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Thread: Hip Dysplaysia Support Group

  1. #145

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    Unhappy Chloes Story

    Hi girls....well here is Chloes Story


    I was in the bath with her around 4 months old when I noticed a clicking sound, my heart sank as I new what was coming, I took her to the health nurse who checked her hips and she told me to take her straight to the doctors, so I did that, the GP had then straight away rang the Marter Childrens Hospital to get a referal, that afternoon they rang me for an appointment the next week

    November 25th 2008: Ortopedic Appointment, 2day Chloe was fitted with a Pavlik Harness, was a bit upset seeing her go into it, but she done well....

    November 27th 2008: Chloes first hip ultrasound, results: Angles 35 degrees and 40 at the time her left hip was the worst....

    December 9th 2008: Ortho. App. still no change

    December 16th 2008: X-ray appointment

    December 19th 2008: Ultrasound Appointment

    December 23rd 2008: Orto. App. Left hip Ok right hip not Ok

    Chloe then developed a really bad rash (not good) its been 9weeks (27th Jan 2009) rang the Marter and they told me to take the harness off her, as the rash comes first at this stage.... She cant move her right leg, kicks her left like anything



    January 30th 2009: Ultasound and X-ray, still not better, something about soft tissue in the right hip socket

    Well she is now 6months and 3weeks her next Ortho. App. is on Tuesday the 3rd of Feb. really not looking forward to it, they (drs.) told me last app. that the next step would be a spica, I just feel like its my fault and I just want to cry all the time when I look at her.....I feel so bad and its only going to get worse when the day comes for surgery and cast..... Thats Chloe's story for now..... Take Care All xxxxxxx
    Last edited by MantaRay; February 2nd, 2009 at 07:13 PM. Reason: removed purple - purple is reserved for mods

  2. #146

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    Default

    Hi all,

    I am new to this thread.

    My little girl (first born) was diagnosed with severe hip dysplasia 2 and half months back just short of 6 months old.
    She was put in a DB Bar and seems to be doing quite well at this point (rolling,crawling and sitting up).

    I was just wondering how long other babies, diagnosed at this age, needed to be in the brace, and how well did this work, or is it likely she will need further treatment? (ie surgery or spika)

    Thankyou in advance,
    Jo

  3. #147

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    Default

    Hi Everyone,
    Welcome Jo! My daughter Hayley was diagnosed with hip dysplasia of the right hip at 4 months (she is now 7 months). Luckily she didn't need surgery as they were able to place the hip in manually but she had to go into a spica. We have two more weeks left (in total it has been on for 3 months with a change after 6 weeks). She is then going into a brace for 2 months, 4 weeks fulltime allowed off for baths and then 4 weeks only when she is asleep.
    This is best case scenario as the surgeon told us if it isn't where they want it to be then she will have to be in the brace longer and he wasn't really willing to say how much longer. When they changed her spica he said the hip felt stable which was a good sign but I guess it's one of those things we just have to play by ear. He hasn't mentioned the possibility of surgery just that the brace may have to stay on longer. I hope this is of some help to you.
    I wish you all the best Jo and I hope the DB bar does its job.
    Monica

  4. #148

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    Quote Originally Posted by Jo-O View Post
    Hi all,

    I am new to this thread.

    My little girl (first born) was diagnosed with severe hip dysplasia 2 and half months back just short of 6 months old.
    She was put in a DB Bar and seems to be doing quite well at this point (rolling,crawling and sitting up).

    I was just wondering how long other babies, diagnosed at this age, needed to be in the brace, and how well did this work, or is it likely she will need further treatment? (ie surgery or spika)

    Thankyou in advance,
    Jo

    hi jo,

    your circumstances sound pretty much the same as mine, my daughte charlotte went into DBB just before 6 months, she gets checked on 6th March to see how its progressing and to be honest it is in the back of my mid that she might need further intervention like surgery or a spica... fingers crossed she doesnt... my orthotics lady at the RCH melbourne told me that it is unusual for the DBB to fix a baby at this age within 3 months, so i asked if it is more like 6 and she said usually more like 9 or 12, but fingers crossed all ound that it is faster!

    how does your daughter handle the brace? it is great that she is rolling... did you do anything to encourage that? Charlotte will notroll in hers, she sits up and she can move around really well in reverse and circles... she is getting up on all fours and trying to crawl but cant move her legs independantly... how does your daughter crawl?

    i hope that what i have said isnt upsetting, and after i have been for her next appt i am happy to give an update... (perhaps u can do the same for me as i think our babies musst be almost the same age!!) charlotte was born 3rd june...

    anyway good luck!

