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Thread: Hip Dysplaysia Support Group #3

  1. #19

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    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.



    Liddy - AWESOME!!!!!!!! What more can I say!!

  2. #20

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    Thanks hun, we are in Canberra so will try to get a Paed recommendation and go direct. I've had it with hospitals after my recent experiences.

  3. #21

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    Hi hip mums, can anyone help me out? My friends 6 wk old has both hips fully dislocated, what is the most likely treatment?

    My DD needed a closed reduction + 12 wks hip spica + 9 months brace for one hip dislocated, but this may only have been because it wasn't picked up until 6 months. Because they have picked my friends DD up so early, is a pavlik harness all they will need? Even with full dislocation? Is she likely to need surgery to relocate the hips?
    Last edited by appletree; October 11th, 2010 at 07:11 PM.

  4. #22

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    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!!!

  5. #23

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    Sorry dusty...just saw that you are in Canberra. I missed a whole page of posts...lol...

  6. #24

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    Hi Appletree - my daughter was seven weeks and went through pretty much what your DD did. She had the DB brace for 4 weeks, open reduction and cast for 5 weeks and then the rhino brace for 7 months. I don't think its an age thing, I think it depends on the severity. But for your friend, I'd be surprised if they opted to operate straight away - they'll try the brace first.

    Karma - That's great you got some good news in the x-rays! I hope DD's skin is okay

  7. #25

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    Thanks PacRakMG, i still have my fingers crossed just for a pavlik harness for her, i hated that DB brace! Her appointment is today so won't be too much longer before she knows for sure what is happening. Your poor little girl going through so much as such a tiny little thing though, how is she doing now? I look at my DD now and can't even tell that she went through all of that! She loves looking at the pictures though, and saw the article on DDH in one of the latest parenting magazines and was amazed!

    Karma- i had to giggle at the image i had of your DD jumping up and down in her spica! My DD used to do that too and it was hilarious! I love that they can still be that happy despite the great big lump around them That is brilliant news about the excellent bone development in just 4 weeks though! I hope the skin breakdown doesn't get too bad, i remember when they did cast change for my DD there was a lot of muck in there and some of the dark stuff i was suspicious of was just leftovers from the surgery. We escaped with just one small patch which needed some prescription cream to treat it by the end of it. One really weird thing though was that DD developed what looked like pubic hair! It was really odd, but must have just been where the cast was covering her and it turned the hairs a bit darker than normal as they disappeared after a couple of months! I completely freaked out of course... hahaha

  8. #26

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    Appletree - DD is fine now. She started walking at the start of September (17 months) and there is no way to tell that there was anything wrong. We don't have a follow up appointment until May. Yeah, I hear you on the DB brace. That bar!!!! GRRRRRRRRR. How old is your DD?

  9. #27

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    She is 3 1/2, she still walks with her left toes turned in a little, and watching her run is hilarious! She also sits in a W shape, but all this has been raised at each checkup and they aren't too concerned. We have been told to expect another round before she starts school, so more surgery and another 6 weeks in a spica as she still hasn't fully developed enough for them to be happy yet Fingers crossed that time on its own and continuous bouncing has played its part and we don't have to do this though.

    That bar was so horrible, i slipped down the stairs one day with her in the brace, and unfortunately broke her leg because of the bar Back into plaster for another 8 weeks, except this time it was just her leg and she could pull it off! We spent ever 2-5 days in emergency getting her re-plastered... I still have each of the casts she pulled off and she loves getting them out and telling me how she was so naughty.

  10. #28

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    hi ladies!!!

    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!

  11. #29

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    Doh! I too only just realised that we were up to page 2 of posts!

    Appletree- our newborn had both hips affected and went straight into pavlick harness.
    OMG on the fall and broken leg! that sounds like it would have been an ordeal, glad DD was OK.

    Karma - good news on the xrays! fingers crossed the cast lasts for the rest of the week!

    other news from us -
    we had physio and change of harness today -
    DD has an umbilical hernia - I did know this already, as the nurse had said, but also said that they usually repair on their own. However, physio said that they are quite common with hip dysplasia babies, as everything is "pushed up" and it is better if they are taped. Anyone else heard this?

    Physio also said that torticollis (?sp) are also quite common with HD babies (neck turned more to one side) which DD also has, but she can turn her head both ways, just seems to prefer one way. Anyone else heard this too?

  12. #30

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    Yep, I heard torticollis is common with hip babies, usually where the ddh is to positioning in the uterus, not so much from family history cases.

