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Thread: Hip Dysplaysia Support Group #3

  1. #73

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    Just popping in to say hi to you all. I've been reading the posts, just not posting.



    So massive big for you Karma and Milly. Fantastic that your babies are now brace free.

    Woo hoo to you Dusty, so so close!!!! YAY!!

  2. #74

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    yay dusty - great news!!

    so DD has now been without her harness for 2 weeks. She still is scared of the bath, but is slowly getting there.
    I am amazed though that you can still see where the harness was (red marks) which become prominent when she has a good cry (ie red faced cry).
    But my concern is that she still has "frog legs" (they are in the same postion as they were) and she still lies only on her back, I had hoped to give her some side time (because of her flat spot on her head) but she doesn't like it at all!
    And sadly, she doesn't like "cuddles" yet - before the legs went right out to the side, we used to spend alot of time with her sleeping on her side beside me, or on my chest, but as the legs got wider and wider, she began to hate these positions, and I was hoping she'd go back to them now, but sadly no mum misses the sleepy cuddles!
    Her wind seems to have settled somewhat - well, she seems to be able to burp a bit easier now.
    anyway, just thought I'd share some "observations".
    good luck with all your little'uns treatments!

  3. #75

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    Sorry I haven't been posting ladies, I wasn't getting the notifications!! I am now though?
    Milly!! Yay!!! How exciting, I'm so, so happy for you and DD! I wouldn't worry *too* much about only lying on her back, she's still only a few months old. DS was diagnosed at 12ish weeks and he was still only lying on his back, didn't like his front, or side to much. I understand about the flat head concerns though, we did lots of *tummy time* on my chest. Or just carrying him around (not in a carrier) helped him push away from me, and worked his arms and chest a bit. Great to hear her wind has settled!

    Dusty, so close! You must be so excited!

    Well, we're gearing up for our six week appt on Thursday, all I want to know is that the harness is working I'll be happy with that! You girls were right, and thanks for the encouragement, it certainly has been a lot easier than those first few days. We ended up making an appt with the orthotist because we were concerned about his 'bad' leg not kicking at all. He seemed to think that the docs had tightened that side too tight, but explained there are a couple of different philosphies. His personal one is to let gravity to the work, but some doctors think that to overextend works better. In any case, he loosened it a teensy bit and DS was able to kick right away. At our 1 week scan, his femur was already in the correct position! We were so, so pleased.

    One thing I wanted to post here for anybody trawling this thread for info on clothing is that bonds 'roomies' shorts a couple of sizes up fit really nicely over a harness, and don't pull on their legs at all. The 'denim' ones are better than the tracksuits as they aren't as elasticised. (mods if it's inappropriate to post the brand, let me know, but it's saved me a lot of hassles!)

    Cross fingers for us that it's all working!!! By the way, did you get a new harness at all? or keep using the same one???

  4. #76

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    so we were in at westmead yesterday for our check and the good news is that the harness has been working! His leg's in the right spot and his socket is doing what it should be doing. He was fitted for his DB harness yesterday and we'll get it on Wednesday.

    We saw a couple of doctors, one, the registrar had no idea when we were asking questions and got our hopes up by saying that he'd be in a harness for no longer than 8 more weeks. Then Dr Little came in and said he'll probably be in it for 8 months more. We're not upset (really upset I mean) by that but it kind of jacked us off that one doc said 8 weeks without really knowing what was going on.

    So...we're about to make the transition... questions...
    Is this the end of cuddles with my little man?
    Does the DB bar interfere with feeding?
    Or, is it a totally awesome replacement for the pavlik??

    Hope everyone is great! xxx

  5. #77

    Default sorry it's been so long

    Sorry it has taken me so long to get back on here and keep up to date with you all. Emily has now been in her DB Bar for 12 weeks. At the 6 week check up her left hip was where it should be for her age but her right still had a way to go. On Wednesday she had to have an x-ray as there was too much bone to get a good image on the ultrasound . Her right still isn't as good as the left but is perfect for her age. Unfortunately we couldn't see her normal Dr and the guy we saw wasn't willing to make any decisions regarding someone else's patient. I was concerned that if Em stayed in her DB Bar for even another week she would damage her hips or have some other negative effect as she had worked out a way to shift the bar into the wrong position and would do so within seconds of me putting back in the right place. So she has been put in a Rhino Cruiser until we see her normal Dr.