  5. #149

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    Default

    Hi All,
    Kell 4- I hope all goes well tomorrow at your appointment.
    My daughter Hayley went straight into a spica at 4 months, we have two weeks left and then a brace for 2 months (hopefully that is all).
    It was really hard for my husband and I at first and I was an absolute mess in the hospital on the day it went on, but you do get used to it and although Hayley was terribly upset for the first 24 hours after that she was fine and has been her happy self ever since. She adapted far more quickly then her mum and dad.
    I hope this is of some help and I will be thinking of you tomorrow. Let us know how it all goes. If you have any questions about the spica feel free to ask.
    Monica
    XXX

  6. #150

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    Quote Originally Posted by cannedemma View Post
    hi jo,

    how does your daughter handle the brace? it is great that she is rolling... did you do anything to encourage that? Charlotte will notroll in hers, she sits up and she can move around really well in reverse and circles... she is getting up on all fours and trying to crawl but cant move her legs independantly... how does your daughter crawl?

    i hope that what i have said isnt upsetting, and after i have been for her next appt i am happy to give an update... (perhaps u can do the same for me as i think our babies musst be almost the same age!!) charlotte was born 3rd june...

    anyway good luck!

    Hi Cannedemma,

    Thanks for your feedback, nothing upsetting (Ithink we've studied all possibilities nad are ready for anything). The doctors just won't say anything straight out these days!
    Beth handles the brace really well, initially she went a little quieter than usual, but after a week she was back to her old self.
    She just figured out how to roll all by herself (she's pretty determined), she kind of pulls one foot up near her head which makes the other one go out, it's quite comical to see, as for crawling, she sarted just getting up on all fours and rocking around, then suddenly she was off, it actually looks like a pretty normal crawling movement, as one leg pulls forward the other stays back, a little like a see-saw.

    We have our next appointment on thursday, so I will let you know how things go.

  7. #151

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    Quote Originally Posted by MonicaP View Post
    Hi Everyone,
    Welcome Jo! My daughter Hayley was diagnosed with hip dysplasia of the right hip at 4 months (she is now 7 months). Luckily she didn't need surgery as they were able to place the hip in manually but she had to go into a spica. We have two more weeks left (in total it has been on for 3 months with a change after 6 weeks). She is then going into a brace for 2 months, 4 weeks fulltime allowed off for baths and then 4 weeks only when she is asleep.
    This is best case scenario as the surgeon told us if it isn't where they want it to be then she will have to be in the brace longer and he wasn't really willing to say how much longer. When they changed her spica he said the hip felt stable which was a good sign but I guess it's one of those things we just have to play by ear. He hasn't mentioned the possibility of surgery just that the brace may have to stay on longer. I hope this is of some help to you.
    I wish you all the best Jo and I hope the DB bar does its job.
    Monica
    Hi Monica,

    Thanks for your feedback, I'm just trying to get a real outlook on the chances of th\e DB Bar working, the doctors and Orthotics all have diferent stories.
    I'm glad the Spika helped with your little one, they adapt to the brace pretty well I've found.
    I'm just hoping we can avoid surgery, I can't bear the thought of my little angel being wheeled off and cut open, if that means the bar for a while longer, then that's fine with me.

    Anyway, good lauck with everything, I hope it all works out for Hayley.

  8. #152

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    Jo-O - my daughter Scarlett has been in a DB brace for almost a year now after spending 3 months in a pavlik harness. She is now 18 months. She started off wearing the DB brace for 23 hours a day and then only at night as there was a quick improvement. Since then however there has not been enough of an improvement to be brace free entirely and our orth say there is a 90% chance she will need an op before she is of school age to completely correct her right hip. We go back for our next appt next Tuesday after 6 months, and we expect her to come out of the brace as we were told it will not make any difference after 18 moths of age. Worst case is that since starting walking 4 months ago her hip has deteriorate in which case she may need surgery now. Best case is it has improved and won't need surgery at all. That is obviously what I am secretly hoping for.

