Wednesday, February 23, 2011

Cold is over - no MCAD crisis

We are now back to a sense of normalcy.  After having an awful long weekend of runny noses, sore throats and neediness (and that was just me!) we seem to be over the illness hump.  It's winter, what are you gonna do, common colds happen.

On Monday I freaked out the most.  Nate had the day off from work and kept cuddling Cupcake all day (she really looked under the weather) and I also felt sick.  (In retrospect, I wonder if my own feeling of yuckiness contributed to our fearing that Cupcake was sicker than she really was.)  And we noticed early in the morning that Cupcake still had a slight fever.  It was only 99.5, which she'd had since the day before, but because of MCAD we feeling a little more careful.

I called her Metabolic center, and even though they were closed for the holiday there is always someone to answer an emergency line.  I felt silly calling the emergency number, since we really were at home at the moment without any type of metabolic problems, but I didn't want to wait until it became a problem.  I wanted to double-check that we were doing everything right, and to ask how much Carnitine to give Cupcake.

Note: Our doctor originally prescribed carnitine every day, but when we went to the one month follow-up appointment, we discussed how it's effects are controversial and it's not really necessary to take it unless the baby is in metabolic distress.  Since we are super observant parents who keep anal retentive records of her poopie diapers, feeding schedule and sleep patters, we all felt confident we'd be able to spot a change in her rhythm/behavior, so she went off the carnitine.  Other doctors might have different ideas, and other babies might have different needs.  Also, our diligent record-keeping is unrelated to her MCAD diagnosis, that's just how we prefer organize our information, if your kid has MCAD, you will find your own way to keeping track of things.

The on-call doctor/nurse was wonderful, and after looking up Cupcake on the system was able to reassure us that we were doing fine at the moment.  She asked if Cupcake was lethargic, which is so hard to ascertain with a sick baby, but we finally reached the agreement that while everyone is down on the dumps when sick,  true lethargy would involve excessive sleeping and floppiness.  And while Cupcake wasn't trying to jump off table like she usually does, she was certainly still very awake and laughing.  We also confirmed that her reduced nursing was fine.  This was the actual issue that set alarm bells ringing in my head.  You see, I know that as long as she's feeding regularly, all other issues become secondary.  But Cupcake was so stuffed up that she just didn't really want to nurse that much, and was pulling off the boob much earlier than usual, eating probably half of her usual intake.  The on-call doctor assured us that as long as she was eating something, we could avert a metabolic crisis.  Just feed her more often.  Oh, and her new dose of Carnitine is 3.5 ml, almost twice as much as her newborn dosage.  Crazy how they grow.  And furthermore, Cupcake has made a qualitative jump in the last 4 months and is now curious about all things going into her mouth.  So carnitine?  She seems to love it now, and was actively sucking from the syringe.  Thank Dog for small miracles.  Or maybe my baby is just so awesome that she likes meds when she needs them.

For two days we gave her carnitine, infant Tylenol, and  suctioned her nose before every feeding (which she HATES), and by last night she was looking much better.  The energy was back, she looked alert, hungry and happy.  And this morning she's pretty much back to normal.  Her nose is still a bit stuffy, but that seems par with winter, but mostly, her disposition is back to normal.

I know that going to the ER is probably an eventuality, and we are ready to deal with it.  I'm just glad that it didn't happen yet.  I was convinced that this was it, a feverish baby a reduced appetite is exactly the situation the doctors told us to watch out for.  But it turns out that sometimes, being extra observant is enough, and we got through it without any crazy hospital shenanigans.

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