Thursday, September 27, 2012

When I was young we called these kids stubborn...

There is a misconception, even sometimes within the medical community, that RAS is caused by stubborn toddlers and permissive parents. 

I've been told L is spoiled, and that if we just put our foot down and ignore his seizures, he'll improve.  I've been laughed at for talking about "a tantrum" like it was a medical condition.   I've been warned that L has found a way to attract attention and he'll keep "holding his breath" as long as he keeps getting it.

It's true that L's seizures are caused by lack of oxygen to the brain.  But L doesn't hold his breath.  His heart stops.  His breathing stops.  He cannot cause a seizure because he wants to, and he can't stop one if he tries.

Needless to say, I am not a big fan of this misconception.
 
And it would be so easy to make this post about how RAS is a real medical condition and the breath-holding is a stubborn kid's trick.  But even if it is intentional, breath-holding has real effects, and in some cases, it's severe enough to cause seizures.  The families dealing with breath-holding are probably suffering just as deeply as we are.

It's hard to be a mom dealing with a difficult medical condition.  Movies like Despicable Me that make light of breath-holding don't make it any easier for anyone.

 

2 comments:

  1. So well said!

    My son has a severe nut allergy and several years back the animated movie "Meet the Robinsons" had a scene where they fed an allergic child peanut butter and he blew up like a balloon. They "popped" him with an EpiPen and then he was fine. Yeah, that's not at all what it's like when someone almost dies from a peanut reaction. And hey, it's really not a laugh riot like it was in the movie either.

    Thanks for writing about RAS. I guarantee you've helped educate people with this post and also given us something to think about. Thanks!--Lisa

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    1. I never saw that one, but I can imagine how infuriating that would be. At least RAS isn't life-threatening!

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