    As for her development in the brace she can roll, crawl and stand up in her brace now but becasue she is only in it in bed she doesn't really get to test it out much. She has become so accustomed to wearing in that after her bath when we are getting her ready for bed she says "brace". I am actually a little worried how she will go at night without it.

    Kell - I hope you are doing OK becasue I am sure Chloe will be fine. It's always us parents who beat ourselves up over it. It is so sad to see your baby with limited movement and the frustration on their face, but it does get better. In the beginning I used to cry every time I looked at Scarlett in her harness and then I felt guilty for crying all over her! I hope you got some answers at your appt.

    Take care all

  9. #153

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    Unhappy

    Quote Originally Posted by MonicaP View Post
    Hi All,
    Kell 4- I hope all goes well tomorrow at your appointment.
    My daughter Hayley went straight into a spica at 4 months, we have two weeks left and then a brace for 2 months (hopefully that is all).
    It was really hard for my husband and I at first and I was an absolute mess in the hospital on the day it went on, but you do get used to it and although Hayley was terribly upset for the first 24 hours after that she was fine and has been her happy self ever since. She adapted far more quickly then her mum and dad.
    I hope this is of some help and I will be thinking of you tomorrow. Let us know how it all goes. If you have any questions about the spica feel free to ask.
    Monica
    XXX
    Hi MonicaP and All

    well at the ortho. app all was not well, my baby chloe who will be 7months on the 10th Feb. is only 6.3kgs and needs surgery on her right hip and a spica, Im sooooo damn scared she is sooooo little I dont know what to do and its going to get worse the day of the opp. (still un-known) please feel free to add me to msn:[email protected] I dont know wat to expect, im sooooo lost my poor baby dont know what she's in for yet and we got 3other kiddies to look after, its going to be sooooo very hard, xxxxx take care to all

  10. #154

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    Default query DDH

    hi folks,

    I'm hoping to pick your brains pretty pls!! We've been referred by our paediatrician for an u/s as my 4 m.o. DS has a "clicky" left hip - only just picked up in the last few weeks by our MHCN. In all previous checks by MHCN, paed & GP he was fine. So in regard to the u/s I was just wondering if there are any particular questions that are useful to ask or information to watch out for? Our u/s is midday on Monday. And do you know if you usually get the results on the spot? Or did you have to wait?

    I guess I'm particularly wary cos i've got a girlfriend who's bub has DDH and she was initially told it was really minor and to go see her paed a few months later... when she rang him to double check, after reviewing the case he said no, it's not minor come straight in and her bub has worn a brace since. So I guess I just want to make sure I don't get fobbed off or delayed if it's potentially risky.

    TIA,
    Belfie

  11. #155

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    Hi All,
    Kell4 and Belfie my heart goes out to you both. I know exactly how you feel.
    Kell4- To give you some idea of what to expect the spica Hayley went into went from her waist to her toes and had a bar across it between the ankles (they leave a hole around the groin area). It was very upsetting to see at first and also hard because she was also upset. However she did adapt to it very well and by the next day she was fine although it took alot longer for me to get used to it, it is very hard to see your gorgeous baby in a spica and I cried alot for the first few days. Hayley is also 7 months now and weighs 6.5kg and like I said before she adapted very quickly to it. It did affect her night sleep for awhile but we were told to expect this. I also have an older son and after some intial questioning he has been really good and understanding with her (he is 5). Hayley is completely immobile in her spica so we have to make sure that we are alternating her positions alot so she isn't always in the same postion ie on tummy, laying down, propping her up (a bean bag is good for this). We have two weeks left in the spica (it has been on for 3 months with a change at 6 weeks and 10 weeks) and then she goes into a brace for 2 months. The x-ray we had last wednesday showed the hip to be nicely in the socket so although it has been difficult to see her in it, it has so far done its job.
    Belfie- Hayley was four months when her dysplasia was detected (missed by 2 paeds and a clinic nurse). She has it only in her right hip. It was a clinic nurse (a different one) who picked it up. She wrote a letter which I took to my GP the next day. He sent me for an x-ray and we got the results that day. He then referred me to a paediatric orthopedic surgeon and I got in a week later (we asked to be put on a cancellation list so got in a bit earlier). He said that although she was only 4 months its not as early as they like to find it so she had go into a spica for three months. He put the spica on about 5 days after our first appointment. I would think you should get the results of the u/s back the same day and then get in to see the ortho as soon as possible, so that everything should happen quickly. From the time of detection to the time the spica went on was 2 weeks. Questions I asked included developmental delays eg rolling, crawling etc, length of time spica and brace will be on for (5 months for Hayley if everything goes the way it should). I found that our ortho explained alot to us in the initial meeting and my questions just stemmed from that conversation.
    Please feel free to ask me any questions as I know your heads are probably swimming at the moment. I hope I have been of some help and I wish you both well!
    Monica

