Saturday, July 30, 2011

Ambivalent feelings about L-Carnitine supplements

So I'm gonna start off by saying that I'm not a fan of supplements, whatever their form.  I don't take vitamins, and I was reluctant to even give Cupcake vitamin D drops (in the end I was spotty about remembering).  I also don't give her iron supplements, choosing instead to make sure I'm feeding her meats/spinach/legumes.   This might make me a terrible, mom, but I'm cool with it.  :)

So when our doctor told us to give Cupcake daily L-Carnitine for her MCAD Deficiency, I was dubious.  But hey, I'll follow doctors orders if they're necessary.

Cupcake's New Born Screening numbers were very alarming.  So much so, that the Metabolic doctors recommended that we give her the highest dosage of L-Carnitine for her weight, which I believe was 2 ml per day.  Since we were new to the whole FaOD world, we did as instructed, and it was a colossal failure.  She would scream every time we gave her the drops, which was twice a day, and we would all dread them.  Still, if that's what's necessary, I figured we should toughen up.  I believe in modern medicine.

At our follow up appointment one week later we asked the doctor if the Carnitine was strictly necessary.  By this point, Cupcake's new labs were in, and her levels were much more stable.  She still had MCAD (I'd been hoping for a false positive, but no such luck), but the situation wasn't as dramatic.  And since Carnitine is controversial anyway, we made the decision together, with our doctor's approval, to only give it to her when she got sick. 

Our doctors trust us.  We had by that point shown them our anal retentive tendencies of tracking all her feedings and diapers, so I think they felt confident that we'd be able to make the call if anything was amiss with Cupcake.  Each case is different, of course, but I was more comfortable with giving medication only when absolutely necessary rather than as a precaution.

For her next two colds, we gave her L-carnitine from a syringe, and all was fine.  I doubt she liked it, but it was a non issue.

Then we had the recent Roseola fever scare.  When her fever spiked at over 102, we called the Metabolic Center, and they informed us that our new L-Carnitine dosage was 5 ml, two times a day.  That night, after she was done breastfeeding one side, we tried to put the syringe in her mouth and administer the meds.  Forcefully, I might add, since she was refusing it.  And then all h*ll broke loose. 

Firstly, she swatted the meds away, which seems like a normal reaction.  But afterwards, she started refusing all food and liquid.  I just don't think she trusted us anymore, after we had pried her mouth open to put nasty medication in her mouth. (And L-Carnitine smells nasty, I can't even imagine the aftertaste it must have)  Every time I tried to breast feed, she would scream and swat the boob away.  Luckily, she was okay with bottles of formula, and we were able to persuade her to have a couple of ounces.

For two days, she refused almost all food.  And this baby has one of the healthiest appetites I've even known.  It was probably the fever taking away her appetite, but it's too much of a coincidence that all this happened right after the Carnitine.  I think the two issues are related.

So we didn't give L-Carnitine to her again.  It seemed that our best shot to have her eat again would be to not freak her out with forced medicine.  Eventually she started eating, and her fever broke at just about the time we were to see the Metabolic specialist.

We discussed with our metabolic doctor what to do about the L-Carnitine next time she got sick.  And we all agreed that it's more important to have Cupcake eat real food (calories!) than take the medical supplement.  Her advice was to mix it with something to mask the taste, and she specifically recommended Hawaiian punch as something that has hides nasty medication flavors  I vowed right then and there to never judge another mother again if I see them feeding their babies nasty unnatural foods.  You never know the whole story...

So we'll be taking a break from Carnitine unless the Hawaiian punch business works out.  I understand that L-Carnitine supplementation has worked wonders for other children with metabolic conditions.  But in our case, we'll be playing it by ear for a while.


  1. Our Metabolic specialist says he wants DD to build up stores of Carnitine in her tissue so she can utilize them incase of a sickness...even though her carnitine levels have always been normal. At 4 months she's taking 6 ml a day and while I don't think it tastes ultra gross, it makes my mouth tingle in a strange, numbing way! I don't blame your daughter for not wanting to take it!

  2. I'm constantly fascinated by how different each MCAD case is.

    And I've also wondered if it would have been better to be giving her carnitine every day. That way she'd be used to it, and it wouldn't be this scary nasty medication on top of feeling sick.

  3. We have also been giving it to our little guy twice a day everyday and he takes it no problem, actually seems to like it. My hubby did try it because he thinks it is only fair that we know what it is like. (He didn't think that it was that bad)I am glad that we have been. We have had 3 bouts of the stomach flu tear through our house the last 3 months and our little guy has managed to steer clear. I had been thinking that perhaps the Carnitine is what has saved him. Our most recent bout was this last weekend so I am not certain he is in the clear yet. I am having a hard time not thinking about how much harder we have it when it comes to illness.

  4. I'm so glad you guys made it through stomach flu. We haven't had those yet (knock on wood), and I'm not looking forward to it happening one day. In that situation, yes, they HAVE to have the carnitine.

    And your hubby didn't think it tasted bad? I haven't actually tasted it, Ijust can't stand the smell of it. Maybe I should try it...and realize it's not that bad, you know?

  5. I have to take it for primary carnitine deficiency. As an adult I can tell you that the pills are not at all nasty, but they are in a gelcap. I can tell you that if I don't take my carnitine, I am much worse off healthwise and appetite is one of the things that goes first. Acetyl L-Carnitine has very few side affects aside from two -- gastrointestinal upset in larger doses and the smell. I am supposed to take 3grams but can only tolerate 1,500 grams per day. So your baby may not like the taste, but she won't be able to tell you whether it actually helps her physically. You might want to reconsider because low carnitine can be making her very sick. Carnitine is the only treatment for primary carnitine deficiency so to think of it as a supplement diminishes the efficacy of this medicine in treatment of certain diseases. I never took vitamins or supplements when I was young. I had the same opinion you do, but I'm regretting it now.