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Old 03-23-2015, 07:04 PM   #11
nnjgolden
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Re: Anyone know about carnitine deficiency?

Being a bit nosey, because my daughter does have cyclic vomiting syndrome. She, too, is being treated by a geneticist. How did they rule out the CVS? Sounds very classic to me, with episodes every 5-8 weeks. My DD takes carnitine supplements 2 x's per day. My understanding is if there is a lot of vomiting, your carnitine levels will be low. If he is already low, that might be a horse of a different color.

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Old 03-25-2015, 03:04 PM   #12
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Re: Anyone know about carnitine deficiency?

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Originally Posted by nnjgolden View Post
Being a bit nosey, because my daughter does have cyclic vomiting syndrome. She, too, is being treated by a geneticist. How did they rule out the CVS? Sounds very classic to me, with episodes every 5-8 weeks. My DD takes carnitine supplements 2 x's per day. My understanding is if there is a lot of vomiting, your carnitine levels will be low. If he is already low, that might be a horse of a different color.
The pediatric GI said he has diagnosed cyclic vomiting in many children, always using the same set of labs that are drawn during an episode. He said that my son's labs were the only ones he's had come back abnormal. During an episode, he had double the normal max plasma lactate (but not so high it would indicate MELAS), and his urine had ketones and protein that were both over the limit of detection. His free and total carnitine was also low during the episode. When we've checked again (outside an episode) all those same labs are normal except the carnitine is still low.

Also, CVS doesn't explain his poor weight gain (he's 24 pounds right now) or food aversion. Last night I had to force feed him, literally holding him down, the first couple bites of food before he would agree to eat it. Once I get a couple bites in him he will stop fighting, but he still won't feed himself. We have to spoon feed him everything except french fries and apple slices.
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