    As it turns out we'll be seeing him on Monday. I don't know if he'll have time to review Emily on Monday, but he is performing the double open reduction on Olivia then. We are so worried about our little girl going in for surgery, it's such a scary thing to face. She is being fantastic about it all and keeps saying that we are going to see "Dr Legs and he is going to make Olivia all better." It's so cute the way she says it. This will be the first of three operations for Olivia and the first of three (six including changes) spica casts for her too. We have a long road ahead of us and are glad it's finally getting started. I hope that she is able to attend pre-school even in her spica, it's still a year away, but I don't want her to miss out on anything.

    Congratulations to those of you who have reached the end of your hip journey. It must be a wonderful feeling.

    I will come back late next week and let you all know how we got on.

  6. #78

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    Hi there OLEM, sounds like you've got a busy day coming up, hugs and strength to you!!! I'll be thinking of you, and looking forward to hearing how Olivia's operation went. She sounds gorgeous, you have a wonderful little girl there!!!

    I hope Emily gets to be reviewed soon, too. I hope she's out of her Rhino cruiser soon, too.

    This is the first post I've read from you, so I don't know much about your journey, but sending lots of hugs and strength to you, although you sound like you have plenty of both!!

  7. #79

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    Hi ladies,

    I haven’t posted in a while, but have been reading your updates every now and then.

    OLEM- I hope that Olivia’s operation went well yesterday, it’s awful seeing your baby in discomfort and in that heavy cast, I sympathise with you. How is Emily coping with the Rhino Cruiser brace?

    Just a quick update on Emma- she had her review with the surgeon in December and she is now brace free during the day. The strength in her legs came back amazingly fast and she is now on her feet cruising the furniture, almost ready to take her first steps! We have another appt in April and we hope it is more good news and the end of her hip problems. It has been an emotional rollercoaster since hearing that she had a dislocated hip and required surgery, but it is well worth it in the end to see her up and about and such a happy little girl!

    Hope everyone is doing great

  8. #80

    Default Surgery

    Krystals - I think my first post is on about page three, I haven't posted often as I only joined recently after a friend pointed this group out to me.

    Olivia's surgery went well, the surgeon was really happy with how things went. Her recovery over the the following 48 hours was horrific. I never want to see our little girl go through that again and just hope it's better for the next two surgeries. She is getting better each day and we are even getting some smiles now. We have been able to cut back the meds to just paracetamol and ibuprofen and she seems content with just those. I'm so glad she is off the strong stuff, especially the morphine. It's no fun having a young child talk nonsense as a result of drugs. We are taking each day one at a time and just aiming for the 6 week cast change at this stage. One thing I have learnt is due to hear weight in the plaster (17.1 kgs) I easily scratch my arms on the fibreglass. So I have taken to wearing socks with the toes cut out on my arms when I have to move her. Olivia likes seeing the socks so much that she now wears a pair too .

    Emily is also going well. The surgeon has said she only needs to be in her brace at night and she is loving the new freedom. Her next x-ray and check up will be in 12 weeks when Olivia gets her plaster off and goes into a cruiser.

    furgurnie - wow, it sounds like Emma has maintained a lot of strength. She'll let go and walk on her own in no time

  9. #81

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    OLEM great to hear Olivia's surgery went well, but I'm so sad to hear about the following days, she must be so tough, but it must be so heartbreaking to see her in so much pain! FX the next two are a lot better. I hope you're getting more and more smiles each day! Love that Olivia loves the socks on your arms, that's so cute!

    Go Emily! Brace only at night! She must be loving it!

  10. #82

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    Hi ladies,

    Olem - hugs for you and Olivia! she sounds like such a brave girl! I'm glad that Emily's treatment is going well. My heart goes out to you and your two girls

    It is so nice to hear about everyone's progress.

    There is another little bub with hip dysplasia in my tiny little rural community - who wasn't diagnosed until 8 weeks, and another (12weeks old) being investigated. I still can't believe how many children there are with this problem, I had never even heard of it before our DD. I mean I had seen kids in the plaster, but didn't really understand what for of how common it was. I think it needs to be more widely known and someone previously mentioned ultrasounds at (well soon after) birth. I am going to be demanding one if we have another. At least with our DD she went in her harness right away.

    Well, DD now likes to bath and splash her legs. She seems to kick her legs more than she uses her hands - I guess it's still novel for her LOL! She still sleeps in "frog leg" position (after being out of her harness 7 weeks), and still isn't much interested in trying to roll or spend too much time on her tummy, I think because she can't kick in that position.
    Our review is in March, and I hope everything is OK. Has anyone had their little one "finish" treatment only to have to recommence treatment again?

