

>

> I was just wondering if anyone else had a hard time getting

ketones to be

> consistant. She's having one to three seizures a day now, which

is improved,

> but they are lasting longer than they used to.

>

> By the way, we also started out feeding her every four hours

around the clock,

> but then tried taking out the middle of the night feed, just in

case being fed

> while being totally inactive made ketones lower.

>

> Another question is she started on Depakote sprinkles a few days

ago (was

> on Depakene liquid, switched to tablets after diet, then switched

to sprinkles a

> few days ago b/c they're lower in carbs) and it seems to really

upset her

> stomach. I finally switched her back to tabs today after she

vomited and had

> diarreah immediately after getting her Depakote. She had diarreah

ever

> since starting the sprinkles, and I'd find the little granules in

her poo (sorry if

> too graphic) so I don't think she was absorbing it much.

>

> The Depakote tabs have 35 mg of carbs, which she gets 4 times a

day, and

> she's also getting Phenobarb, which has 35 mg of carbs, twice a

day. Has

> anyone had trouble with the Depakote sprinkles? And do you think

the carbs

> in her meds make a difference... even though they're given at all

times of the

> day and her ketones are only low early on?

>

> Finally, she seems to have lost a lot of tone since she started

the diet. I don't

> know if this is related to her seizures lasting longer, now, or if

it's the diet itself.

> Any similar experiences????

>

> So sorry this is so long... I obviously have lots of questions.

Even if only one

> of the things I've mentioned sounds familiar to you, I'd really

appreciate

> hearing your experiences!!

>

> Thanks!

>

> (Mom to Daphne -- Infantile Spasms, dx at 3 months, now 9

months old.

> Currently cryptogenic)

Posted July 18, 2004 · July 18, 2004