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?
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?
0
Replies
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
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?
J x
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!
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
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!
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
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
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
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
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]
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!!
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...
I'm really scared about the whole thing but i'm sure we will get through it....
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
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!
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???!!!
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!