Hi My name is Karen and I m from the uk My daughter is 11 and was diagnosed...

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  • Hi Karen - I'm also based in the U.K. I was diagnosed with SK last year but have suffered since a teenager, the last 8 years or so (now 23). Unfortunately there will be limitations to what your daughter is able to do, at least I have certainly found that. It's important to avoid anything that involves excessive bending and/or twisting of the spine. I also have orthopaedic shoes to absorb shock. It's also very important to exercise regularly as she is, as you can seize up more when you're inactive. Cold weather severely affects my SK, and I know others in the group have also said the same. I have an electric blanket for bed which I find eases it a little, and a good mattress is essential. I find pills to have little to no affect, and would advise a good physiotherapist and/or chiropractor. Unfortunately SK varies and flares up and everyone has their own hints and tips for managing it. As your daughter is still young and her spine still forming I cannot stress the importance of a good back pack to distribute the weight evenly to prevent further damage. Sorry it's not better news but I hope that it helps in some way.

  • Thank you. I have bought her a new matteress and she has a wrap around heat pad which usually goes on after school. I find school think that I'm a pain for asking them that PE is left to her to decide if she can do it.

    The hospital phsyio gave her a sheet of excersises to do that is all, we have been left to get on with it.

    She is coping very well I just want to make sure there isn't any more I can do.

  • I raced motocross for 40 yrs and never quit because of the on/off pain sometimes severe. I just recently had an MRI to confirm I had a what the neurosurgeon said was SD but not a severe case. I'm doing RFA in a couple weeks in some spots where I had injections. I'm 59 yrs old but its getting much worse and had to quit motocross all together recently.

  • Xxxxxxx Yzzzzzz problem - I'm pleased to hear that your daughter is coping well. A positive attitude goes a long way, it's very easy to let it get the better of you. The best thing you can do is support her and keep her as upbeat as possible. There may be times where she's very down and it gets the better of her, probably more in her teenage years when her friends are doing things she can't. Again, it depends on the severity and how she handles it. But like anything there are good days and bad days - I found that the limitations are the hardest thing to accept, but my family, employers and friends have been amazing! I often feel a nuisance asking if someone can lift/carry for me, or go shopping with me so that I don't have to lift, but I've found it's more in your head than people actually finding you a nuisance. One particularly annoying thing RE schools is that SK is not very well understood and so it may be worth explaining to them what it is (if you haven't already) as I am often met with puzzled looks and not many people have heard of it.

  • Physiotherapy should help. Maybe acupuncture too. It's made a world of difference to my pain.

  • I might look at acupuncture for her. Thank you.

  • After 20+ years of pain I've been trying all sorts of non-medicine type treatments over the last year. From cold exposure to breathing techniques and meditation, etc. In December I met an exceptional physiotherapist who was finally able to help me. All the other PT's I'd met over the years would just tell me to try such and such stretch, and hand me a printout then send me on my way. But she was completely hands on with deep tissue massage and trigger point release around my spine. It made a massive difference after about 4 sessions, and she did acupuncture for about 15 mins at the end of each session. I went from daily very bad pain, to once every few days and even then it's different pain so I don't feel the need to jump on it with meds. I can wait for the next physio session which I now do once a week. She described the issue as like my thoracic had a constant migraine because the muscles were so tight around my vertebrae protecting the spine. Similar to muscle tightens in neck and head to cause an actual migraine. I can't recommend hands on physio highly enough, but you just might need to go through a few before you find one that is good. Mine told me a sports physio should be OK.

  • I am in the UK as well, been diagnosed when i was 15 (in france) and follow up was very poor. when i arrived in the UK I finally saw a chiropractor, who was trained in the state and had a very good knowledge of sheuerman! she help me a lot to put straight back every thing that was not due to compensation (neck, jaw, hips, and sheuerman). Now my partner is trained bowen, he does help me a lot as well with a weekly treatment. worth having alook at it as it support the daily pains and all. i struggled a lot when i was a teen as teacher in general thought i was just lazy and trying to find excuses to not do things (which was very wrong), so be vigilient with that