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Thread: Hip Dysplaysia Support Group #3

  1. #37

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    Karma - Love your novels! Hope the next fews weeks gets much easier for you. We are all bumbling our way through our challenges, hopefully our journeys can be of help and support to each other.



    PacRakMG- Yes bring on the mandatory ultrasounds!! or train health professionals and parents better. We need a public awareness campaign or juicy spot on medical documentary about Hip Dysplasia! Inform the public I say! (i wished i was more informed five years ago). Does your DH have any hip probs apart from being extra flexible?


  2. #38

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    Hi all

    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.

  3. #39

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    Madcat - Sorry, didn't see you had posted! DH has no other signs at all of ever having hip dysplaysia. And yep, something needs to be done. How many times now, since having a baby with it, have you heard "Oh, I know so and so and their child has it". Not so uncommon as people might think. I wish I had've known about it before DD. I thought it was a things dogs were screened for, didn't know it happened to kids. Had I have known, I would've gone to RCH when DD was 2 weeks old and got the ultrasound we were asked to get. We did try at our local imaging place, but they refused, saying she was too little. But if I had persisted, who knows, maybe it wouldn't have gone on for so long. Hindsight, hey?

    Welcome OLEM. There are plenty in here to chat with, but I'm sure you'll have invaluable advice too. I often wonder if I was to have another baby down the track, if they would be diagnosed too. Please tell me it is somewhat easier second time round (well, I'm hoping my own headspace would be anyway)!

  4. #40

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    PacRakMG - I wish I could tell it was easier the second time around, but this is all new for me. We took DD1 to meet the surgeon last Thursday as she has only just been diagnosed at 2 and a 1/4 and he asked if he could check our youngest while we were there. We were then sent for an x-ray and from there straight to orthotics for the DB Bar to be fitted. It was all quite a shock as once again we were being told that DD2, like DD1 was absolutely fine. The x-ray showed that the (I don't know the correct terms or parts) angle of her hip joint was too sharp and that both her legs were off line with the potential for both to become fully dislocated (like her sisters). Neither of my girls were in a breech position nor is there a family history. My labours were fast, but I have been told that wouldn't create the problem.

  5. #41

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    Hi everyone

    I am just popping in to say hello and ask a question or two. DD2 is four weeks old and she goes in for a US on the 13th of November to check for HD, she was a breech bubba and was fully engaged prior to a CSec, we were going to attempt a VB, but in the end both her and I were not longer doing weel enough to even attempt it so she had to come out through the french doors. She was a SCN bub and her Paed checked her a couple of times after delivery and wanted her to have a US to check, he said she has a 1:3 chance of having HD, which we are seeing as a 2:3 she doesn't

    I just wanted to know what the US is like, is it similar to what we have when we are pregnant? I just like to get a bit of an idea so I know what to expect, how long does it take and what do they look for?

    Thankyou and I think you are all really amazing it must be so hard to see your little one's go through months in harnesses, surgeries etc
    Take care xxoo

  6. #42

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    Oh man, OLEC! So both at once?! Massive

    *Beema* I saw your name on the notification and actually went "NOOOOO". After everything you've been through already.... The initial ultrasound that my DD has was like our pg ones. The specialist put her on her back and splayed her legs out, like in a nappy change and then scans the hip. They used warm gel that they have for babies, in an attempt to not get them too upset and it didn't take very long. You'll probably be asked to hold her legs still so they can do it. I've got my fingers crossed that your paed is just excellent and cautious and everything is fine for Flicker.

  7. #43

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    Hi ladies,

    where does the time go?????

    dusty - we have a safensound car seat, and we put a piece of foam under the lining to bring her forward more. DD legs are out wide, so couldn't fit inside the seat, this way she sits a bit more forward/higher in the seat.

    risk factors that dd had -
    female - check
    first born - check
    family history - check (I had pelvic dysfunction - loose ligaments - during pg), DH cosin had HD
    post-date - check (6 days over)
    breech - no
    low fluid levels - no
    "compact pg" - check - I was all baby.
    Also - DD has a folded ear, another sign of being all squised up in there.

    Karma - how is yr little one doing?

    Madcat -it seems wrong that yr dtr's HD was missed. I agree, train health prof better! DD was actually examined by two nidwives before the Ob picked it up, and even afterwards, the midife could only pick it up in one hip - and she has severe - category D!!!!

    Olec - two - OMG!

    Beema - I feed DD while she has her u/s, she has even slept thru one! fingers crossed you get the all clear, but thumbs up to you ob for checking!!!

