Monday, January 30, 2012

Do all special needs parents do this?

I read things like this, and I panic.

This child with Fragile X started taking minocycline as a little baby and is now READING at age 4.  READING?!?!?!?!
Immediate panic seizes my heart.  I could have started my boys on minocycline as babies.  I've known they have Fragile X since they were 14 months old.  We could have started it the next day.

OMG, what have I done?  I missed the boat.  If a 4-year-old is reading after taking minocycline, my boys could be writing short stories by now.  They could be doing advanced algebra. 

Okay, they could at least be potty trained.

See?  Irrational thoughts overtake me.  I'm terrified that they key to "fixing" them is something that I bypassed.  That may be why I felt compelled to get involved in the drug trial.

Do other special needs parents do this?  Do we all watch for new treatments and promising medications?  Do we all panic that we didn't try the right medication soon enough and now our children are destined to lead unfulfilling lives?

I imagine a big room full of Fragile X families, where those who have been on minocycline are functional adults, and are shaking their heads and looking sympathetically at those families who didn't try it. 

I know, it's kind of ridiculous.  At least I'm not too dramatic, right?

See, I hear things like what this article says, and in my mind, if a 4-year-old with Fragile X is reading, that equals CURED.

When people tell me that their child is able to function better in public and talk more and be less anxious on the STX209 medication, to me, it's like they said CURED.  I knew it wasn't a cure.  In the front of my mind.  But in the back of my mind, my expectations soared.  I fantasized that we'd all be shocked at how dazzlingly advanced they were, on this trial med.

I'm not shocked.  I'm pleased.  But the changes aren't as mind-blowing as I'd expected.

There's reasons not to try minocycline yet.  I've heard you aren't supposed to give it to children until they are around 8 years old.  Until all their grown-up teeth come in.  Because if you take minocycline before all your grown up teeth come in, it'll turn them gray.  Not just a little grayish.  Totally, throughout the whole tooth, dark gray.  Noticeable, cannot-be-bleached gray.

So one might ask herself; what's the lesser evil?  Full mutation Fragile X, or gray teeth?

I didn't bother answering that question because it seemed like most of my fellow Fragile x parents were waiting until the grown-up teeth came in.  Or avoiding minocycline altogether, because it is an antibiotic, which taken long term can cause immune system problems and will kill all the good bacteria in your kids' stomaches.  Making them get sick more often.  Causing them lots of physical problems.

And above all else, it's not a CURE.  It's a medication that helps a lot of Fragile X patients.  Not 100% of them.  But many of them.

But, CRIPES!  READING!  She is excelling in at least one area of her development.

Not a day goes by that I don't argue with myself.  I'm never, ever sure we are doing the right thing.  I sure hope that boat doesn't sail away without us.

1 comment:

Kim and Steve said...

Bonnie, you did what you thought was right at the time based on the risks you knew about. You did the right thing! That said, I have no doubt I'd feel the same way if I'd done the same.


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