don’t hold your breath

Rett Syndrome is an interesting thing.

One minute you can be reading up on things that are yet to present themselves in your daughter, and the next – she’s doing it.

Jovie has been hyperventilating and swallowing air for at least a year now, and I used to say thank goodness she’s not holding her breath. (Because it’s one less thing we have to keep an eye on..). But low and behold a few weeks ago, she’s started to hold her breath. Sometimes for a few seconds, sometimes a few seconds more that I’m comfortable with. Her belly expands to what looks like 8 months pregnant to me, and she arches her back to make her bump even bumpier.


I could probably take a better photo of her tummy pre & post inflation, but you get the idea. It’s big enough to stretch out her clothes.

She’s not distressed by it. Together with the air swallowing and hyperventilation, it’s just made her heaps gassier and she now can burp like a frat boy and fart like one too.

But it’s interesting how a genetic mutation makes your body do things like holding your breath or swallow air. In the same way my own DNA makes me short and my hair black, Rett makes you do things that you just can’t change.


Tina WaltonAugust 27th, 2012 at 9:09 am

Hi there,
My Laura, age 7, does this exact thing too. She can hold longer than I and sometimes makes me a bit nervous. Do you have a way to make her stop? We try to make her laugh, but I think she is wise.

TraceyAugust 29th, 2012 at 10:50 am

Hi Tina :) There’s no way around it, I think. I’ll talk to our neurologist about it, but it’s just a ‘natural’ reflex that comes with RS.

I just make sure she breathes out and keep her company in the mean time.

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