Perthes disease

[tharsheblows]

I've done a search and know there's a thread on this already but... anyone have any experience with Perthes disease? My 10 yo son is looking at a diagnosis - we're seeing a paed orthopedic surgeon on Tuesday.

Anyway, any experience / advice / info is welcome. And any recommendations for a consultant to use as a second opinion would be great. We're in London.

Poor mite, he also just found out that his allergy to peanuts is still off the scale, in the literal way - he (and I) were hoping that it would have diminished somewhat. And the ibuprofen he's been taking has exacerbated his asthma. He's happy to be staying inside and playing video games though...

Anyone? Please?

Am getting rather worried by it - not helped by the fact that he's been suffering from an allergic reaction to something he put his hand on whilst on the train 3 days ago.

Ha - I sound quite sorry for myself. I feel quite sorry for myself and for him too tbh.

Hi tharsheblows,

Sorry, I don't have much knowledge of Perthes disease - but wanted to wish you luck.

My daughter had avascular necrosis of the femoral head, wherein the blood supply in the top of hip died off, so she'll develop a limp, depending on how badly the two hips become assymetrical, over time. I THINK that this is a little like Perthes except for the fact in Perthes the blood supply can come back, so that problems can be short/medium term rather than permanent. Huge apologies if this is misinformation - but just wanted to post a message to say that you're not alone.

The charity STEPS might also be a good port of call for information.

Funnily, my daughter also has a number of food allergies so wanted to give you a bit of a cyber 'I know how you feel' support - you are not alone with all of this. Hopefully someone who actually KNOWS something will be along in a minute to help.

Oh thank you! How did they diagnosis it? The initial thought was that this was transient synovitis but it's not going away. He doesn't have a diagnosis yet though. He had a x-ray, ultrasound and blood tests a couple of weeks ago - all came back ok.

Thanks again.

Hi thar

Just to reiterate about the STEPS charity website - loads of information there. My dd has had some ortho surgery over the last couple of years. She takes a combo of co-codamol and voltarol for her pain. Would voltarol cause the same problems as ibuprofen allergy-wise?

Hee hee smb, you made me laugh.

I am ashamed to admit I can't really find my way around the STEPS site and don't think we're quite there yet. It could be that all this worry is for nothing - the transient synovitis could just be taking its time. Can that be hope rather than denial for now? ;)

Not sure about the voltarol and will ask the guy on Tuesday. In the meantime, I've gotten him Singulair - it works very well at containing his asthma.

Sausageandmash - good luck to your daughter. I've just been googling avascular necrosis and it doesn't sound good (! understatement).

Thanks again. I'm swinging between being wildly worried and thinking I'm completely overreacting. Roll on Tuesday.

It's here if you do need it Hopefully not, fingers crossed.

I googled this a while ago because ds was having hip problems. I thought an xray was used to diagnose the condition. Am now worried I am too sanguine about ds (also had a clear xray).

My brother was diagnosed with Perthes aged 4, and wore a calliper for a year or so...thank god I don't think they do that anymore!!

Anyway, he was told when he was about 12 that he would probably need a hip replacement once he reached adulthood. He played lots of football and was a very active child and adult. He is now 29 and has no problems - sometimes when he is run down, or being playing too much footy, it can get achey I think.

I don't know anything more, I'm afraid.

Oh excellent, teuch, that's great to read.

FallenMadonna, with my son they're considering other stuff because the limp and pain haven't gotten better like they thought they should. His GP has talked to the surgeon and he's said that it could be serious but it's not über urgent if that makes sense.

SMB - thanks again! Why did your daughter need surgery?

Have just realised that no matter what (if anything) is wrong, he'll still need to eat dinner tonight. Ack! Must do something about that...

lol - yes it's a bit of a bind to have to go make dinner. I've given dh instructions

dd had one leg longer than the other. She had a clot as a baby and it stopped the leg growing for a while. The surgery was to even her up. She is most pleased with the result!

Have they pinned your ds's problem down to the hip? They can have referred pain from other skeletal problems. dd had hip and back pain from her leg length difference.

hi there,

sarah muirhead allwood is a good hip specialist her details will be on drfoster.co.uk

Good to read she's pleased with the result! I hope her hips grow well from here on out.

