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Perthes disease - 8 year old boy

(7 Posts)
noneshallsleep2 Wed 13-Jul-16 19:11:58

DS has just been diagnosed with this - all a bit of a shock really.

Is anyone else going through this at the moment? He's being very brave, and thinks having crutches is quite cool, but I'm worried about when the reality of no football, running etc sinks in.

We've been referred to Mr Zadeh at the Cromwell, who seems very nice, but was wondering whether any London Mumsnetters had experience of any other consultants?

Thanks

DollyTwat Wed 13-Jul-16 19:14:23

I had perthes. I spent 6 months in Standish hospital in traction, then months in plasters.
I don't know if they treat it differently now?

lljkk Wed 13-Jul-16 20:28:54

How it's treated depends on severity at diagnosis & age.

Not been thru it but watched a lad we know go thru it & out the other end.
The lad didn't follow instructions & will likely have a bad limp from 20s/30s onwards.

noneshallsleep2 Wed 13-Jul-16 20:40:28

Yes Dollytwat it's different now - we've been told careful observation, but that bed rest, plaster casts etc aren't used now as they don't seem to make a difference (sorry).

There's little sign of damage yet, which is good, but being slightly older is bad. So we've no idea!

TiggeryBear Wed 13-Jul-16 22:13:39

I'm sorry to hear that your DS has been diagnosed, my younger brother had it as a kid (but I can't remember what age, possibly 6?) he used a wheelchair to get around but could and would frequently when out making us look like frauds get out to use toilets, stairs etc but was told he couldn't do any weight bearing exercise, he was able to ride his bike, go swimming, pedal go kart, so was still able to go out with his friends. He got the all clear just before he started secondary school so was able to participate in sports. He's now in his 20s and doesn't seem to suffer any adverse effects.

DollyTwat Wed 13-Jul-16 23:09:49

I suffer with restless legs but I'm 47 and menopausal so could be that. I was able to do sports etc and had an ex Ray recently and they said there's just normal wear and tear - so maybe the treatment did work for me?

I do remember how very painful it was before I got diagnosed, so your ds has my sympathy and best wishes. I remember getting cards and visits from my school friends which was lovely, so he will appreciate those if he's off school for long

Tatti Thu 28-Jul-16 18:06:18

My son was diagnosed with Perthes at 7 - he is now 21 (in fact on the day you posted the thread!). Treatment varies on severity which is graded and can be very minor (minimal weight baring for a few weeks/months) or require surgery. I can give you more info on treatment if you like - let me know. There is a perthes support charity but some write ups can be a bit scary if you are just getting to grips with it. I will say though that treatment has changed a lot for the better over the years.

My son went on to be very sporty but only from 11 years onwards. We were restricted with some of the things we could do with him but we just worked around it. I'm sure you know but swimming is a good activity and anyone can do that so we had a lot of swimming parties!

You do have to learn to build it in to your life for a while but honestly you will all get through it and you'll get very good at knowing what works for him and what doesn't. Let me know if I can help any more - I don't want to go on in case you have since got loads of info.
VBW Karen

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