Oh Crap! DS just diagnosed with Perthes' Disease. Anyone else know about this?

[Noseynoonoo]

5 yr old DS has had a limp for almost a year. Only just diagnosed as Perthe's Disease. Just back from seeing GP. DH almost fainted and had to leave the room. I'm beating myself up over not having this diagnosed earlier.

Anyone have any experience of this?

[Noseynoonoo]

Just rang my mum. That was no help at all. She just talked at me and told me what I was thinking and what I must do. Would have been nice if she could have listened. She thinks she is so supportive.

[millymolls]

Sorry to hear this
Have you been given much information about this? Are they recommending any treatment (casts or such)? Maybe have a look here for more info
www.perthes.org.uk/what-is-perthes-disease/

Hopefully someone with experience will come along shortly

Good luck

[Noseynoonoo]

We're in the dark at the moment. Only just seen GP. He mentioned surgery/a brace but waiting to see consultant.

DS is so active. He is going to hate this.

Thanks for posting.

[HarderToKidnap]

Friends brother had it. I now he was in a brace for a while, this was the 80s though so treatment may have changed. However, he is now perfectly fit and well, in his thirties, keen jogger and no discernible after effects at all. Can't remember the treatment either, he was a little younger than your DS though.

[Showy]

You must be in terrible shock. Any diagnosis, particularly one where you're not entirely sure of impact and treatment just yet is daunting and more so when it's your darling child.

From my very limited knowledge of Perthes, it's brilliant news that he's the age he is. His chances of needing no intervention are at their best under 8 (I think) and also his chances of longterm effect are small too. I do know a boy who had Perthes and he had physio, was very well monitored and the bone reformed perfectly. No ill effects in the longterm.

Deal with it in manaeable chunks. Think what you need to do for now ie how his daily routine must change and print out some info for the school. Then deal with each appointment at a time.

And eat and drink. You'll be in shock. Take care. xxxx

[Showy]

Oh I do remember something about the boy I know who had it. He was v active too and was upset about not being able to do PE with his classmates. He was advised that he could swim so he carried on swimming at school and iirc even went along with other classes to make up his PE hours at school and he went swimming twice a week with his family. Not sure if swimming is still recommended but I thought it might reassure him to know that it's specific types of exercise which are problematic and while he's treated and healing, there might be other options.

[Noseynoonoo]

Well it seems we can't get a consultant appointment for 7 months despite being told time is of the essence. Will have to go private but struggling to find paediatric orthopaedic surgeon who is local and who operates from a hospital that would have a children's unit for DS to spend several weeks in.

DH is just annoyed with me.

[Pollydon]

Why on earth is your dh annoyed with you, op ?

[Noseynoonoo]

I think he was annoyed at my mild hysteria.

[JoshnOlliemum]

We had the sad wake up call 6 months ago that our 7yr old sport billy is out of action for about 3yrs after being diagnosed with Perthes. He has been such a fighter so far but it was easier in winter to keep him less active. He has had a few x rays and an arthogram and we have been advised we have to go through process and they will try and deal with the hip at the end of it. It is so hard and there is very little info. Perthes organisation of Steps charity are options.

[Em3978]

I had Perthe's, even though it is usually found in boys, apparently I'm odd!

I did luckily have quite a mild case, and with rest from PE, physio and a LOT of xrays I recovered without the need for surgery or casts.

I can now do anything any normal person should be able to do.