Wednesday, April 13, 2011

6 month MCADD appointment

I'm not a fan of doctors offices, in particular with specialists that tend to overreact and make my life dramatic.  But I couldn't be happier with Cupcake's metabolic team at Mt Sinai, though.  They are easy going, warm, and very reassuring. 

Cupcake is 6 months now, and she went for her mid-year appointment.  She's doing great!  No metabolic crisis so far (which we don't know if it's because she's asymptomatic, or because we've been diligent with her feedings; in either case, yay!!).  She weighs almost 18 lbs, and is tall for her age.  Which is unrelated to MCADD, but it's reassuring to know that she's growing rapidly.  Then the doctor played with Cupcake a bit, to get a sense if she could respond, babble, sit on her own, had a good grip, etc.  And of course she can do all those things!  So to our immense relief, they decided they didn't need blood samples.  Cupcake is hitting her physical milestones well, and is fat and growing, so there's no point in getting a metabolic breakdown at this point.

Also, we've been cleared to have her go 5 HOURS without feeding.  And another hour every month until we hit the 8 hour mark.  Our doctors here don't feel comfortable having her go longer than 8 hours until she's about two, mostly because her initial C8/C10 numbers as a newborn were really high (or was it low? whatever it was, it was not the desired amount, lol).  So now we have the luxury of sleeping one whole hour longer, and a baby that probably will not cooperate.  Whatever, I'm just excited to join the throng of parents that can complain about normal night wakings. And isn't 5-6 hours technically considered sleeping through the night?  Music to my ears.

The older cupcake gets, the less MCADD scares me.  She's 6 months now, she's eating solids and still breastfeeding wonderfully.  Her body is strong, and she's getting more and more antibodies as she's exposed to the world.  She's up to date with her vaccines.  She'll have stronger defenses to fight disease.  I know that with an FOD you're never out of the woods, but as she gets bigger and older it feels much more manageable.  My heart goes out to all my fellow mamas that had to take their weeks-old babies to the ER.  It must be very scary and you have my utmost admiration.

So now we are diving into solid foods, and our doctor told us not stress over it too much.  Keep nursing Cupcake at our normal times, and she will naturally take less milk as she eats more food.  It's easy during the day, when we can observe if anything is different.  The danger is at night, when we wouldn't notice if she's lethargic because she's sleeping, and we are too tired.  We were even told to not worry about her diet too much at this point, since she'll still be nursing and getting all her proteins from me.  We'll go back to see them in 3-4 months, once Cupcake starts taking protein and her eating habits shift to solid food.  At that point, we'll meet with a nutritionist to give us some tips.  But even then, it seems that as long as she's not fasting, MCADD doesn't require a strict diet.  Just make sure it's low fat, but that's what ALL of us should be eating anyway.


  1. I'm hoping we get to go past 6 hours at Klaw's appointment next month.

    Each hour you get to add is SO WONDERFUL!!!!

    Congrats on a good check up and no blood work.

  2. Thanks, and good luck getting one more hour of sleep!

    I have a feeling that even though we *can*, it doesn't mean we'll actually get the full 5 hours any time soon :)

  3. Wow,so awesome that everything is going great. I am encouraged by your good check up. I am anxiously awaiting our first appointment. I wish we had a specialist closer to home. I have my fingers crossed for you that cupcake will adjust and start sleeping the 5 hours for you.

  4. We've been lucky that there's a specialist in the city. Then again, we're in NYC, so it's over a 45 minute drive to get there, so it's not that convenient either.