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DDH (clicky hip)

"developmental displacia of the hip"

has anyone else had to go through this?? they say its not very common. my dd has been in a pavlik harness to put her hips back into place as they didnt develop properly. she has been in it since she was 6 weeks old. it doesnt bother her, but was just wondering if anyone else had to deal with it all?
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  • hi,

    My little girl wears a pavlik harness, she had it on at 11 weeks old and has caused us loads of feeing problems. My little girl doesntlike having it put on after bath check up etc buyt she forgets about it once its on. We have had lots of problems andive struggled with this but we are doing ok now.

    i think my email is active if you want to email me

    Shell
  • g/c and i haven't gone through having a child with it, however I was born with clicky hips, in my case it was both, my cousin also had it, it wasn't treated the same back then, our mums were just told to keep us in double nappies so I used to have to wear two of the terry towelling nappies (afraid it was even before disposables!!) I haven't really had any major problems, however I often feel my hip 'clicking' out of place but it just 'slots' back in again, I'm afraid it's difficult to explain unless it happens to you but it's most definatley not painful, I do also have problems with my back and knees and suffered SPD with my second pregnancy, and they're not sure what caused what whether clicky hips caused my knock knees and therefore never walked properly putting pressure on my hips and back or a mixture or all individual complaints in their own right, however it doesn't affect my day to day life or stops me from doing anything, and my children have both been born clear of it, although I did have to state at some point in my antenatal appointments that there was a family history of it.
    Sorry I can't help or offer support with what you are going through now, but hopefully you will see that as long as LO is getting the correct treatment, all should be fine. Who knows how a harness may have helped me?
  • My wee girl was in a pavlik harness for 8 weeks from when she was three weeks old. She's nearly 9 months and I can hardly even remember what it was like having to deal with it though I know at the time it was really upsetting. By the time it had been off for about a week it was forgotten about! A friend of mine in her 30s had this when she was a baby and the other day was showing me all this scarring on her back because back then the harnesses had metal bits and hers hadn't been fitted properly! So our girlies had it lucky! Hope your dd is out of it soon!

    J x
  • phoebe is in her harness just at nighttime when she is sleeping now. its her cue that its time for bed! it was such a horrible thing to go through, i remember shedding alot of tears the first week she had it on but now its just part of everyday life and tbh, im worried she wont sleep properly without it on!!

    how far has your daughter got left in it now? how old is she?

    i knew i would find someone else on here, they say its not common but the number of babies at the hosptial is mad!
  • oh my god 2 replies in the time it took my to write that last post!! mad!
  • hi lucyah

    Just wanted to tell you that I'm 20 and was born with Cerebral palsy and my DDH wasnt discovered til i was 7 and because of the complications of leaving it undiagnosed so long i had a pretty major op which left me in plaster from the chest down in the middle of summer. Not nice! eventhough im in a wheelchair i still have a fantastic life and am expecting in august. Medicine has changed a lot even since i was born so I'm sure your daughter will be amazing and because she's still pretty young she'll bounce back from the treatment. I know its probably not very nice for you to have to see and live with but it really shouldnt be that traumatic for her especially in the long run.

    sorry this turned in to a bit of a ramble!

    I hope all goes well and your daughter stays a happy and healthy little girl

    Liz
  • aw thanks liz image

    hopefully my little girl has only got a few weeks left in her harness and she will be fully treated. just so glad they found it so early!
  • My lovely girl is a Phoebe too!
  • aww yayy!! image
  • The title of this post caught my eye - I was born with a clicky hip too, I had to have a big old clunky harness which was the norm at the time I think (I'm 32). I have had no probs through my life, had spd quite badly but don't know if connected.

    And I have a Phoebe too! Beautiful name isn't it, I'm so glad we chose it, she's Phoebe Isobel and is now 10 months. Her hips were scanned at 2 months old due to my history but are ok. x
  • ames you were pretty lucky considering it can be passed down in families!! my phoebe is phoebe olivia and she is 5 months :/)

    pheebs didnt have a proper disclocation, it just wansnt in the socket properly. she wasnt breech or anything, there was no reason for her to have it image
  • hey ddh mummies
    dear me i should have posted sth sooner if i knew you were all out there lol
    grace is 8 months and wore a harness from 6 weeks to 7 months so the pavlik is quite fresh in our minds! she had quite a severe case on both hips and wore the harness 23 hours a day, but because it was spotted so early, it was treated successfully by the harness, altho we did get quite close to plaster!

    have you guys found the 'steps' charity website? they are fab and there is a forum on there where people goingt hrough the same can chat and help eachother - please have a look and pass the details on to anyone else you may meet at hospitals etc, they are so helpful if you ring the number and can give grants for equipment and alsorts.

    anything you need, i htink my email is active

    jane and grace xxx
  • ddh mummies LOL!

    sounds like our daughters went through the same thing at the same age. we are still in harness for sleeping though..

    i still remember the exact moment i found out that phoebe had to wear it. i think i cried all the way home and all that night.. i felt awful.. now she has thighs like a shot putter and rolling around and trying to commando crawl and she is only 5months!! lol

    im gonna check out that steps website, thanks jane image
  • Hi Lucy,

    My Dd had a Pavlik Harness from 6.5 weeks until she was 17 weeks old (about 10 weeks in total). It was totally unexpected as she was undiagnosed breech so we hadn't even thought about the scan at 6 weeks until they mentioned it when she was born.

