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Old 11-09-2014, 10:29 PM
Elliottsmum Elliottsmum is offline
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Join Date: May 2014
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Default Managing the emotions

Hello

I have a six year old boy who was diagnosed with scoliosis late last year. He had a 22 degree angle in May 2013 which progressed to 39 degrees by Feb this year. MRIs confirmed he has syringomyelia and a chiari malformation and he had decompression surgery in July. He received a Boston brace just before the surgery, which we didn't get him into until early August. At his appointment last week, his curve has come back to 21 degrees (which is a positive sign as he'd really only been wearing it about 12 hours a day for 3 weeks).

He is fine about wearing it to bed, but wearing it to school is becoming more and more problematic. The happiness drains out of him when he puts it on under his school uniform and several times I have found him stabbing at his chest saying 'I hate this, I hate this'. I have tried positioning it as a superhero shield, explaining it will make his back straight etc, but would welcome any other ideas parents have tried. He is a resilient child (his father died when he was 2 and we've also moved countries) but this has me baffled.

Has anyone tried play therapy or had any other similar support from their medical team? I can't fault his clinical care, but find the team don't consider the whole child and their overall well being. I know having a straight back is very important, but so is having a child who wants to go to school and participate in their normal childhood activities. My son just wants to play on his ipad, despite all sorts of encouragement, bribes and even getting cross. His usual love of life and easygoing nature isn't there at the moment.

Does anyone have any strategies they can share? I am finding it almost as hard as he is.

Thank you
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