Anyone supplementing with carnitine?

[Ms. Riding Hood]

I've just been reading about nutritional supplements that might be helpful w/AHDH-I and this came up and sounded promising. Does anyone here have any experience with it?

[sbgrace]

My son takes carnitine for a metabolic (mitochondrial) issue. He was extremely carnitine deficient--very low plasma levels. His levels did go normal (even high) with supplementation. We saw huge cognitive (and physical) improvement in him but he was very sick when he started. I didn't see any attention improvement in him (he's also ADHD-I) and he's on an extremely high dose. If you're seeing low tone, fatigue, other symptoms of carnitine deficiency/mitochondrial issues I'd certainly try it.

 

Beyond that it's safe and certainly won't hurt to try. (edited to add: I read up and I see research support. Based on what I read I'd try it and see if it helps. Also, my son is on L-carnitine and a brief look makes me think acetyl-carnitine is being used possibly?)

 

Edited to add again: When we get too high in fat with my son (he can't metabolize fat) I do possibly see increased attention problems. He's foggy for sure--that's what I meant by cognitive changes. Maybe for him (his body can't metabolize fat at all) the carnitine just isn't enough to correct that at a level that will noticeably decrease his (severe) attention issues. That might not be true in your child. I'd love to know if you see improvement if you do try it.

Edited May 9, 2010 by sbgrace

[Ottakee]

We use it as well for mitochondrial issues. We have a RX for 660mg 3 times a day for my girls (both about 90 pounds).

[Laurie4b]

My ds has low tone and ADHD. Are you saying that these supplements help with that? And did you dr. diagnose the low carnitine and prescribe the supplements?

[sbgrace]

My ds has low tone and ADHD. Are you saying that these supplements help with that? And did you dr. diagnose the low carnitine and prescribe the supplements?

 

Well, low tone is often caused by metabolic stuff (though unless a child is declining and/or shows other symptoms I would not go down that trail). The most common metabolic conditions (still rare in the whole scheme of life) that cause low tone have to do with fat metabolism and carnitine helps with fat metabolism. For us the biggest physical change was in my son's energy/fatigue level.

 

I remember reading somewhere that ADHD-I might have mitochondrial origins in some kids. I wouldn't be surprised (true in other things like autism where they find mito signs in testing in 25% give or take). OCD is sometimes connected to mito too. So ADHD link (in some) wouldn't surprise me at all. In those kids carnitine is going to be helpful at some level.

 

Plasma carnitine is a blood test/blood level. Any doctor can order it though they will likely have to look up the code as it's not a common test.

 

FWIW, the most common metabolic conditions last time I checked (Mitochondrial Disorder and CPTII) involve carnitine. So I wish there was more awareness on this matter. When a child or adult presents with fatigue for example I'd like to see carnitine and coq10 tested along with anemia/b12/thyroid. it should be routine imo. :tongue_smilie: Never mind. I'm going off topic!

[Laurie4b]

Sorry if you don't mind another question--how are mitochondrial problems tested for? is that the cartinine test or something else?

[sbgrace]

In I'm happy to give information. This is information I put together on another board about signs of mitochondrial/metabolic issues. http://www.mothering.com/discussions/showthread.php?t=734501 The mitochondrial specific information is in the middle of my post. See if it fits. Even among those who share the same DNA mutation mito can (and does) present very different and one might be incredibly affected and another seemingly not at all or very mildly. Mito is very variable both in presentation and outcomes/progression.

 

Formal mitochondrial testing is really complex and there are limited experts to see because of the complexity. Awareness is still spotty too even though this is more common than the metabolic conditions everyone knows. Carnitine is one of the initial tests. http://www.umdf.org/site/c.otJVJ7MMIqE/b.5692885/k.E71C/Getting_a_Diagnosis.htm The ones listed on this page under metabolic screening in blood and urine are the initial labs a metabolic neuro/geneticist/etc. who knows mito would run on a child or adult who appears to have symptoms. Many would run coq10 as well. However, there are few doctors who know enough about mito so most people have to travel to see someone unless they are lucky w/location. Further, a regular doctor could order the labs if they were willing but wouldn't know how to interpret. Metabolics is very complicated in general. Example: a doctor finally ran a really basic metabolic lab that came up abnormal but no doctor he spoke with (at our Children's Hospital...knowledgeable experts) could figure out what it might mean beyond something is wrong with him metabolically. I was put on a wait list of six months to consult w/metabolics. I figured out on my own it might mean mito and went to Cleveland with an, at that time, extremely sick child. Beyond that mitochondrial is complicated and invasive right now to diagnose even with the experts in the field.

 

If I had it to do over this is what I would do with my son. I would find a doctor who would run a metametrix comprehensive urine test. It will often pick up mitochondrial and other fat metabolism markers. If I got them I would treat according to umdf.org guidelines as if my child had mito. I would probably go ahead and get carnitine checked and coq10 before I started supplementing in case I needed to show that information to someone in the future or if I needed to track response. If my child was sicker than my son ended up being (after we corrected carnitine levels) I would consider going to one of the field experts for complete formal testing and diagnosis. But for mild mitochondrial issues that don't appear to be life threatening I would treat as if without the medical diagnosis following us (and the bills for testing and the invasive nature of it; I've been told that at some point in the future testing will very likely be a blood test that's not invasive or complicated like dx. is now). Most mito doctors use coq10 by tischon corporation sold by epic4health exclusively.

 

 

My son was extremely sick and declining daily by the time we figured this out. But he is doing well now. I would call him "mildishly" affected at this point. I don't know how it will play out in the future because he was not mild as an infant/toddler/preschooler. In contrast, I have always been lowish tone and that's all (and not even aware of that until I was aware of what that meant because of my son's low tone). I got sick soon after my son was diagnosed--so about age 36. My doctors couldn't figure it out. My carnitine was normal so I felt it wasn't mito since Andrew had been so low in carnitine. My son's geneticist at a regular six month appointment asked me if something was wrong with me. I told him how fatigued I was and the other symptoms I was having. The geneticist told me if I tested he was certain I would have low coq10 and that he felt I had the same condition as my son (hence the low coq10). And my coq10 was extremely low. We tested my seemingly healthy son (not low tone)--carnitine, coq10, metametrix urine. He had markers in that metametrix and normal-like (suboptimal it was termed) coq10, normal carnitine. The geneticist feels he is mito and either not yet triggered or has some protective DNA that's inter-playing via his daddy. So...here we are. I'm following what I suggested above for the rest of us and treating as if. Most mito is only in one kid/spontaneous mutations in my understanding.

 

My son's geneticist told us the understanding is evolving even in the last six months.

 

Let me know if you have questions.

Edited May 11, 2010 by sbgrace