Hi there
Unfortunately I'm subscribing here as DD was today diagnosed by US with an underdeveloped left joint which means she is going to be fitted with a brace . I've booked into see the GP again tomorrow to work out what we do from here to get her fitted with one. TBH I know very little about it although I have a friend whose DS has just had his removed after 10 weeks.
I'm shocked as I thought it was fairly rare and didn't think DD would have it even though both the MACH nurse at 4 week visit picked up uneven creases, and the GP at the 6 week visit thought it was worth a scan. DH seems quite pragmatic about it as he wants her to be a sporting star in the future (we are both sporty), but all I can think is my poor poppet isn't going to have baths, which she loves, and how unattractive the braces are and that she may fidget or be distressed by it as she is such an active bub.
Milly5 I also have similar questions concerns you raised above, I look forward to being able to share and learn with you all here.
Your DD is the same age as my DD was when she was diagnosed. Each case is different though - some bubs can still have their baths, it all depends on how long the specialists want the baby in the brace. Mine was 24/7 for the first four weeks. They do get used to it very quickly, far more than us mums do. My DD's story is a long one - the short of it is both of her hips were really really bad, she needed surgery and then another brace to follow it. It started at 7 weeks, finished at 11 months. But even after all of that, she can walk and is borderline running at 18 months old. So your DD will be a sports star one day, no worries about that! I had great faith in my specialist, even though I wanted to hit him on occassions, and I think that made a massive difference for me.
Thanks for your reply PacRakMG. What a tough experience you went through and I'm glad to here your DD is now doing brilliantly.
I didn't realise that bubs may be able to have a bath. I guess I'll find out more including how bad the problem is tomorrow. So far I've just been through my GP, I'm not sure whether they will send me to a Paed or through the Public Hospital where I had DD.
So I guess DD will be going into a larger size clothes sooner than we expected, and looking on the bright side she has some cute 00's to try out quicker. Also an excuse to go shopping for her as I think she (or her mum!) will deserve that treat.
Its great to have your experience and advice on here
Milly5 - curash powder is what I used and worked wonders behind the knees. Did they tell you to wipe and dry behind the knees each nappy change so that no dirt gets stuck behind the knees and it doesn't get sweaty. They say not to put powder but I found it worked the best because it would soak up any sweat.
Hi lovely Mums, I didn't realize another thread had started! When both little ones are in bed I'm going to read all your posts I just had to jump on and share again how wonderful Olivia's apt at the RCH went yesterday Her u/s showed her hips were basically normal looking and we got to give her dennis browne bar back, woohoo! She has to have an x-ray when she turns 6 months and another one when she starts walking but they seemed really happy with the results. Has anyone heard or had their little one come out of their harness/brace at Olivia's age (17wks) and how did their follow up x-ray's go as they got older?
Bridie why don't they want you to use powder of any type?
Liddy that is great news for your DD! I presume a dennis browne is a type of brace?
Maybe one of you can decipher DD's scan report?
"There is moderate displaysia of the left hip. There is only a rudimentary acetabular development and femoral head coverage measures approximately 30%. On the right hand side though femoral head coverage measures between 50 and 60% there are some mild changes with rounding of the acetabular margin and laxity of the femoral head under stress."
Does that mean anything to anyone? I just rang the hospital and they said they would 'triage' her case and if its non urgent there is a 3-6 month wait to see her! I think I'm going to have to find a private Paed before that to get things moving along.
Dusty - I have no idea on all the medical terms, never did, but I know someone will be able to help. Powder is a bit of a no no because the tiny little grains can get into casts and under braces, making bubs very uncomfortable and possibly creating sores. We used powder on our cast, to try and kill off the smell, but none on her skin, but we did in the first brace and it caused her no grief. We were asked if we wanted to go public or private - we went private and didn't have to wait. If you're in Melbourne, I can PM you our surgeon's details. We loved him.
Dusty - Are you in Melbourne by any chance? We have gone private as we didn't want any delay (our little girl was already 11 months when diagnosed). We have been happy with our orthopedic specialist and hospital so far. We had an appointment within a week of our X-ray and surgery scheduled for 2 weeks later. DD then caught a cold a few days before her surgery date and we were easily rescheduled for another two weeks on, and then another two weeks again when her cold lingered. She finally had her open reduction on Sept 8th and has been in her cast 5 weeks tomorrow with a cast change in one week and then six more weeks in the new cast.