  12. #156

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    Belfie - while my DD situation is a little different - she was picked up at 6weeks the process from the ultrsound should be similar. We were told at the ultrasound there was a problem and that the results would be sent straight to the paed who would then make an app. to see us. The paed actually called that afternoon who said he had arranged for us to see an orth surg the following week (we didn't need to go and see the paed). We saw the orth surg the following week. At the app he explained what would be happen. Be aware they are generally very reluctant to give time frames because every child is different. It is only after they have seen how the treatment is going that they will give possible timeframes. That certainly was one frustrating part. DD was in a pavlik harness and that was fitted at the Children's Hospital the day we saw the orth surg.

    We saw the orth surg as a private patient apparently that does make a difference to the time frame but that was just something a physio said to us that we were seeing for a seperate issue with DD.

  13. #157

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    Hey Belfie- good luck with your appointment today. In reguards to questions.... I asked loads of them at Rebeccas u/s because I knew all about DDH as Olivia was in a Pavlik Harness for a good while, so I am up with the lingo so to speak. I think you should ask if the hip is in place. Does the cup cover the ball, is the ball formed, is the cup formed, is the hip dislocatable, what is the coverage in percentage? Thats the basic terms for it. They are looking to see if the hip is formed properly and sitting in the correct position and if it can come out easily or not.
    As for results, I went through public at Monash and we get our results a week later at the orthopaed clinic.
    For us its been very different this time around. When Olivia had her first u/s they didnt say much....basically her hips werent formed and they didnt want to give us bad news!!!.....we waited a week for that!
    With Rebecca, because i knew what to look for and they knew my first had hip dysplasia, they were open and honest with me. Rebecca has a rounding of her left hip cup, so we have to go back next week for another u/s and then followup orthopead review.

    All the best....sorry if I have rambled...lack of sleep!!!

  14. #158

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    Monica, Bridee, Minimatron - thank you so much for the info, it's really helpful!

    I've listed the questions below that I've gleaned from all of you (figure it might be handy for someone else one day too - plus helps me organise my thoughts lol):
    • Is the hip in place?
    • Does the cup cover the ball?
    • Is the ball formed?
    • is the cup formed?
    • is the hip dislocatable?
    • what is the coverage in percentage?
    • When/how will we get the results?
    • Questions for orth surg: developmental delays eg rolling, crawling etc, length of time spica and brace will be on for...

    I've been told to call my paed's rooms to let them know once it's been done, but I do hope we'll get an indication at the scan. So saying, my paed is only in his rooms every friday so I suspect if there is anything, it'll be just a referral straight to an orth surg.

    Thank you so much for the info, it's really helped - and even though it's made me nervous, I'd rather be prepared & informed. A bit of worry is a small price to pay. And I hope all your little ones are going well and Minimatron - good luck with Rebecca's next u/s.
    Belfie

  15. #159

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    Thanks again, I'm very pleased (and lucky) to be able to say that he got the all clear at the u/s today. I really appreciate the support & information... I actually had hesitated to post in here cos I didn't want to be like this big drama queen when we didn't even know if we had it... but your information was really great and helped me feel prepared. Minimatron, I basically pretended I knew HEAPS to get her to talk about it, and it really worked well - using the "lingo".

    I wish all your bubbas the best and hope they continue to go well & improve. I think you're all doing such a great job, and I can only imagine how challenging it is .

    Thanks,
    Belfie

  16. #160

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    Thats great news. And dont think of yourself as a drama queen, its all very worrying when you dont know whats going on with your bub and all the what happens if....

  17. #161

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    Hi Belfie,
    That's great news. I am really happy for you!
    Monica

  18. #162

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    Great news Belfie - at least you were prepared for the worst going in.

    We are off to the hip clinic to day for Scarlett's xray and check-up. I'm crossing my fingers for good news. I am pretty sure we are handing her brace in for good today but am not sure what the next step is. I'll let everyone know how we go...

    Nicole

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