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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

You are right Kevscar

The trick is concentrating on getting what your child needs, not convincing tthem. It helps to develop a daily treatment plan you stick to and then explain the success of your treatment plan and show them how and where their expertise can slot into your treatment plan

It took me a long time to realise that they don't have to agree with you, but if you say no they can't do it. You may have to say no in loads of different ways and you have to teach your kid to be able to say no as well - mine says variations on' I don't think I can do this' and the first time he said this they tried about five different ways of making him do something but got the same reply (he was almost in tears though) and now he only has to say it once. As a result, we have access to a physio pool and gentle physio advice to rebuild muscles without having to be quite literally tortured. Always keep the end of what you know your child needs in sight.

Don't enter into any bargaining with them - none of this 'if you do this, I'll apply for this for you.'

I found that if they didn't want to provide the treatment I felt he needed, or provided it incorrectly, then I'd save up and pay for it myself. Or read up and do it myself.

Also, the osteopath (the gentle kind) was and is good on an occasional basis forr checking the body was recovering as straight as possible. In addition it was very theraputic for my son to be believed with the knock on effect of reducing the flight or fight response of the RSD . Don't forget versions of meditation (concentrating on breathing is the one we use)to calm it down too (10 min a day ?)

Don't believe them and make sure your kid knows you don't believe them (again to calm the adrenaline anxiety response) when they imply its in the mind.

I can assure you there's a world of difference between where my son is now the RSD is gone and he simply has an ankle injury to recover from - he cricks his ankle and it is extremely painful for a couple of days - and where he was - he'd walk too heavily on his foot once or bend his knee a mm more than he should and the RSD would kick in and he'd be in screaming agony for at least three days and nights.

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