What did you do about 2nd opinions? I was told a few years ago by a consultant I was seeing at the time (in a medical capacity) that I should always get a 2nd opinion for things. Do you do this? If so, how do you put it to the original consultant?

I have to admit to taking my son initially to a very local osteopath who I see when I hurt my legs/knees jogging (so fairly often... you think I'd be in better shape actually, but no.) I thought it was that mysterious guy groin-pull thing. He looked at the leg length and I think my son's gp did too.

Thinking about it, I lied earlier - the ultrasound didn't come back clear. The radiologist said "I can see it hurts a lot" as the, erm, stuff around the joint was quite inflamed. But it wasn't an infection or broken or anything which is why I think of it as coming back ok if that makes any sense. Also, my husband was out of town, I have no family here and the babysitter's son was due in for heart surgery* the next day so I was terrified they were going to keep keep my ds1 in overnight and I'd have to find someone to watch ds2 - I really just remember the relief that it was not too bad. Glad I thought of that now, would have looked an idiot at the drs next week!

Thanks for the recommendation suey2. Does she do children too?

Anyway, I'm not quite sure who designed this "need to eat 3x a day" thing, I'd like to have a word and see if we could get it changed to once a week. But there's bacon in the fridge. Can't go wrong with that.

*He's ok and it was successful.

I think things have come a long way in the management of Perthes. My father was diagnosed with it when he was 5 and the treatment then was surgery or one years' bedrest. My grandparents chose the latter and it worked (fairly drastic though?) This was 1950 though! He's now in his 60s and still no hip replacement.

When I trained as a physio, immobilisation of the hip with some sort of plaster brace was the treatment of choice. Now they believe that most cases will recover without intervention, infinitely preferable to either of the above.

It sounds like your ds has had all the right investigations so far. Hope he gets sorted soon

Thar - we did get a second opinion on dd's legs but only because our original ortho was at Birmingham Children's (where dd is treated for her cardiac stuff ) and the travelling was a pain. I asked him what he thought of a paeds ortho at our local hospital and he was most complimentary so we changed.

We see John Dwyer. You're entitled to a second opinion if you want one. You can just get your GP to refer you to someone else. The only problem is all NHS orthos seem to have huge waiting lists. Unless you can go private for your consult.

Hope you get somewhere on Tuesday.

Thanks. That's very reassuring northender!

smbk (noticed I forgot the k earlier, oops) - thanks. We're private, so that should help getting an appointment for a second opinion if we need one. The babysitter's son is 29 and she doesn't use the internet at all! Crazy, I tell you. But she did warn me about looking stuff up and getting all nervous about it and his problems put my son's into perspective. And it reminds me that I'll never stop being a mother to my sons.

Did you find this thread, TharSheBlows?

Good luck tomorrow, anyway.

Teaching hopsitals are generaly strong bets for consultants.

Oh thanks Blu - I've bookmarked that thread now and will read more closely when I have the chance later. Can I CAT you about details? Actually, I'll do that now.

Hi, we are in the same position with our 9yr old ds.He has had an mri and we are going to see the consultant on Thurs.Where are you in the uk?I have lots of knowledge of this awful condition after a couple of months of seaching.There is a perthes org in the uk but there is the MOST fantastic and supportive online group based in the usa - basically yu need an introduction to join,so,google perthesNZ and you will come to a website run by a great lady called Donna,both her kids have Perthes and she had it as a child.Email her directly and explain(the email is on her site)she will put ypu in touch with Barb who will invite you to her grp.Sounds convuluted but took me 48hrs, and I am so glad i did.An absolute mine of info and support from the usa,uk,NZ and Aus.Lots of mums of older children too,which is important.Info on all sorts of treatments,advice on pain managemt etc. Anyway,good vibes from us to you as it's really rubbish and people don't quite get the enormous implications on yr child this condition has. R x

Oh,just bumping for the eve.......Also,we were told not to use Ibuprofen as it's not gd for stomchs long term and also inhibits bone growth.(fine for most,but obvs not in the case of perthes)

Thanks interstellar! I've put my update on your thread to keep all the experiences together. I hope that's ok...

How is it going with your son?

He's now had an mri but no news. Tried to get something out of the very nice radiologist (is that what they're called?) but no luck. The iamges are cool - they gave me a cd with them on then and I've been scouring for signs of, erm, whatever. If I just knew what I was looking for... sigh.