A quick update on our X-ray last week - It was all good news so far thankfully. The surgeon was happy with the bone development that had started to occur over the previous 4 weeks. He mentioned that when they opened her hip joint up for surgery, he found that the acetabulam was actually slightly convex in shape, rather than concave as it should be. He described it as a bit like trying to balance a ball (the head of the femur) on another ball (the acetabulam) and hoping that it stayed there. I think he was quite relieved to see some better shape starting to form. I am so glad that he didn't mention any of that immediately after the surgery as I would have spent the last 4 weeks stressing that her hip would pop back out any time she moved. DD jumps around inside her cast like a little jumping bean when she gets excited and I would have been trying to stop her (as if I would have had any luck with that...lol...)
I had to call the surgeon's office today as I am seeing some worrying skin breakdown in some hard to see places in DD's cast. There is also a spot towards the top of her upper thigh that appears to almost be cutting in to her and there is what looks like dried blood on the cotton padding. I spoke to the orthopedics appliances person in detail (who's little girl was actually in a spica cast due to DDH as a baby too) and she has said just to keep a close eye on the problem areas and try to "limp through" to the cast change next week. DD is not showing any signs of discomfort or infection and is as happy as ever, so it may just look worse than it is. Short of taking the cast off early, there really isn't any other way to asses the problem areas. Of course, any sign of discomfort or a change in behaviour or demeanor and I will need to call them back immediately.
Trying to keep the cast dry inside is proving to be a losing battle between DD sweating quite a bit and some urine that is escaping from I have no idea where. I have her so carefully nappied and cotton wooled and padded up but still she gets damp. It's driving me crazy!! We invested in a more powerful hair dryer today with a good cool shot function...I swear this dryer nearly blew DD off the bed...lol... I just keep telling myself that I will eventually outwit this cast!!!
dusty - i have no idea what that means, but if i had to wait, i would go private (if you have the finances)
yay liddy!!! great news!
we have some good news -
we have some progress! the harness is working fab, and spec is really pleased!
the rash in her skin fold is also clearing (thanks for the tips about daktozin and the powdewr too).
i also have a tip to offer - aqueous cream has worked a treat on the dry skin under her harness, i can just get my fingers under (except for her legs) when she is asleep, and the aqueous cream has really soaked in and moisturised her skin
cheerio for now, i seem to only get to BB once per week, so have a good week everyone!
I have just read this most recent thread and wanted to join in.
I have two girls who have just been diagnosed with DDH in both hips. My oldest is far worse on her right side and will require 3 lots of surgery. My youngest is 16 weeks and has been in a DB Bar for just under a week. DD1 was diagnosed late at 2 and a quarter. It was only once she started walking that our MCHN agreed there was something wrong (I had my concerns as I thought I could feel a click/clunk).
There is no family history of hip dysplasia, nor where the girls Breech. I guess now with DD1 and DD2 having bilateral DDH there is a family history (they are the beginning).
The things I would notice in DD1 (I had not noticed anything for DD2):
A click when I scooped my hand under her bottom to put a nappy under or when I picked her up. I think she was about 3 months when I started noticing this.
*mess* would be only in one leg crease and not the other, although her creases appeared to be even.
Once she started cruising she would kick her right leg out when it led, but not the left.
She took months to go from cruising to walking independently and would not walk holding our hand/s unlike the other kids.
She often chose to walk on her toes.
She wouldn't climb the stairs of play equipment (other kids her age had no trouble).
When I put her in the ErgoBaby one leg would wrap further around me than the other, even when I was certain her bottom was centered.
Most things I have realised were associated and signs on looking back. Once two health nurses a paediatrician and a GP had all said she was fine just from external checks I stopped asking if something was wrong. I wish I hadn't, but I can't go back now.
I'm so glad I can share this tough journey with other people who are going through the same thing.
Hi Ladies
We've just been told my little man Jack has moderate hip dysplasia in the right hip. It was actually picked up by the physio who is treating his torticollis and told us to ask the paed when we saw him at his next appt for an US script. I'm figuring since most of the HD babies are girls that it's unusual for a boy to have it? I can only imagine it's because he's so tall! He was pretty squished and had a very difficult birth, so he's a got a few issues with his body movement!!! Do you mind if I ask: What are the biggest 'everyday' probs you've come across while bubs has been in a harness/brace, and what did you do to fix it?
If you've got the time!!!
Cheers
K x
Last edited by krystals; November 13th, 2010 at 12:13 PM.
: proper post!!!
. I've booked into see the GP again tomorrow to work out what we do from here to get her fitted with one. TBH I know very little about it although I have a friend whose DS has just had his removed after 10 weeks.
in the future (we are both sporty), but all I can think is my poor poppet isn't going to have baths, which she loves, and how unattractive the braces are and that she may fidget or be distressed by it as she is such an active bub.
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