Aww crap, crappy news about dd's hip.

[weegiemum]

My dd2 is 6.9 and has Perthes Disease, a degeneration of the bone in her hip. Since she was just 4 she has been off her feet, using a wheelchair and buggy, in pain, limping etc.

6 months ago we had a fabulous appointment where we were told she could run again and she has been doing so. Still not allowed to jump.

Today we were back at the hospital and its degenerated again - for no good reason. The hip joint is healing out of shape and they are now talking about possible reconstructive surgery.

It had been so good last time that she had convinced herself that the doctor would say she could jump and so she could start gymnastic classes but that's now unlikely to happen for at least 2 years.

Dd2 is gutted, I'm gutted, dh is gutted. I know a lot of kids have it a lot worse but this is very hard going for her and we had so hoped that things would be better rather than facing surgery/plasters/traction etc.

Crap!

oh no :( I'm sorry it's not good news

Sorry to hear that.

I know - she tries soooooo hard with not jumping - so there's no trampolining on the 300 or so that her friends and family have, no rope skipping (currently very popular with her class in the playground), no gymnastics or dancing or anything like that!

There's only so many times I feel I can say "oh no sweetie, you can't go to ballet classes, here, lets teach you to knit instead".

She can swim like a fish and is learning to dive properly - she's like a wee dolphin actually - there's not that many times you can watch a 6 year old swim 20 lengths!

But she did get a consolation prize today - her violin lessons start next week so we went to buy her violin after the hospital and I think I am going to live to regret this one!!

Oh Weegiemum I'm so sorry to hear that. It is indeed crap and so hard for your DD who sounds lovely.

My dd is indeed fabulous! But very frustrated, poor wee thing!

I know its not life threatening, she's not life limited, when she is a grown-up she will be fine. Its congenital but not genetic so her children won't get it.

She has become a 6 year old disability rights campaigner - after a little old lady said to her "what is a big girl like you doing in a pushchair?" she explained and the woman walked off without replying to her! As the woman was half-way across the pedestrian crossing dd2 shouted "didn't you hear me!!!!" She is a star. She has asked people to move on buses for other people's wheelchairs!!

I'm so sad for her - she has wanted to do ballet and gymnastics since she was tiny, but as soon as she hit the age she was allowed to, her hip caved in, she started to limp and the perthes was diagnosed!

She is cool! Please tell her this!

Weegiemum I just wanted to say that I'm sorry to hear that your DD's Perthes has got worse, my DS has it too, so I totally understand how you are feeling. My DS (who will be 6 in November) was diagnosed back in June and I cannot believe how it has changed his life. As you have said, I know it's not life-threatening or life-limiting but it is definitely life-changing and just seems to rob them of their child-hood to such a huge extent. The restriction on activities, not being able to join in at PE or in the playground or on bouncy castles and at parties etc etc...it's all so hard...and goes on for SUCH a long time! My son has full femoral head involvement and what's left of the femoral head is becoming uncontained so they are now planning on surgery in an attempt to get it back into the correct position before the bone hopefully attempts to do some regrowth. My son was due to go for an arthrogram on 9th September so that the surgeon could get a closer look at the joint and plan exactly which type of surgery he will perform (whether it's a pelvic osteotomy or a femoral osteotomy). BUt then to add insult to injury, at the pre-admission assessment to make sure he was ok for the general anaesthetic they discovered he has a heart murmur so everything's been postponed and they've referred us to a heart specialist to check it out! It all feels a bit never-ending doesn't it! Perthes is such a horrible, unfair condition (but I suppose any illness is!) and the fact that the timescales involved are so vague and it can go on for years and years makes it so hard on both the child involved and the rest of the family (especially other siblings whose activities also get restricted to a certain extent because it's hard to plan holidays and family days out etc when you ahve one child who's not allowed to run/jump/climb etc etc!). It's not even as though the surgery is any guarantee of a better eventual outcome! If the surgery was a quick-fix that would be great, but my son could go through that brutal surgery and the 3 months in plaster and the tough recovery and re-learning to walk etc and have no real improvement and still end up with life-long hip pain and early arthritis! Great! It all seems so unfair doesn't it! I wish you and your daughter all the best and hope that whatever course of treatment she ends up with (surgery/traction etc) really helps and that you can soon see a light at the end of the tunnel.

weegiemum and jellybelly, DC had major hip surgery at 10 (not Perthes, but very similar) with pinning and plating. He also had a possible heart murmur and has Type I diabetes, both of which complicate the surgery and anaesthetic.

No running or jumping for 2+years, long recovery period from the surgery. But, 3 years on he now plays football, tennis and badminton competitively.

There is light at the end of the tunnel, I promise.

mattellie, thanks for the encouraging post, I've been assuming that the Perthes and the surgery will mean that my DS will never freally participate properly in sports, but maybe life can be fairly normal after all this. It seems like a long way off at the moment though! Out of interest what did he have if it wasn't Perthes? Was it a slipped femoral epiphysis? Also, after the surgery and the initial recovery period did your son have physiotherapy for long? Sorry weegiemum, this is your thread! It's just good to hear about other positive experiences of this sort of thing when everything seems so bleak!!

Good family friend who had Perthes surgery about 2-3 years ago is now among the top 20 or so 100 metre runners in the UK for his age group. And he does long jump, which must be just about the most jarring impact on your hips that I can imagine, so it?s possible for the surgery to lead to a completely normal life.

DS had about 6 months of physio ? ironically I am a physio but we decided to send him to someone else so we could separate the ?bossy physio causing pain? from ?the supportive mum? roles DS now does sport every day with no hip problems at all.