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Old 03-02-2015, 12:46 PM   #1
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Anyone know about carnitine deficiency?

Can low carnitine cause vomiting? If you did a carnitine supplement and then stopped, did it cause vomiting?

Brief history: 3yo with chronic food aversion, <1% (not on weight charts), and episodic vomiting (every 5-8 weeks) with each episode lasting about 5 hours. GI specialist ruled out diabetes and cyclic vomiting syndrome. He has consistently low free and total carnitine, but normal acyl-carnitine.

Current situation: We've been doing levo-carnitine supplement for 8 weeks, but we ran out on Friday and forgot to refill. Sunday afternoon he woke from his nap and started vomiting. We took him to the ER (per geneticist's instructions) and he had a normal blood sugar (103, I'm sort of annoyed they even took it because I've checked it many times and it's never been an issue, and it's the one poke he really really HATES to get. I'm also annoyed that I asked for them to check ketones in his urine and I don't think they did, even though that's an issue we've had before even with a normal blood sugar. Why don't ER people listen!?). He vomited after oral zofran, so ended up with IV zofran and dextrose. We got home at midnight, fed him a little, and put him to bed. He seemed fine. This morning he refused breakfast, and now he's back to food aversion and crying that his tummy hurts.

- This is the first time an episode resolved but didn't. After a vomiting spell he's always fine the next day. The fact that he's still nauseated today is unusual.

- Is it a coincidence that he developed a vomiting episode 3 days after running out of the carnitine? The ER doc spoke to our geneticist and she said she didn't know if that could be the cause or not.

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Old 03-02-2015, 01:01 PM   #2
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Re: Anyone know about carnitine deficiency?

Oh god. I just looked at this forum and I'm like a freaking spammer.

sorry.
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Old 03-02-2015, 01:19 PM   #3
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Re: Anyone know about carnitine deficiency?

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Oh god. I just looked at this forum and I'm like a freaking spammer.

sorry.
I have no clue, but I will bump for you. You are not spammy. You are advocating for your son!
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Old 03-02-2015, 01:53 PM   #4
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Re: Anyone know about carnitine deficiency?

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Oh god. I just looked at this forum and I'm like a freaking spammer.

sorry.

Nah, just very slow. I still peak in from time to time but I have moved over the adult disability forums now that my son is a preteen. The Mommies of Miracles Facebook group was very active last time I looked so you may get more nibbles over there. I personally have zero knowledge of this subject.
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Old 03-02-2015, 03:20 PM   #5
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Re: Anyone know about carnitine deficiency?

Hi, I am sorry, I don't have any magic answers for you. I haven't followed all of your posts here but I had one thought.

It seems like you are chasing down all kinds of medical problems for him. While it certainly could be one of those, I hope, hope, HOPE for your sake it isn't! Have you considered getting a referral to a physical therapist and/or occupational therapist who specializes in feeding disorders? If it could be as simple as working with someone to help teach him how to eat, that would be a huge relief for you, I am sure. Also, since you mentioned he screams even with food just on his plate, maybe even if it IS a medical issue, they would have ideas for you to help so that he at least eats the things that are okay for him.

I don't think you are a bad mom, I think you are a mom looking for answers to help your son. I really don't have any specific knowledge of what is wrong with your son, but I do know some kids that have been helped by PT/OT feeding specialists, and I know a few OT feeding specialists, so the idea came to my mind. From the brief description I have, your son's story sounds similar to another boy I know who had a feeding issue.
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Old 03-03-2015, 06:35 AM   #6
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Re: Anyone know about carnitine deficiency?

Have they looked into delayed gastric emptying? Does he show any signs of that?
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Old 03-03-2015, 09:09 AM   #7
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Re: Anyone know about carnitine deficiency?

Thanks so much ladies!

We've talked to the geneticist about a feeding clinic, and she said that's usually something kids with additional cognitive or reflex issues need. Our son is right on track for speech and motor skills, he just doesn't like to eat. He can eat when he feels well and wants to eat.

We did do an upper gi x-ray that watched his stomach empty into his intestine. It was normal.

He seems way better today since giving him carnitine last night. No one can tell me if that's a coincidence or not.
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Old 03-03-2015, 12:48 PM   #8
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Re: Anyone know about carnitine deficiency?

Aw, bummer, I was so hopeful that it might help you.

In that case, I hope he continues to do well with the carnitine. It sounds like that has at least had a little improvement.

I am sure you can use Google as well as me, but it suggests that carnitine can reduce vomiting in certain cases. So it might not be so much that a lack of carnitine caused vomiting, as that a lack of carnitine allowed the vomiting to happen. Make sense? Sorry I can't help more
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Old 03-19-2015, 10:41 AM   #9
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Re: Anyone know about carnitine deficiency?

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Thanks so much ladies!

We've talked to the geneticist about a feeding clinic, and she said that's usually something kids with additional cognitive or reflex issues need. Our son is right on track for speech and motor skills, he just doesn't like to eat. He can eat when he feels well and wants to eat.

We did do an upper gi x-ray that watched his stomach empty into his intestine. It was normal.

He seems way better today since giving him carnitine last night. No one can tell me if that's a coincidence or not.

Did they do the emptying scan when he was having an episode? If not I wouldn't trust the results. I finally got GI to take ds's varying motility seriously when it got bad enough for a hospitalization. At that point he Rx'ed an emergency medication protocol to avoid periodic gastroparesis. I would give Reglan (a fast acting gut motility med) to stave off gut paralysis (which would result in an unavoidable hospitalization). We no longer need the emergency protocol due to a surgery last summer but it was a god send while it was necessary.
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Old 03-20-2015, 07:29 AM   #10
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Re: Anyone know about carnitine deficiency?

So I just realized it wasn't an emptying scan, it was only duodenum because they were looking for malrotation. My sister has gastroparesis though, so maybe I should ask about that. Thanks!
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