    It was horrible to start with and I cried buckets when I saw it - before it had even been put on. She didn't seem to mind it in the slightest - I think because she was so young so it was us as parents that worried about it and got upset by it more.

    As soon as it came off she rolled over from front to back and she is really developing well (sitting up and trying to crawl etc - she is 7 months now). Touch wood it is all 100% - we have a check up in August but they were very happy with her when she had it off so fingers crossed it's all still OK.

    Apparently it affects 1:100 babies and mostly girls - the shape of the hips / pelvis I should imagine.

    My dd had to wear it 24/7 which was tough as we couldn't bath her etc but it seems to differ around the country.

    Anyway, it is horrible but I am just so pleased they caught it when they did as I have a friend who had this missed when she was a born and 25 years later they were breaking her hips to re -pin them :\(.

    Good luck with it all - as you can see there are quite a few of us who have been through this so please do contact me or do a thread if you need any help or support.

    Take care

    xx

    [Modified by: MrsRG on April 07, 2010 09:05 PM]

  • thanks mrs rg image

    i dont understand how the treatment is different depending on where in the country you live?! my dd had to wear it 24/7 for about 6 weeks and she was then weaned off and allowed out of it 1 hour for week 1, 2 hours for week 2 etc.. really strange as i have read that alot of people are just allowed straight out of it??

    it was the nappy changing that caught me out at first, it seems impossible but i soon got used to it!! also i remember an explosive poo that went all up her back and i couldnt take her "orange" harness off to clean her properly! bet she stank!! lol!

    thanks to everyone for all your comments, im glad im not alone!!
  • Hi Lucy, I also have been trying to locate others going through this same issue. My daughter is 17weeks and is also wearing a pavlic harness ad has been for 2 weeks now...its awful as we were told that we can't remove it so means her routine of a nice bath every evening to get her settled for bed has gone completly out of the window!!!
    Its nice to know that there are others going through the same, we may need to go to surgery in the next few weeks as they haven't been able to get her hip in its socket what with her screaming and kicking, she doesn't like it at all...:cry:
    I'm really scared about the whole thing but i'm sure we will get through it....
  • hi lacy1980
    massive hugs
    please understand you are not alone
    check out the steps charity website for more support, they are really fab over there

    jane n grace 8 and a half months- pavlik from 6 weeks to 7 months bilat ddh, down to 3 monthly xrays

    message me if you like hun
  • hey lacy image

    it IS awful at first.. i remember crying all night for the first few nights.. but seriously, you both get used to it. phoebe has been in her harness for 5months now and have been gradually weaned off.

    she wasnt allowed out of it at all for the first 6 weeks, she was a stinky baby!

    how come they have only given it 2 weeks to work before suggesting surgery? i thought they would try it for 6 weeks to see if anything happened before talking about surgery!

    just think, its lucky they have picked it up before she has started crawling/walking

    i pop on here every night when phoebe is asleep, so im always here if u need to talk about it. i know how hard it is but soon it will become the norm i promise!
  • Hi Girls, I am so sorry I have taken till now to get back to you but I find it quite hard to find the time to get on here much, Tia is quite demanding at the mo...Thanks for getting back to me tho, it does help having someone to talk to who knows exactly what I am going through and isn't saying the same annoying comment "stop worrying i'm sure she will be fine!!!!"
    Anyway, Tia is now out of the harness, Consultant said its not working so we need to move on to the next stage, she is booked in for a Closed Reduction this coming Sat 8th May...i'm really nervous! They only gave it 2 weeks because they have never been able to get the hip bone in the socket, they were just hoping that if they could get it on the edge with her being in the harness that it may slip down into place...however cos this didn't happen after 2 weeks they said its wasting time and that they may have a better chance of getting it in with Tia's muscles being relaxed under general aneasthetic. They think there might be a thin curtain of tissue in the way or even a muscle, if so then we will need to arrange for a Open Reduction for when she is 6mths+...
    We have had 2 weeks break, its been great being able to bath her everyday like everything was back to normal, she has been so much happier too and sleeping so well, i'm not looking forward to next week but I am hoping that they get it in so as not have to go to the next stage...fingers crossed ah???!!!
  • lacy, I've never had a child with this issue but hopefully this will reassure you anyway! My DH was born with a dislocated hip, his mother is dense and didn't notice until he was past 8 months old, so he went straight into surgical reparation. This was 32 years ago, so surgical techniques were in no way as sophisticated as they are now, and even with that in mind, the only lasting effect has been the small scar on his hip/thigh from the surgery.

    DH is an outdoor pursuits instructor, rock climber, kayaker and regularly goes gorge scrambling. Last year we worked our way round Wales climbing mountains with our 2 year old on DH's back - believe me when I tell you that his early surgery has in no way held him back physically, he is very fit and active!

    It must be really hard to watch your child go through surgery when she is so small, but all this will be over so quickly and Tia will go from strength to strength!
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