[Flaps]

I have'nt been on EB in a looong time but the lovely Lambchop lead me back
My daughter wore a hip brace when she was born and we were told she was fixed at 12 months......fast forward about 6 years and the complaints of pains began. It has been a long journey to her re diagnosis as we were brushed off by quite a few docs along the way because her hips on xray 'appear' to be within normal range.
My daughter now walks with a limp most days-only slightly but it sucks that she's in enough pain to make her limp, and it sucks that she was told more than once 'it's nothing.
She was diagnosed a few weeks after the death of a little girl at school. The little girl died of lymphoma-at dd's first appoinment the doctors said in front of her "we need to make sure this is'nt cancer" and so began poor dd's second problem-my already anxious child slowly developed post traumatic stress disorder. The ptsd came on so slowly and gradually that she was in quite a mess by the time we realised she had a problem.

Keen to hear anyones journey with hip dysplasia in an older child.

[LambChop]

Yay Welcome back, although sorry its to this section.

[HoneyMurcott]

Hi Sarah,

Sorry you have returned to EB under such circumstances.

Whilst not in quite the same situation our DD is nearly 4.5 years and has what is termed 'residual hip dysplasia'. She was diagnosed at 11 weeks - series of bracing until hips were declared 'normal' at 9 months. However the orthopaedic team at Westmead decided to not discharge her because they'd noted her extreme hyper mobility and were concerned that her hip development may not continue to be normal. They were right.

So we are now in the situation of hips that are 'not quite right'. Her last x-ray was at 3 years. She is due for her next review later this year when she is 5 years. At each review they determine whether they think surgery is necessary or whether they will continue to watch her progress. It's a waiting game and I expect this will continue until she is fully grown.

Can I ask where you are and which hospital is treating your DD? Does she have any other problems such as hyper mobile joints? Have you seen your GP about a mental health plan and referral to a psychologist for the PTSD? If she's going to need surgery you'll need to be on top of that first.

[Bethani]

Hi Flaps, sorry you are dealing with this. I haven't found too many people who are dealing with hip dysplasia in an older child - hopefully your post brings a few more out.

I have a 10yo DD who was in a spica then a brace from 4 1/2 months until 18 months for hip dysplasia. She now has what her doctor calls 'uncovered hips' (hips don't cover the top of the thigh bone as they did not develop correctly), which results in severe intoeing, hypermobility, some balance issues and we have been warned that it may cause pain in the future. When she gets tired from a long day walking, the intoeing gets worse and she can get a limp in one leg. She will need an operation (osteotomy) on both hips in a few years.

I thought it was all over when she came out of the brace (besides the regular xrays), so it was hard to hear last year that she will need an operation and that it isn't all over.

[cheekymonkeysmum]

Hi

Welcome back so sorry to hear about your DD.

I don't know if this is any help but i was born with a hip Dysplasia and still have it at 25 yrs.

Growing up i did have to be careful but not to much i still played with the other kids as normal though i never got to wear a brace (not sure why just didn't).
Like if i ran my hips would be in pain for days on end same thing with jumping so a lot of sports were out of the picture for me i ended up swimming and loved it.

Now at 25 my hips are in tremendous pain 98% of the time.
I will be getting either a double hip replacement or one at a time very soon but since i am with the public system i have to be on a waiting list.

Also sometimes stairs get to much for me (now) and i have to walk the long way around which sometime also hurts more as i can't be on my legs for too long otherwise i will be in pain for a couple of days.

I also walk with a limp 100% of the time i do get funny looks sometimes but just ignore them.

With mine i don't have any cartilage in my hips and my hips are basically just bone on bone all the time and they get dislocated so much it becoming the norm for me.

When i was younger (around the age of 5-8,9) i had to go to Westmead children's hospital (in sydney) once year for check ups and x-rays but that really didn't eventuate to anything the Doctors just told me that i would need a hip replacement when i am older.

But i guess at the end of the day there is no point crying over it i have to keep going (especially with a very active 2.6 yr old).

Good luck with it all i could only imagine how scary it is for you and your DD.

[Flaps]

Thanks for your replies.
Honeymurcott, yes we have a mental health plan though we very quickly used up our 10 visits- because it's a trauma we may get an extra 6. She is on medication for the anxiety as the psychologist wasn't getting anywhere initially as she was just so stressed
We are in Melb and will be under RCH as of next week- they couldn't fit us in originally so sent us to Sunshine.
I do believe with hip dysplasia in older kids if there is hip dysplasia but no pain they do nothing but watch.

Bethany is intoeing walking with toes inwards? My dd walks like a duck- toes outwards and the more tired the more her toes go out. She's not overly clumsy infact I would say not clumsy at all.
Cheeky monkeysmum ,if Charlotte overdoes it she is also in pain for days- on a bad day even swimming and turning over in bed hurts.The surgeon we are seeing specializes in hip preservation and of the many patients he has treated very few have had to go on and have total hip replacement. Charlotte doesn't have any signs of arthritis yet which is great.
You poor thing it must be so hard chasing a little one when you have hip dysplasia.
Charlotte has never mentioned that she hates her limp and we just kind of take it as part of her It would never dawn on me that someone was looking at her because of her limp- the only time I ever notice it is when she goes to the loo at night and I 'hear' her limp.

We are lucky to live in the age we do where hopefully something can be done to fix her.
Thanks again for the welcome...will be nice to have somewhere t come and offload some steam

[OLEM]

Hi Sarah, my daughter wasn't diagnosed until 2 1/4. At 2 1/2 she had bilateral open reduction and then at 3 and 3 1/4 she had a salter osteotomy performed on each hip.

At the time of her diagnosis her 15 week old sister was also diagnosed. Neither of my girls had obvious external symptoms. Our surgeon sent DD2 for an x-ray "just in case", as he was convinced she was fine.

There is a forum in this section for DDH, although it can be very quiet. If you are on FB you are welcome to join this group...
DDH Support on facebook

There are quite a few families with an older child going through treatment. When I say older I mean 4, 5 and 9 years plus.

PM me if you want to chat.
Sophie

This post has been edited by OLEM: 17/03/2012, 04:03 PM

[Flaps]

Thanks Sophie, I'm already a member of that site!