Kids with low tone are susceptible to scoliosis (this is where there ends up being a sideways curve in your spine), hip subluxation (otherwise known as a partial dislocation) or hip dysplasia (where the socket doesn’t fully cover the joint) – it’s not awesome. Apparently all three are painful (womp) and scoliosis can cause all sorts of eating problems (with your insides being stretched/squished by your spine).
There is a not a lot of prevention that can be done in kids with low tone… all the of the early intervention strategies are movement, exercise and positioning. But with kids that are like ours… what do we do? The NHS promotes positioning with things like sleep systems and regular (read: constant) repositioning throughout the day but really – that doesn’t prevent much. Exercise and strengthening the muscles that support the spine is whats needed, but that’s not helpful
Mikaere has low tone. He’s at risk of scoliosis and hip subluxation/dysplasia as a result. And you can see it, in the way he holds himself, how he struggles to stack his body the way that we do naturally – just how easy it would be for things just to misalign.
We spend all day everyday repositioning. It’s in how we hold him and how we move him and how we put him down, feed him and play with him. (There was a point in our first few days at hoe where I felt we were literally being taught how to be with our boy. Every single moment with him is an physio/ot/development moment where we teach his body and reposition his body with an eye to prevention. Holding his wrists, repositioning his knees, encouraging him to turn his head one way over the other, it’s never ending).
Positioning is one of the many things we think about constantly. Because that’s what’s there is for scoliosis prevention – repositioning and supportive seating. That’s to say, it’s the only treatment until you get to full body torso braces and surgery.
So we reposition. We stuff supportive pillows and tubes and straps down the backs of chairs and his carseat and line them along side his cribs. And every six months to a year he gets a spine/hip X-ray. So we go (if I’m clever I’ve paired the appointments with something else in the hospital). We X-ray. And we wait for results.
Our Physio knows it’s coming but we’re not ‘bad’ enough yet for a referral to orthotics.
This time there was no news. His hips don’t show any signs of sublaxation (hurrah) and his spine is still under the threshold for scoliosis treatment. Phew. We know that we’ll eventually be referred to orthotics, but we haven’t reached the ‘its bad enough for orthotics’ point yet. So we wait. We reposition. We put Mikaere in the stander. We hope.
So hey ho. Onwards we go.
