Perthes Disease advice and reassurance

[Flubberyseal]

Dd aged 8 has had a worsening limp for some weeks. She has also had intermittent pain and stiffness in lower back and upper left leg. She went to the hospital for an X-ray and a fortnight ago we were given the results along with a diagnosis of Perthes disease. Now we are faced with waiting for her to see a consultant, with her limp and spine alignment getting worse each day.

Was wondering if anyone else has a child with Perthes disease and can give any advice? or any adults with the same condition and how it was managed? TIA

Dh had it as a child aged about 5 and was in calipers and a wheelchair for a year. He's 48 now and has no lasting problems.

A boy in ds' class has / had it last year in year 1 and spent a couple of weeks in traction in hospital and then a couple of weeks recovering. He was playing football with ds this morning and his dad said he was fine now (we were chatting about dh having had it just today weirdly)

Thanks for the reply. Those stories sound positive in the long term. It is difficult waiting for the appointment to come through, as we don’t want dd to come to further damage whilst waiting for treatment. She is a very active child and although she has stopped PE at school, gymnastics and generally running and jumping, I worry that she might inadvertently make her hip worse

Dd2 was diagnosed age 4. She was put on strict rest, very little weight bearing, she had a wheelchair at school and major buggy at home. she used to stand at the table and run outside - for ages I think she thought her name was Rachel-No as that's what I was always saying.

She had total involvement of her femur head, one of the most complete cases her consultant had seen. We were warned about splinting, braces and surgery.

I was incredibly strict with her and school were great about the wheelchair. She missed out on everything except swimming and she's still a brilliant swimmer.

I'm the West Of Scotland there's more Perthes than anywhere else (globally I think) and they have pioneered rest over splinting and/or surgery. Dd2 has a scan underGA (because dye injection is painful) at age 10 which showed almost complete regeneration and she went to annual appointments with full freedom of movement.

Her annual appointment was 2 weeks ago and she was discharged (she's 15.6). Yes, she'll probably need a hip replacement in her 40s but we couldn't be more pleased with this.

Where are you, if you don't mind me asking?

Great news that your daughter has been discharged, weegiemum. I’ve read that the younger it is diagnosed, the better the long term prognosis. My daughter is sort of in the middle age range, so I’m hoping that she will be able to make a full (if not speedy) recovery. What worries me though, is how much her walking has deteriorated in the last fortnight. Her left leg Is turning in and it actually looks like one leg is shorter than the other. It’s hurting her to walk up and down stairs so dh is carrying her up to bed and down in the morning.

Yes, there does seem to be huge variations to treatment depending on where you live. We are on the east coast - Norfolk.

Hi @Flubberyseal
Sorry I missed your post earlier. Do you have a date for your appointment yet?

My DS was diagnosed with Perthes 3 years ago at the age of 8.

I think one of the issues with it is that it’s relatively rare, and the outcome depends on a number of factors, so there doesn’t seem to be a consensus among the medical professionals about how to treat it best. There’s been a major study ongoing by BOSS to try to assess the outcomes from different approaches but I don’t think the results of that will be known for some time.

We were told that 3 things affect how “good” the outcome will be when the head of the femur grows back: age at diagnosis, how much of the femoral head is affected, and how restricted the movement is. DS scored badly on all 3!

We opted for the surgery route, and he had a femoral osteotomy just over 2 years ago (that’s where they cut the femur and position the head more firmly in the socket). I think that was the right decision but I’ll never know!
The blessing is that he has suffered very little pain, and became very fast on his crutches!
However, he ended up with his leg angled inwards, and when the bone grew back there was quite a bit of “excess”.
So last week he had a second femoral osteotomy and some of the excess bone removed. Now we’re just waiting to see how he recovers!

Hi Toofarout, thanks for your reply.

Actually, we had our appointment today, so am feeling more optimistic. She has a wheelchair to use and is going to be doing daily physio. I would have preferred crutches, as at least that way she could still have remained more active, but the paediatrician didn’t recommend. She will be reviewed again in 8 weeks and we will discuss whether surgery is the best option. Did your ds have physio before you opted for surgery? If she is operated on, it will be a femoral osteotomy like your ds.

It’s very unlucky for your ds that he is having to have another operation - that must be frustrating for him and you. Can you tell me what the recovery period is like? I guess he must have been in hospital at least a week or two and then had a lengthy recovery at home?

Problem with my dd is that she is so active -always moving jumping and dancing and she is finding it difficult to curb that. She has at least been told that she can carry on horse riding, as that is her absolute passion.

Best of luck to your ds with his recovery x

We moved to surgery quite quickly- the surgeon was keen to get it done before the femoral head collapsed, but that was very much driven by the X rays so your DD’s treatment may be different. (And each surgeon has their own approach!)

For the first operation we were told 4 - 6 days in hospital and 4 - 6 weeks off school. DS was on crutches so he was allowed to leave hospital once the physio was convinced he could get around and manage stairs, and so was only in for 3 days. Same timing this time. Then the physio slog starts ...

Because he ended up with a tilted pelvis we have had to keep him only partially weight bearing ever since, to try to limit the impact on the spine. He was able to ride his bike and is very strong on his crutches. (He was able to run without them, but I wasn’t supposed to know that!!! We turned a blind eye to a few things- it’s been a very fine line between giving him as “normal” a childhood as possible and protecting him). Hopefully this operation will have corrected that, but only time (and a lot of physio) will tell.

Hope you all get on ok. I’m glad your appointment went well- these things are always better when there’s a plan!

I have to say, your ds was a bit unlucky with timings as he won’t get long off school, due to imminent start of the Summer holidays!

If it turns out my dd needs the op, would it be ok to message you nearer the time if I think of any questions? It’s always helpful to get another parent’s perspective.

Wishing your ds a speedy recovery so he can enjoy the school holidays.

It was his choice! He is coming to the end of year 6 so there is a big trip away that he didn’t want to miss.

Yes, feel free to DM me with any questions