Re: a couple of ?'s about carnitine supplement

November 29, 2004

Grace has never had any negative side effects from Carnitor (thankfully because she is very deficient.) She does have some problems with no appetite, at times. Although she does have a g tube we do not provide nutrition through it unless she is ill, or having regression. Currently we are giving her Periactin to stimulate her appetite (we also use it for migranes and helping her sleep.) For her it really seems to help, but she does take quite a bit for a two year old. It is common for kiddo's this age range to not eat regularly, unfortunatly with Mito they just don't have the option of doing this.

Oh yeah we also give her adult Ensure when she does not eat well. They work well because she thinks they are just chocolate milk.

Best wishes

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November 30, 2004

Hi Ann:

My daughter gains weight slowly. She is 6 years old and weighs 36 lbs.

We are still on carnitor and she hasn't had any reaction to it. Some

times we get a fishy smell during the summer months; but that is it.

One thing you may want to ask your doctor about is adding polycose to

your son's liquids. It is a powder that we mixed in to Leah's milk, and

also her food. But she takes it better in her rice milk than she ever

did with her food. It added calories without the fat. And may be you

might want to meet with a dietician who can help you how to get more

calories in your food. If fat isn't too big of an issue you can always

add powdered milk to things. What foods will your son eat? Can you

feed several meals (even though this ties you up more) a day rather than

three so called normal meals?

Good luck.

Nerenhausen

mom to Leah

ann wrote:

>jacob started Levocarn 10% oarl soulution like a month ago. then we

>had to stop it due to tummy crapping and we havent started it again.

>and another reason we stopped it cuz of his eatting/fluid decreaseing.

>

>he weighs 18lbs 12oz's and he is 19 months old.

>

>here are my ?'s..

>

>what type of reactions have you of your loved ones had with the

>carnitine supplement?

>

>has your food/fluid intake decreased due to the carnitine?

>

>what did your dr's do to help with the reactions/ decrease of

>food/fluid intake?

>

>dose it seem to increase your chance's of becomeing ill?

>

>please help i am stuck.. cuz we are trying to get jacob to eat and he

>just refuse's to eat some things and he needs more cal's to gain

>weight..

>

>thanks for the help in advance.

>

>mommy to

>- 4/18/03- cerabellum problem, possiable mito disorder,

>carnitine deficency, development delays, faliure to thrive, Ebstines

>Anmoaly, MVP, ASD(heart related), mild kidney problems.

>Hunter- 12/18/01- development delays

>

>Please contact mito-owner with any problems or questions.

>

December 1, 2004

,

My son, who is 6, has been on Carnitor for over a year now, and has

had no side effects. I'm sorry to hear that is. I hope you can

find something to help him.

I noticed that in your sig line you say that has ASD. May I

ask if he's had it repaired yet, or can you describe his to me? My

son has it also, which we didn't find until one month ago! I kept

pushing and pushing the doctors to give him an echo, and when they

finally did, lo and behold! We have our first cardiology appt on Dec

16th, and he'll have an EKG done that day, then hopefully we'll find

out the date for his open heart surgery. They said his ASD with an

AV canal defect is about 4.5mm, with mild mitrovalve regurgitation.

People have also told us that once our son has his surgery, that he

may start to really grow and gain weight and his leg muscles might

not be so tight, etc..Basically we'll have a whole new child. I

don't know if that's true or not, but it's nice to think at least a

couple of his problems might straighten out once this ASD is

repaired.

Thanks for any advice you can give me.

e

December 1, 2004