  13. #31

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    Hi all,

    Must have been MIA, i havent had chance to catch up on chats for ages!!
    Milli5 and Appletree - i had no idea of torticollis relationship with ddh, Miss K had this prob for first couple of months too, and had really short umbilical cord, and no family history of ddh, my reconing must have been position probs in uterus! OMG there were sooo many missed little hints, in hindsight!

    Karma - may the days disappear quicky until next week ... and then for the next 6.

    Miss K had xrays couple of weeks ago, bone has formed well and is now ready to to have all metal bits removed, just waiting for an appointment.

    Waiting waiting waiting, if its one thing we are ALL getting good at, its waiting! HeHeHe

  14. #32

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    Quote Originally Posted by Madcat View Post
    Milli5 and Appletree - i had no idea of torticollis relationship with ddh, Miss K had this prob for first couple of months too, and had really short umbilical cord, and no family history of ddh, my reconing must have been position probs in uterus! OMG there were sooo many missed little hints, in hindsight!
    Madcat what were your missed hints? I too have no family history but am interested in how it may have happened.

    Quote Originally Posted by milly5 View Post
    Physio also said that torticollis (?sp) are also quite common with HD babies (neck turned more to one side) which DD also has, but she can turn her head both ways, just seems to prefer one way. Anyone else heard this too?
    Milly my DD has this. Her head is a bit of a parallelogram on the right hand side, looks like she has a flat bit at the back. The osteo is trying to loosen her ligaments in the base of her skull to allow it to fill out. I think it is mild torticollis and like your DD can turn her head both ways but favours the right.

    Karma hows it going with the cast?

    DD has had her pavlik on for a week now and today had her first bath at the hospital. She kicked and kicked . But her groin area was just gross! I hadn't been getting in and cleaning it and the physio said to just put currash powder in there and not to wash it as its hard to dry it out.

    We are getting used to it all. I'm finding BFing in public more difficult as I need to get her in the right position with legs in the air.

    Also can I ask you all what you did for a car seat? She is now bursting out of the capsule so need to move her into a seat. Did you find any particular make/model the best for them to have their legs splayed?

  15. #33

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    Quote Originally Posted by dusty View Post
    Also can I ask you all what you did for a car seat? She is now bursting out of the capsule so need to move her into a seat. Did you find any particular make/model the best for them to have their legs splayed?
    We have a safe and sound meridian which takes them from birth to 18kgs. DD fit into it in both her braces (rear facing) and all we had to do for the cast was put a folded up blanket underneath her because there was a gap. Whatever seat you get, you still might have to roll a blanket or towel to put under her feet so they aren't sticking up in the air. It has removable padding so as they get older, they still fit snug, and we found this to be great as we could take out the padding early so DD would fit with the brace.

  16. #34

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    HI Dusty,

    List of missed hints:
    Unusually short umbilical cord, and therefore restricted movement/position in uterus.
    Leg creases didnt match 2 on one side 3 on the other.
    One leg slightly shorter.
    Would only put weight on one leg when held in standing position.
    Flat spot on head from sleeping with head to one side.
    General sleeping/settling probs
    Feeding probs on one side, thought it was due to neck problem. Went to chiro, fixed head, missed hip
    Screamed house down everytime when CMHN went to check hip, so much so nurse didn't want to upset her, and just ticked box to say all was ok!!!! This went on until at 10 months our regular nurse was sick and we had a fill in nurse who picked it up because her good hip clicked!
    We have no family history, apparently easy labour (didn't feel like a walk in the park, but i will take thier word for it. hehe), yes first born and girl but thats about it. So for the last 5ish years i have been telling others what to watch out for, i cant claim it has helped anyone i know of, but these late pick ups should be a thing of the past!!!! More people need to know about this, I never knew what Hip dysplasia was, and only thought it was something that effected dogs! Don't get me started on the health nurse who should have picked up on the leg creases, leg length and screaming at being checked, If i can google it and find the warning signs, they all shoudl know them. Anyway sorry for the rant, still occasionally bitter about it all.

    One the up side she is doing really well and we are blessed to have such a patient, strong and determined little angel!

    Hope all you lovely mums and sparky little ones are doing great

  17. #35

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    Madcat you are so on the money there. My DD's paed said that it has become so common that the government should introduce mandatory ultrasounds for six week old bubs as part of their initial health checks because in so many cases it isn't picked up until later. It makes me so angry when I read stories of parents been given the brush off because the doctors or health professionals believe they are being a paranoid parent and it takes numerous doctors visits and then finally a change of doctor before it is diagnosed, and by then, it takes such a long time to treat.

