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...

Interested in this thread as I had treatment for Perthes as a child - 1 year bed rest! THey thought it was Perthes, though afterwards were also talking about a possible different diagnosis. I had no problems and led an active life, though now in my forties am having hip pain (arthritis.)

I am watching this thread in case anyone has any info that might be relevant for me from more up to date orthopaedic surgeons, but also to say, don't worry too much about your children. It sounds really bad to have your life restricted because of it at this age, but children are very adaptable and I don't look back on that period of my life as being particularly bad - I enjoyed all the extra fuss that I got, TBH.

Thanks redadmiral.

We're trying to revel in the unlimited swimming thing at the moment, and we're pretty glad that these days we don't have to do the whoel bed rest/plasters/splints, at least for a child of 4.

Its not just the effect on her - its the rest of the family. I dont want the others to feel left out, I dont want them to feel it is unfair if she is getting more telly/Nintendo Ds than them! I'm trying to think of many other activities I can do with her, I could knit when I was 4 and wondered about that, or a musical instrument, or maybe I am just going to have to get used to loads of sticking and cutting out etc ...

Most worried about school really. Looks like she will be unable to do PE, and probably will have to stay in for lunch/breaktimes as well. Luckily she will go to school on the bus so I wont have to take her in a buggy which could be a little embarrasing for her, I would think. I dont want her to be stigmatised/left out/have difficulty making friends because of her temporary disability.

I dont really know anything about orthopaedic surgeons, only have ever met one and he's the Glasgow specialist treating dd2. Hope you can sort the hip pain out - it seems to be a pretty much inevitable consequence of Perthes, eventually.

Yes, I did think of that afterwards. My younger sister I think had a rougher time of it than me. My parents visited every day, and she was left with neighbours or family after school. I think she felt like she didn't get much attention, and afterwards was a bit prone to overdoing the illnesses, which may or may not be related.

I was older and read a lot - I think if you can bear it reading to her is always a good thing. Sticking and cutting and lots of drawing? Sorry, not very helpful...

She was too sore for nursery this morning so we have spent about an hour and a half playing "Guess Who?" She is better at it than me .....

How are things tharsheblows?

We are waiting for the OT referral for the buggy and hope we get it soon - she is limping a lot just now and that x-ray picture of her whole femoral curve fracturing off is scarey adn always in front of my eyes.

Took her swimming this afternoon with her big brother - she loved being able to JUMP - in to the pool. And swim about a lot, and she went off to sleep easier tonight.

Do you ever feel guilty? I have realised that I spent 3 months saying "smallweegie! Hurry up! Stop being silly!" when all the time she was ill! Makes me feel crap.

She managed a whole morning at nursery today, which was good, better than previous days. Just as well, I have been missing college and stuff to be home with her or just available, which is beginning to cause problems.

Just wish they would hurry up with the buggy!

We haven't heard from the OT yet, but MIL has been able to borrow a maxi-buggy from the special school she works in - kids these days at the school all have amazing wheelchairs and the buggy hasn't been used in 5 years.

Am struggling with the pain thing - on days she doesn't move about she is fine, but some days she is crying cos it is sore - no wonder- the whole of her femoral head is fracturing off right now.

I feel crap cos I didn't notice, and feel like I have made it worse. But she is doing well now. Flip! Only 18 months of this to go

Hi - dh had Perthes when he was about 4 - so over 30 yrs ago! If I remember what he's told me, he had all sorts of splints and operations and spent about 1yr in hospital, so I'm pleased for you that the current treatment is somewhat less drastic!

However, from the age of 8 or so, he became very sporty - was a skier, played rugby etc so it certainly didn't impact too much then.

Now he's older (and a little heavier!) he does get occasional aches in hip. He doesn't do such high impact exercise anymore, but swims and cycles alot.

Glad to hear you have a buggy! I hope she's not in so much pain at the moment. Have you had another chat to the doctor about pain meds? I can't believe that they'd say to let her be in pain. I'm very lucky in that I don't have a job and the school is fantastic about it all so taking him to appointments etc isn't too bad.

My son's very lucky - the femoral head hasn't fractured and it seems mild. It's dumb luck he was diagnosed so quickly; I did leave it for a week or so but it couldn't be ignored at all as it was affecting him so much. It came on very quickly. I took him to an osteopath first and he referred me to the GP who took complete control of getting everything sorted and making sure people were taking it seriously. (I absolutely adore my son's GP.)

The physio is going well for him and he's got some strength back in the muscles. We did our first hydrotherapy session this week, too. He's walking with a cane which I gather is cooler than a crutch at his school. The warmer weather is getting hard for him with everyone in the park, but some of his friends at school do some online chess thing and he's enjoying doing that.

Know what you mean about the effect on the family. I asked the extended family to include my younger son in cards sent, etc, as he's been feeling a bit left out by this. It's hard to keep it as normal as possible - luckily I've always been scarily lax about TV and games, so that doesn't need to change too much .

Redadmiral, I can give you a recommendation for an orthopedic surgeon in London if you'd like. My husband had surgery on his foot this week for joint thingies (that's the technical term, natch ) and a Morton's neuroma.

Madamy, thanks for the info on your husband. It's always reassuring to know people who have gotten through it successfully!

Hving trouble with dd's Perthe's today!

She hasn't had pain much since we started movement restriction in May, but last night was up 4 times screaming in agony, and I have had to keep her off school (she has only been there for 2 weeks) as she was so tired she woke at 10am! I wasn't prepared to wake her after the bad night we had.

Our consultant told us there would be times when pain was worse. I suspect school are not being as good at movement restriction as I have asked them to be.

She is limping big time today.

Doctors have told us no pain releif as it will encourage her to weight bear when she shouldn't. But I gave her ibuprofen last night as she wasn't going anywhere and screaming in pain.

I don't want to keep her off school, but if she is in that much pain I cant see that I have a lot of choice!
What do the rest of you do with pain releif for your little ones?
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