  11. #83

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    milly I'm with you, we'll be demanding an ultrasound at birth as well- I wonder if you can find out beforehand??? Especially considering it wasn't picked up for so long with Jacko (12 weeks, and because I knew something was wrong and asked for an ultrasound), and he doesn't really fit the bill except for a difficult birth. Glad we picked it up at 3 months and not 3 years though. Good luck with your review- it's creeping up!

    We have Jack's 6 week appt on Tuesday. 6 weeks in his DB, I can't believe it's gone so quickly! It seems to have gone way faster than the 6 weeks he had in pavlik! He doesn't need ultrasounds anymore apparently, we just go in for an xray now. Does this sound normal? It's hard not to get my hopes up about them extending his harness free time, but I know I should be prepared for anything. He can get his toes in his mouth though, so that seems like a good sign that he has good rotation at least?

    One thing that is bugging me about the brace is a small bruise he has just below his ribs that I'm sure is caused by the waist strap. I don't know when it's happened, but I can't imagine it's been caused by anything else. Have any of you experienced this?

    Hope everyone's hip bubbas are going well and are happy

  12. #84

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    From what I have been told, is routine once you have had a bub with hip dysplaysia to scan any subsequent children before they leave hospital or within the first week (breech babies are normally routinely referred for a scan too) - with this one I will be making sure get scan as soon as possible (I am hoping it is a boy as chances of hip dysplaysia are reduced if so) - I have also been told that any children DD has will also be routinely scanned. I don't think is possible to tell beforehand because the hips have to be at a certain angle for them to tell in an ultrasound and I can't see that, that position would be possible while still inside.

    Krystals - moving from ultrasound to x-ray at around 5-6 months old depending on bubs size sounds normal to me - that is what happened with my DD - apparently once bubs are a certain size due to amount of tissue need to see through can't get accurate results on the ultrasound.

  13. #85

    Default Getting There

    Krystals - x-rays from around 5 months is normal. Once bubs starts developing bone the x-rays are more accurate and ultrasounds can't pick up as much detail.

    As for us - Emily is no longer in her brace at night, but no results as yet as she isn't having another x-ray for another 8 weeks. She has started commando crawling and is trying to get into everything.

    Olivia is going really well. She does get irritated about the spica and often says she's all fixed and it's time for the doctor to take it off. She can get around on both her belly and her back in the spica and has even got herself up onto her feet twice. I'm so glad this summer is quite mild as she hasn't been getting too hot. Which I'm sure is helping keep her a little more comfortable than if we were having a typical summer. Two weeks until she has her spica change, yay.

  14. #86

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    Guess who's brace free during the day!

    When we were in the doc's and she said he only needed his brace at night my response was 'Are you sure???' I thought she was talking to the wrong person! Is it wrong that my first thought was "YAY he can wear pants!!!"? Am very proud and pleased and excited. Next check up isn't til May.

    One thing the doc did mention is that he still might need the brace for his day naps as well. That's fine by me! I really thought the treatment was going to stay at one hour free a day. WOW!

  15. #87

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    Does anyone know if hip kids can use a jolly jumper when they're not wearing their brace? Or while they ARE wearing their brace?

  16. #88

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    Hi Krystals - we let DD use her jolly jumper while in the brace. She didn't really bounce around in it though, more turned around to look at things from a different angle. We never had her in it for very long, but it was nice to see her able to be "standing" somewhat.

  17. #89

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    Thanks PacRakMG, we've decided not to get one, we're not so much worried about the jump 'up' but the landing. Over-protective much? LOL

    Hey I've got another question to throw at everyone- How did your kids go falling to sleep without their braces??? Jack's been out of his during the day for just over a month and he's still wearing it for naps as well as sleep. I'm noticing he won't sleep without it though, whether we're out and about OR when we're at home. The out and about could be something unrelated (he's way more interested in what's going on!) but I'm pretty sure his probs at home are about me trying to put him down without his brace. Any thoughts or advice? He's in the brace at night until at least May, so no rush, but would love to know how you all have gone x

  18. #90

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    DD wore hers for about 6-8 weeks just at night after got the all clear to take it off in the day - probably the first week without it on at night she was more unsettled than previously, but after that was ok overnight until she worked out how to stand up in her cot, which led to another week or so of unsettledness. She was always in sleeping bags and I think this helped with the sleep association - I know at one point I had to start putting her in a sleeping bag for day sleeps too and that seemed to help.

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