    Initially, we didn't have any idea of where it came from for DD other than the fact DD was a girl. We didn't know of a family history, she wasn't prem or breech. But interestingly enough, a few months back, DH went for a physical for a new job and they found that one leg could go up higher than the other and she asked if he had hip dysplaysia as a child. If he did, it was never diagnosed, or his mother never said anything about it (she was not forthcoming on any medical issue believing it to mean that it was a failure of some sort and we don't see her anymore to ask). So in our case of having no reason for it, there may have been one after all.

  18. #36

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    My partner and I were just talking about missed signs and then I come on here and see this discussion. How timely! In hindsight, we definitely had missed signs:
    Very obvious leg crease differences (I had no idea this meant anything though)
    Preference to sleep with head to only one side
    Breastfeeding better on one side
    Hated tummy time and would scream her little head off if put on her tummy
    Popping sound which chiro said was from her back and just meant that she was likely to be more flexible in her joints. Chiro also had to keep working regularly on a rotation through her lower back
    Commando crawled a little late and would favor one leg and kind of drag the other.
    Crawled properly a little late
    Would tend to stand on toes of one foot and flat foot with the other.
    Cruised furniture happily but hesitant to walk forward when held by the hands until just before her surgery.

    There were a few other signs but I can't remember them at the moment. The problem was that I didn't know that any of these things were a sign of a problem. Educating parents in greater detail would be a big step forward in minimising the chances of late diagnosis.

    Dusty - We have the Safe n Sound Maxi Rider (the one with the Active Headrest) which we picked up second hand and Britax then sent us an extension strap for the crotch strap. It was perfect for the cast but wouldn't be any good for your little one as it is forward facing only. DD was in her capsule right up until she went in for surgery at 13 months but she wasn't in any kind of harness or brace so she still fitted perfectly. I wanted to keep her rearward facing as long as possible so I was disappointed to have to turn her around.

    Hmm, where shall I start with answering how things are with the cast. I will give you the short version which is that after a very anxious week where DD developed a cold and her skin continued to deteriorate under the cast, we were faced with a hard choice. Either let her have a general anesthetic whilst she had a cold or risk leaving the cast for a further two weeks passed the six week cast change date knowing that her skin was in a bad way in a number of places that we couldn't reach (and possibly worse where we couldn't see). Luckily we have a wonderful anestheiologist who recommended that we have Amahli admitted as planned on Wednesday at Cabrini, and she could be assessed on the day to determine which issue was more of a priority. We then discovered that my partner had bronchitis so we headed to the doctor on Tuesday to check that DD and I only had colds and hadn't picked up bronchitis from him. Bronchitis would have meant a definite cancellation of the cast change.

    The anesthetist assessed DD on Wednesday and was quite confident that we would be okay to go ahead, even though it wasn't by any means an ideal situation with her cold. Thankfully we did because her skin really was deteriorating under the cast, so much so that they didn't put a new cast on!!! I knew it was a possibility that they might leave the cast off if the problem was extreme and then bring us back for a new cast when her skin had healed, so my heart just dropped when the anesthetist came out and said that they hadn't put a new cast on. However it wasn't all bad news as the surgeon had decided to put DD into a rhino cruiser brace for the next six weeks instead. He said that whilst it wasn't ideal, it would allow her skin to heal and he could see that there was some nice shape forming on the acetabulam. Her skin certainly had broken down a bit but it wasn't anything too serious and will heal fairly quickly hopefully.We will have an X-ray in two weeks to determine whether DD needs to go back into a cast or can continue in the brace. Not at all how we expected the day to pan out. We didn't even have her proper size nappies with us as we had only taken the ones that fitted inside the cast...lol...

    DD was fitted for the brace about three hours after she came out of recovery and we were allowed to come home the same day. Originally we were told that she would definitely have to stay overnight for monitoring due to her cold but apparently everything went so well that they were happy for her to go home the same day.

    We have been told to treat the brace as if it is a cast which means it is not to be removed at all and barely even loosened. It makes nappy changes almost impossible and we can't put clothes under the brace, but it is a small price to pay for the extra freedom that DD now has and the huge smile on her face when she kicks the bottom part of her legs around. And she is so much more squishy now that I just want to keep hugging her all the time...lol...

    PakRakMG - Very interesting about your DH. My sister had Spina Bifida and we have since learned that spina bifida children can tend to have a form of hip dysplasia directly associated with the spina bifida itself. Makes me wonder if there is a link there for my DD?

    Madcat - I love the description that you gave of your little girl and I think that is a great way to look at things. I think anyone with a late diagnosis feels bitter at times... I know that I sure have. But stories like yours help others earlier in their journey to have hope and I know that reading about your little girl has helped me immensely. :-)

    Yep, another novel from me...I just can't help myself! I'm even worse when you talk to me in person...ROFL!!!

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