Sunday, 3 March 2013


Some of our more recent appointments have been to Great Ormond Street Hospital about Jessica's new diagnosis of Scoliosis.

Back in July last year, Jessica had an x-ray of her spine, on the advice of a doctor who knows a lot about Rett Syndrome. This is because it is very common for girls with Rett Syndrome to develop a curve in their spine - scoliosis. It was supposed to be baseline x-ray, a normal x-ray so that they have something to compare to in the future if Jessica were to develop problems . But when it came back, it showed that she already had a slight curve, so she was then referred to a spinal management team, as scoliosis in Rett Syndrome can have many implications. The hospital recommended that she wear a lycra body suit. This is a suit looks a bit like a wet suit, it has short arms and legs, and basically makes her look like she is about to go surfing! The aim of this is to encourage the spine to move into a straighter position while she is wearing it, but while maintaining her ability to sit and crawl. The alternative (a rigid brace) would still correct the alignment of the spine, but would have complications, such as limiting her mobility, and risk weakening her upper body strength and muscle tone. However, she is almost definately going to need a rigid brace in a few years time.

Jessica is not very keen on the body suit. It provides her with a lot of sensory input from the tightness of the suit on her skin (girls with Rett don’t “feel” things the way we do, so this must be very strange for her).  Jessica is also used to the curve in her spine now, and has adjusted how she sits and crawls. However because the body suit straightens her spine, it consequently  makes  her use different muscle groups from those she normally uses.  This means she finds it difficult to sit up and crawl whilst wearing it.

Ultimately, the hospital wants Jessica to be wearing the suit from morning to bedtime, but we need to start her slowly, just doing a few hours here and there. And so far, she is doing really well. She is learning to tolerate it (she no longer cries when we put it on) and is slowly learning how to sit and crawl in it.
I did want to upload some photos of Jessica, both with and without the body suit, so you would see what I mean, but for some reason I'm not able to. I will have to upload them another time when the problem has been resolved.  

While Jessica is trying to be brave, I know she hates it. It is so hard to make her wear the body suit when  she doesn’t understand why she needs to and the implications of not doing so. Indeed, the implications are so huge that I am not sure any 3 year old could grasp them.  I’m not sure even we have fully got our heads around how serious this all is, and what it could mean for the future.   But I am so proud of her for giving it a go, and trying to make it work for her. She puts up with so much and takes everything in her stride. She is an amazing little girl.


  1. Very interesting link to the PDF. Not relevant, but one of the universities in the study is Curtin, just up the road from where we lived in Perth. We knew several students there.

    Surgery can't even be contemplated, can it? Prevention has to be better, even if Jessica doesn't appreciate it now. Hopefully she will get used to it quickly. Hugs to you all!

    1. Hi there,

      They will consider surgery, but only when the curve is bad enough, and measures a certain angle on the system that they use to measure such things (the Cobb Angle). And also idealy only after the girls have done most of their growing, so are at least teenagers, otherwise I think it would need to be done again at some point. So the idea of the lycra body suit and the rigid brace are to delay, if not prevent the curve getting worse. And actually no-one really knows if the lycra body suit or indeed the brace even does anything, or if the curve will just do it's own thing anyway. But the surgery is major spinal surgery, and not to be undertaken lightly, so we have to give the body suit (and in a few years time, the rigid brace) a go.... x


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