BWS Support
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Spine issues


I'm new to the group. My son is 15 now and he's having a lot of back pain. He hasn't really presented with any issues from BWS since he was a little boy. After we finished the ultrasounds, I stopped obsessing and worrying so much. Now that he's entered adolescence and is having a huge growth spurt, he's been diagnosed with Kyphosis, which is a fancy way of saying he has a hunchback. At his school physical today, I noticed his neck and shoulder on one side are dramatically different, more bulk, more muscle, higher than the other, and definitely looking like hemitrophy or whatever that uneven growth is called. This was never noticeable before, in other words, appears to be new, and appears to be related to puberty. Two doctors said we shouldn't do anything about it, but as is usual, neither one knew about BWS until I explained it to them. Has anyone out there with adolescent BWS kids also seen kyphosis? I've read that scoliosis is often associated with BSW, but couldn't find kyphosis mentioned anywhere? Any other back and spine issues, and any other experiences with profound growth issues at adolescence that I should expect? Also, is there any advice on helping a teen with BWS deal with self image?

Thanks for your help.

3 Replies

My son too is 15, with BWS and other medical conditions too. He has grown very rapidly over the past few years but doesn't have hemihypertrophy. He was growing so fast he had to have epiphysiodesis surgery to slow him down. He does have mild scoliosis and does sometimes appear a little hunched, partly because he is often stooping as he is 6ft 5.

I am aware that due to poor abdominal muscles some BWS children have poor core strength and therefore are more prone to back problems. A good physiotherapist can advise here. And hemihypertrophy sometimes only appears in later childhood. Although we haven't seen many families reporting this to us.

Where do you live? I think you should try and see a peadiatrician who has experience of BWS or at least experience of growth disorders.

Regarding self image, I don't think there is any information specific to BWS. But there is a lot of information on the web about teenagers and self image which would probably be just as helpful. The cause of the poor self image is less important than how it is handled. Occasionally though it may be helpful for children with complex medical problems to see a clinical psychologist to help them come to terms with their condition and how it impacts them.

I hope you get the help you need.

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I agree with everything that Songbird63 has said, and would add the following:

Definitely get a physiotherapist involved in treatment, especially if hemihypertrophy is involved. You may also choose to see a chiropractor. Your son will need a specialised exercise programme to help him minimise and hopefully reverse any damage done. My daughter is currently receiving physiotherapy treatment, although she's only 16 months, but it's really important to educate yourself and your son how best to care for himself. I feel hemihypertrophy, whenever it occurs, is something about which we know a great deal, and there are many options available for treatment and management. The linkage with his BWS diagnosis, should ensure you receive treatment as a part of that condition (and hopefully free, wherever you are).

There are too many Doctors out there who are under educated regarding non surgical treatments available such as physiotherapy and chiropractic. I had a personal instance where I had a 3rd degree ankle sprain, and was advised in hospital to wait 6 weeks before receiving physio. I ignored this advice, went to the physio the next day and was walking again (slowly and painfully) within the week.

Probably the physio will recommend yoga and/or pilates for core strength and to balance uneven tone, so if there's a delay in seeing a physiotherapist, definitely take the step and enrol him in a class immediately.

Ignoring a problem like this at such a crucial stage seems crazy to me, and I'm surprised the Doctors don't want to recommend anything to improve the situation. I'm guessing you feel the same way, hence your post.

In relation to his low self esteem, there are many community based programs to help people of every age to cope with issues they are facing. You should enquire with your Doctor or simply Google for free programs in your area. Also, if you or your partner work, your employer may have an Employee Assistance Program that could provide some free counselling sessions for your son.

Best of luck


Update. ... We're in Alaska and we have kow been referred to the Shriners Hospital in chicago. They're going to put a rod in his back and fuse seveal vertebrae.

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