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Perthes Disease - anyone has any experience?

(14 Posts)
mailfuckoff Tue 21-Feb-17 12:46:10

My son has been diagnosed with perthes disease but I don't know much more about it then that. No time in an nhs appointment to explain much other than he will have regular check ups. Does anyone else have a child with this? He is 7 and I'm scared he may never recover

mailfuckoff Wed 22-Feb-17 18:15:11

Bump

blueskyinmarch Wed 22-Feb-17 18:18:03

I know virtually nothing about Perthes but I know my friends DS had it. He is now a strapping, fit 22 year old who teaches classes in a fitness centre and is a personal trainer. From that i would presume it is something that they can grow out of?

mailfuckoff Wed 22-Feb-17 18:30:52

That's hopeful news. The website is soon and gloom with worse case senarios so we don't know what to expect

Jemimapuddleduk Thu 23-Feb-17 17:26:54

My youngest brother had this as a child. He avoided surgery, just intense chemo. He's now in his mid 30's doing fab in his career and with a little boy he runs round after! He may need a hip replacement op over the next few years but otherwise all good and you'd never know!

Jemimapuddleduk Thu 23-Feb-17 17:27:35

Not intense chemo/ intense physio! Hope I didn't panic you!

AndnoneforGretchenWeinersBye Thu 23-Feb-17 23:36:48

Hi there. I had Perthes as a 4-5 year old in the late 80's. My femoral head had disintegrated completely. I had a pin fitted and was in and out of hospital for a year or so. However. I'm now a fit and healthy ish 32 year old who has had no recurring issues since the pub was taken out. These days, I believe we know about bone growth enough that it's mainly treated with rest & painkillers, as as long as the femoral head hasn't deteriorated drastically the bone should regrow.

Basically, it stems from a lack of blood to the femoral head (ball part of ball and socket hip joint). The one then disintegrates, for want of a better word. Usually, blood flow starts again and the bone regrows. In extreme cases it doesn't - and that's when surgery happens. But like I said, there's a much better understanding of it these days and surgery is usually a last resort. Although it was many, many years ago, feel free to PM me if you want any more details, I remember it all surprisingly!!! Good luck OP - and please don't worry. I ran 5k yesterday, so am clearly fine!!

PlaymobilPirate Fri 24-Feb-17 00:00:34

My dp had it as a child- he remembers wearing callipers and using a wheelchair for a year when he was about 6. No problems since - although docs have said he may be more prone to arthritis in his hips / legs. He's a 46 year old builder and has been fine since childhood

mailfuckoff Fri 24-Feb-17 09:10:21

Thanks everyone for your stories. My ds is in pain and it's heaetbreaking to watch him so the knowledge that he can make a full recovery is good.

noneshallsleep2 Tue 28-Feb-17 15:53:22

Hi, my 9 year old son was diagnosed with Perthes last July. We are still very much in the middle of it at the moment - he had an operation last November, which seems to have gone OK, but he is having to do lots of physio, isn't fully mobile yet and we're now just monitoring it to see how it goes.

Unfortunately, perthes is quite unusual, so there doesn't seem to be a consistent answer as to the best way to treat it. There are also all sorts of factors that impact how it will develop and be treated - how old the child is when it develops, how much the head of the femur is affected, and how much movement there is in the hip.

The best website I found was from the Perthes Association, and they have a helpline if you feel in need of a chat. When looking at websites, please bear in mind that the approach to treatment is very different in the US - they seem much more likely to put the children in "broomstick" casts than they do in the UK - so they may not be a very good guide to what to expect.

I hope that helps a bit, but I know it is very hard to see an active boy being told he can't run or jump.

mailfuckoff Tue 28-Feb-17 17:59:52

Thanks for your post, it's the not knowing that's the hardest thing I think. I hate not being able to answer my ds questions. What have you done about days out, public transport , just normal life things?

noneshallsleep2 Tue 28-Feb-17 19:09:03

Have sent you a DM

TiggeryBear Tue 28-Feb-17 19:30:16

My brother had it as a child - about 5(?) he was unable to do any weight bearing exercise but was okay to cycle & swim (just not frogs legs) he used a wheelchair for any extended periods of walking etc - the wheelchair folded up quite small so was easy to get in the boot of the car on trains etc.
With regards to managing the pain - he used to have a hot water bottle on it at night when it was bad with calpol (or the equivalent) & warm baths.
Our parents decided not to go down the surgical route & we all feel this was the right decision for our family.
My brother is now in his 20s with a very active toddler & doesn't seem to be suffering any adverse effects.
The Drs said he may require a hip replacement at an earlier age than most but it's not a certainty.

lljkk Tue 28-Feb-17 19:52:08

Neighbour lad had it, finished treatment maybe 3 yrs ago, but seems to now have a limp & became quite overweight. I think limp is because he ran around all the time. (I mean literally ran around outside playing, when he was supposed to be in a wheelchair). He just didn't follow doctor directions.

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