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Neck Support |
| Hi, my niece has just been diagnosed with SMA, not sure which type yet. She's 4 months old. We are trying to find a neck support, as she's unable to hold her head unsupported. Anyone know where I could buy something suitable, or any advice that may be useful? Thanks x |
| Posted: Mon May 29, 2006 10:35 pm |
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Re: Neck Support |
Hi Flower. First of all, I'm sorry to hear that your niece has been diagnosed with SMA - your family must be in great state of shock. Many of the families here have been through the pain of diagnosis and will be empathising with you. Don't hesitate to get in touch with the JTSMA office for support in every way!
With the diagnosis of SMA, hopefully you have had good support from the medical community. I'd ask to be referred to an Occupational Therapist and/or Physical Therapist for these kind of management issues.
You should also be able to get some practical information and advice from both the JTSMA office and from the fact sheets in the management section at http://www.jtsma.org.uk/sma_management.html
It would also be useful to know in what situations (sitting in a chair, lying in a bath) that you're looking to find neck support for. |
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Re: Re: Neck Support |
| Hi Gareth, Thanks. At present the support is mainly for when she's sitting/propped up. Currently she's in hospital in Picu with respiratory problems, but doing well. The unit don't seem to have anything suitable for supporting her head. We will try anything to make her more comfortable. I will have a look at those pages, and maybe give the office a call too. And certainly will ensure OT are involved from now on. Thanks, will keep you posted. x |
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| Tue May 30, 2006 12:57 pm |
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Re: Re: Re: Neck Support |
Dear Flower
For our daughter Helena we used a variety of neck supports. When she was 6 months to about 2 years we used a little baby travel C shaped neck support (John Lewis and I am sure other baby shops). Mothercare and Halfords I know also used to do some wider neck supports for in car travel which would work for a larger child. It might be worth experimenting with say a small rolled towel behind her neck to see what amount seems to provide the greatest degree of comfort - we regularly used to do that, or lie her over a soft squishy toy. We used to at night roll up a small towel under her sheet in the neck region for support. You may notice a neck position which seems more comfy, and in which the breathing seems easier. If the neck is pushed to far forward then that will not be good for her airway - similarly too little support wont either. The neck needs to be in a nice "neutral position" - ie what it would be in the rest position if she had neck muscles that worked normally. Then get OT to think about it. I think it's very much trial and error to see what suits. Helena did have some side to side neck movement, which would be reduced with the neck support so sometimes she wouldnt have neck support to enjoy that bit of movement she had. In the bath when she was bigger she used the Schwimmi neck band which I think I mentioned in the daily care leaflet from the JT. Best wishes, Lilias |
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| Fri Jul 21, 2006 10:18 am |
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