Perthes (age 4) - help with practical advice...

[FlirtyThirty]

My son (age 4) has recently been diagnosed with Perthes. It started with a charateristic pain-free limp, and after a bit of persistence with various GPs, we had it diagnosed within a month of the first limping episode. Having done some Googling, I think this was probably about as fast as the diagnosis could have happened though - so I'm thankful for that.

IT was confirmed at the consultant meeting that he had the condition, and he advised swimming, cycling and no trampolining, but other than that...nothing. He didn't really give us any specifics about DS or advice. The consultant says he'll see DS every 2 months, and x-ray on alternate visits. That was it.

We left with no other information on what we should/shouldn't do...how his particular bone is looking...whether his case looks good/bad (other than a comment that most children of his age have good prognosis)...I feel a bit in limbo.

It's like we have a serious diagnosis and are doing nothing about it (bar putting the trampoline away). I can't help but think there could be something more we could do...?!

Anyway...for now I wonder if any other Perthes parents could help with a few questions...

1. Just how bad does it get and how quickly? I understand that there are many, many variables to this condition. But I am trying to prepare myself and my son at least a little. I do not want to give him too much information, or frighten him, but at the same time he is pretty smart and I feel I owe it to him to prepare him at least a little. He is broadly carrying on as normal right now...when will this change? And I'm assuming it will...?

1. Is he pretty much guaranteed to have crutches and/or a wheelchair as the degeneration progresses? Are there children who don't need them?

1. At what point does the serious the pain start? Right now, he seems broadly pain free unless he runs (and he is a very sporty little boy...so this breaks my heart). There must surely be approximate timescales for the progression of the condition...?

1. Are there any special exercises I can get him to do to maintain mobility - he swims and cycles a lot! We live near a hydrotherapy pool...do you think I could get help there?

1. What - other than a summary of the disease and limiting jumping/running - do I tell his teacher/school? He starts reception in 2 weeks!

I feel like we are doing nothing proactive to help him...like we just have to sit and watch his leg degenerate and hope.... Is there ANYTHING else I can do??

Thank you so much for any help!

Hi. My SIL was diagnosed with this at a similar age. She is late 30s now. There was no specific regime they had to follow just had regular check ups and X-rays. As far as I understand there is no treatment. It starts spontaneously and the blood supply can kick back in at any time too. Anyway, obviously every case is different but my SIL is fine. She still has it monitored but it has never stopped her in anything. No crutches or wheelchair ever. She runs/walks/hikes etc etc. Just to give you some idea that it may not be all bad. If you are really unsure try and get back to speak to the consultant. I know they can be a bit vague and off hand, but also they probably don't know how things are going to develop either.

I feel your angst as one of my children has Dysplasia of the hip and has undergone surgery etc.

Good luck. X