Kinda Crunchy Mom

May 1, 2008

MCAD Mayday

Filed under: MCAD — by mcadmom @ 11:21 pm

Well, I lost my temper today.

Last year, the doctor at Children’s prescribed carnitine supplementation for Olivia.  We gave it to her for a while, but the full dosage made her smell.  Bad.  Dead fish bad.  So, we cut way back, and really only give the full dose when she is sick.

I knew this would be an issue at the visit, but, given the information we had about the carnitine (that is is controversial and that they are not sure if it really does anything) we didn’t feel badly about it.  According to Olivia’s latest blood work, though, her levels are on the lower end of normal and they really want us to do the supplementation.  Fine.  We discussed it on Monday and I fought every defensive impulse I had and just said we’ll give it a try and see what happens.

Today, though, on the heels of some pretty heavy stuff going on personally, the new message from the clinic pushed me over the edge.  Actually, the phrase “non-compliance” was what did it.  Although I understand why they used that phrasing (really, that’s what it is), I lost it.  I returned the call and left a scathing (and slightly crazed) message.

As a parent, you have to make so many decisions.  Most of the choices are made on the fly, with little information.  Some are emotionally loaded, some are complex. but in general you really have your tot’s best interest at heart.  From the outside, it is so easy to judge someone else’s parenting choices.  Of course everyone else would give the full dose–it was prescribed, right?  From our vantage point though, having Olivia smell like a fish market at 7pm was not worth the trade off of a drug that had questionable efficacy.

I’ve described MCAD management this way to other people:  Imagine if someone told you that if you do 100 jumping jacks at 4am every day, elephants won’t stampede through your living room.  So, every day you do these jumping jacks and you never see elephants.  At some point, though, you question the causality–does A have anything to do with B?

We’ve seen the test results, we know that Olivia has the genetic profile of someone with MCAD.  We take this very seriously, but at some point you start to wonder how much worry one life can hold.  When do we get to just relax?  When it comes to her eating, or when she is sick, we are as vigilant as can be.  Somehow, though, the daily dosing of meds is something else altogether. 

The other part of this, though, is that the physician’s advice seems to change all the time.  Last year we were told that, under no circumstances will Olivia be able to ever go more than 8 hours without food.  Last week we were told 12–yippee!  But it also makes us feel a little loopy, especially when the information is presented as something that we should have known all along.  For three years we were told that after age two, the diet is 20-25% fat.  Last week were told that 30% is acceptable–again, presented as if we should have already known.  So, then, the two things we were doing “right” were also wrong. 

It is hard as a mom to feel like this much of a failure after working with the people who are saving your child’s life.

Please don’t misunderstand, I am so grateful that we know about MCAD–the alternative is awful.  Most days I can put myself in that place where I am just glad that we have a diagnosis.  There are scarier disorders and diseases out there, and I am thankful every day that, if this is our “issue”, at least it is one that we can manage.  But there are days when that just isn’t enough, like today. 


Note–five minutes after this picture was taken, we had a “grape juice incident”.  The carpet survived, but the top is still in limbo.  Boo.


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