    AFM & DD - last u/s scan went well, spec very pleaed with progress so far. she has us getting u/s every three weeks to keep tabs on it. It's a long day, but worth it.

    cheerio for now

  8. #44

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    Hi again

    Thankyou PacRakMG for all the info, it is good to know what to expect, hopefully we get the all clear but will just have to wait and see and go with the flow

    Thank you Milly5 ~ hopefully I can do the same

    Looking at the list of risks I can see why DD2's Paed said we have quite a high risk....

    Female ~ yes
    First born ~ no
    Family History ~ we have a family history of hypermobility, being too flexible in the joints (3 generations at least), DD1 is hypermobile in her hips and knees
    post-date ~ no, 5 weeks prem
    breech ~ yes
    low fluid levels ~ yes, I had no AF 2 days prior to delivery
    "compact pg" ~ yes, all baby, round tight bump

    Oh well there is nothing I can do about it so we well just wait as see what the US shows in 2 weeks time.
    Thankyou again
    xxoo

  9. #45

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    Hi lovely ladies, I'm sitting here stressing out badly Our 5 month old Olivia has been out of her DB bar for about 3 weeks now because her latest u/s at the Royal Childrens showed her hips were looking heaps better (I think 65% coverage) and they said that we just have come back for a f/up x-ray mid Dec and another one when she starts walking. Long story short but we had a check up today with her paediatrician for another reason and he said her hip/s are still clicky. All my confidence has been blown to pieces! I've just left a msg for her Dr at the Childrens about whether we need to go back in sooner. Thanks for listening everyone x

  10. #46

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    Hi ladies!

    I just wanted to share our good news!

    Scan results show the right hip is now normal,
    the left hip is almost there, but not quite (an "a").
    Our next aapt is in 6 weeks (no longer every 2-3 weeks) and the harness should come off!!
    all being well, we will be having a family bath AT HOME on 16/12
    I can't wait - at her last harness change, she had skin irritation on her nipples, which now have protective dressings over them, as well as skin irritation around the where straps of her harness sit.
    6 more weeks.... 6 more weeks....

  11. #47

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    Liddy - I hope it is all good news.

    Milly5 - Roll on 6 weeks!!

  12. #48

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    Thanks PacRakMG, I heard back from Olivia's Dr and she said she's not concerned by the small clicking noise and said it's most likely soft tissue because of the increased flexibility that hip babies have. I'm officially breathing big sighs of relief tonight

    Milly5, yay for only a few more weeks of the harness!

  13. #49

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    liddy - we must have posted at almost the same time, so I missed your post till I got the notification email. Sorry it was a concern for you, but glad that your DD Dr has provided some good news.

  14. #50

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    Thanks milly5 Keep us posted on your DD's progress!

  15. #51

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    Oh Liddy that is great news I am so glad to hear that her Dr wasn't concerned

    Wooo Hooo for only a few more weeks Milly, fabulous news!!

  16. #52

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    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 01:13 PM. Reason: proper post!!!

  17. #53

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    Hi Krystals!
    Yes, girls are more common, mainly because they also have relaxin receptors, so have received all our relaxin in utero, so I am told, but boys do get it too.
    our every day problems have been:
    - holding while feeding., Are you breast feeding? because holding DD in her harness can be a bit difficult, depending on how I am sitting. I have found that it is easier to do a "twin hold" on a pillow when I am at home, and I can only feed her this way sitting on the lounge. Though when we are out, a traditional hold has to suffice. Basically all our feeds are with me sitting upright.
    - wind/colic, because DD can't bend so much or kick out her legs. We're still working on that one.
    - nappy rash, especially in the hip folds, but also under her arms (? from the harness or just getting hot?) Dakozin was recommended by one of the ladies here
    - finding clothes that fit over the harness. generally we have gone up a size or two. wondersuits are good - easy to get on and off over the harness. no pull up or elastic waist trousers.
    - nappies, having to use sposies instead of cloth
    - the car seat/capsule, because DD legs are splayed she can't sit right in as it's too deep - we took the lining out and put in piece of high density foam and then put the lining back over that.
    I think that's the main ones. I'll add some if I think of more.
    Last edited by milly5; November 16th, 2010 at 08:23 AM. Reason: added a bit

  18. #54

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    AAAHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!
    I just noticed DD is getting a bit of a flat head on one side (because of tortocollis). I can't lay her on her side because her legs are splayed so wide. I had put a rolled towel against that side, had done this a couple of days ago for the tortocollis, but she has been nuzzling against it. I have just ordered a head support, so hopefully that will help. fingers crossed!

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