The consultant is supposed to ring me early next week with the results.

Interstellar - how's it going with you?

The consultant rang today and said that the diagnosis was Perthes, although there's no fracture in the femoral head (phew). He's to continue with physiotherapy (well, he hasn't started yet, but continue with that plan) and no running around or anything with impact. Walking and swimming are fine - I have asked his secretary about biking and she'll get back to me. Have a feeling that's not going to be allowed though. We have an appointment in a month and depending on the results of the x-rays then, we will discuss whether he needs surgery or not. The consultant said he'll have good and bad days but if it starts really hurting past what's normal to see him immediately because the femoral head might have collapsed.

Poor guy is taking it pretty well, except when he realised he probably couldn't do his week away at Outward Bound with his class this summer. He's been up and down though. I spoke with his teacher this afternoon and she's going to set up stuff for him to do whilst the other children have PE and Games - to keep his spirits up as much as anything else. His school is absolutely lovely and will work with me - that's one thing I don't have to worry about, luckily.

So bad news but not the worst by any means.

Hi there tharsheblows!

Someone told me abotu your thread so I searched for it - hope you see it!

My dd2, who is 4 and a half, has also just ben diagnosed with Perthes. She already has obvious degeneration and fracture of her femoral head and total involvement, which is most common in girls, I hear. I feel crap as I have spend 3 months telling her to get a move on and stop moaning, and now I find that she is really unwell.

The consultant said we are looking at 18 months of restriction of activity like NO running, jumping and limited walking (we have an OT referral to hopefully get a maxi buggy and possibly a trike for her) though she can swim as much as posssible (he said 3-4 swimming sessions a week) and ride her bike when we can. She will have to be on restriction of activity when she starts school - no PE and either supervision or staying in at lunch/breaks come August.

He said that the latest theory is that Perthes is caused by delayed bone age, which for us fits with dd2 being smaller in every way than her older siblings. They are researching this at Yorkhill in Glasgow (our hospital, which is pretty much the UK centre for Perthes as it is more common in Scotland for some reason) and will be following her up for this until she is 18.

The hardest thing for me is that dd2 is in a lot of pain on a regular basis but they said at the hospital that painkillers are counerproductive as they encourage movement when the joint needs to rest. Pain is a warning - and when it hurts, out consultant recommends rest rather that painkillers, except at night. SO I had a weeping, hurting, crying dd today, that I wasnt supposed to give any treatmetn to (and an hour of nintendo ds connecting with very-bad-at-any-Mario-game dod seemto help!) The main issue for her is that we live in a lovely quiet cul-de-sac with many kids and she is used to running about with them, and now cant.

It woudl be good to hear from you. I know your ds is a lot older but it is nice to be in touch with others inthe same situation, even though at 10 it is a different management issue.

Take care of yourself - I already realise it is taking its toll on me, mentally, though its bothing to do with me, not my fault!

Hi Weegiemum!

Yep, we're about the same. No running, jumping, etc - ours said no cycling either but because of abrupt stops that would impact the leg and falling (I think that's sensible given my son...). Walking is fine though. It's in the early stages or a mild case, I think. And I'm supposed to take him swimming a lot, too. Not looking forward to that - I hate going to indoor pools, sigh. Roll on summer.

He's just started physio and I'm thrilled with his physiotherapist and think my son has a crush on her! My son is tall for his age and 10 years old but has had a lot of health problems (seemingly unrelated but who knows?). We're going back in a month to see how it's progressed and will talk about surgery then - because he's 10 it's a strong possibility.

at the hospital and consultant about the painkillers. Ours has said to give them as needed. (That's just fyi - think each child/case is different obviously but wanted you to know that some consultants don't say that in case you have second thoughts about that advice!) Keeping him off his hip and giving him meds aren't mutually exclusive.

Yes, the hardest part will be not running around with the other kids. My son's school has been absolutely fantastic - reduced me to tears the other day with sheer niceness. Luckily he loves videogames! And tv, too. Good thing I had the foresight to let him get addicted

Good luck. I'm not on here a lot at the moment, so apologies in advance if it takes a while for a reply.

ps - don't feel guilty about ignoring it for a bit. I did that too. No one ever told me a dodgy hip could be so serious! I thought it was a groin pull or something.

Thanks fo rreplying.

We will cope - but it isnt going to be easy!