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Thread: Hip Dysplaysia Support Group

  1. #181

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    That is great news Melissa. You must feel so relieved! I am hoping to get Scarlett into her bed about 2 months before bub arrives so she will have time to adjust before having a brother to adjust to!



    Take care

    Nicole

  2. #182

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    Hi there,
    I have been reading the thread - I took my 10mo dd to the doctor today as one of the ladies at her childcare had noticed that one of her legs was longer than the other. When I looked at her at home, it's totally obvious and I can't believe I didn't notice it before. Anyway, the doctor reckons her right hip is dislocated and we are off on Thursday to have x-rays and scan, then to the specialist next week.

    I can't seem to stop crying - I've been reading all the info about the treatment etc, and the casts and braces just sound awful, and for such a long time! DD is so happy and active - crawling and chasing her older brother around, and I dread her not being able to move around freely for so long. i keep looking at her now and thinking how perfect she looks now and how much life is going to change for her and bursting into tears.

    Is she more likely to have a spica cast as she is older (10 months)? Or could she have a brace given it's only one hip that's affected (I think)? I know we have to wait to see the specialist to get all the answers, but I am killing myself reading all the info on the net and expecting the worst (ie surgery and months and months in a cast...)

    Bertie

  3. #183

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    Hi there,
    I have been reading the thread - I took my 10mo dd to the doctor today as one of the ladies at her childcare had noticed that one of her legs was longer than the other. When I looked at her at home, it's totally obvious and I can't believe I didn't notice it before. Anyway, the doctor reckons her right hip is dislocated and we are off on Thursday to have x-rays and scan, then to the specialist next week.

    I can't seem to stop crying - I've been reading all the info about the treatment etc, and the casts and braces just sound awful, and for such a long time! DD is so happy and active - crawling and chasing her older brother around, and I dread her not being able to move around freely for so long. i keep looking at her now and thinking how perfect she looks now and how much life is going to change for her and bursting into tears.

    Is she more likely to have a spica cast as she is older (10 months)? Or could she have a brace given it's only one hip that's affected (I think)? I know we have to wait to see the specialist to get all the answers, but I am killing myself reading all the info on the net and expecting the worst (ie surgery and months and months in a cast...)

    Bertie

  4. #184

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    Hi Bertie

    I am really sorry to hear your news. As I'm sure you've read (and will find out from people's replies) that all of us have been in your exact situation crying over their baby thinking about how everything will change. I spent the week between finding out my daughter had ddh and getting her into a pavlik harness (at 3.5 months) crying constantly. Not only was I sad for her but also myself. I thought why does this have to happen to me with my first born?

    You will hear this plenty of times (and it doesn't help right now) but no matter what treatment your bub needs, she (and you) will adjust to it relatively quickly. There will be someone on this forum who can give you advise about feeding, dressing & entertaining your bub if she is in a brace or plaster.

    Make sure you let us all know how your appointment goes. We will all be hoping for the best for you.

    Nicole

  5. #185

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    Hi All,
    Bertie - I agree with nicoli - the tears are a natural reaction. You just have to think that getting her treated is the most important thing.

    I have never posted in this thread before - but have been reading with interested. I have a 20 month old son that was diagnosed with hip dysplasia at 3 days of age. He was in a pavlik harness for 13 weeks and has just got the all clear.

    We are due to have our next bub in 4 weeks (a girl). None of the doctors that I speak to are able to give me any information on the chances of her having hip dysplasia. So I thought I would ask you all - did your second have hip dysplasia or was it only your first? Or do you know much about the chances?
    Thanks in advance.

  6. #186

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    Hey Bertie, I am sorry to hear about your news, It will take some time adjusting, however in the long run it will be for the best. I think I had more trouble adjusting than my dd! I did cry andcry and each visit to the specialist I cried. Its natural to have these emotions. Sorry I am being brief but got 2 girls mucking about!

    Hisista; my story is Olivia my first born was diagnosed with ddh at 3 days old. She was in a Pavlik Harness until 8 months old, crawled by 9 months and was up and running at 12 months. She got the all clear at 19 months. It was the longest time of my life, but we got through it. Rebecca my second girls was born about 3 weeks after Olivias final review. The specialist suggested she get reviewed when she was born as it is more common that a female sibling will have hip dysplasia as well. So we had her assessed at hospital. She ended up having a mild form, requiring no treatment and we recently got the all clear.

    I hope that helps....got to feed the troops, I wish you all the luck

  7. #187

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    It is true that it is harder for us to adjust than for them. My son just took it all in his stride..

    Thanks for that minimatron. This baby is in a much better position so I am that she will be fine. This baby will be seeing the specialist too so we will know early on if there is a problem.

  8. #188

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    Hisister- neither of my girls were breech, but both had hip dysplasia. Oh and by the way I was the 3rd child and had it and none of my 7 brothers or sisters had it....funny how it works!

  9. #189

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    Hi,

    Thanks so much for your support. I did have a couple of questions re specialists / orthopaedic surgeons... My GP yesterday had to phone around several, before she finally was able to get us an appointment with a Dr Kuo in Randwick (Prince of Wales Hosp). She had tried Dr Little first - I've seen a couple of you mention him - but he was booked up for ages.

    Has anyone heard / dealt with Dr Kuo? Did you get your specialist from your GP or did you phone around too? Any advice in this area? I was a bit taken aback that they all had such long waiting times to get appointments (I thought it was just obstetricians that were like this!!!)

    Obviously I want to make sure we are getting the best possible care for dd...

    Thanks,
    Bertie x

  10. #190

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    Hi Bertie

    We were refered to a local orthopaedic surgeon initially because our paediatrician knew it would take a while to get in to see Dr Little at Westmead and he thought it was best to start some sort of treatment as quickly as possible. We saw the local guy (who didn't specialise in children) for the first 12 weeks while she was in her pavlik harness and he then refered us on to Dr Little to manage her hips as her problem was going to requre ongoing treatment. We then seemed to get an appointment quite quickly with Dr Little. He is always very busy at the hip clinic which is held on Tuesdays after 1pm.

    My suggestion would be to see the other doctor first and see what he says. The sooner you know what treatment is reuiqred and get it started the better. I know there are other people who have seen another doctor at the private medical centre at Westmead but can't remeber his name?

    Regarding the subsequent child question, I was told by Dr Little to have my baby (boy due in August) checked at 6 weeks to see if there are any problems. I believe that ddh occurs predominantly in girls, but since it is in the family, any other siblings need to be monitored. I had a normal pregnancy and delivery with my first, no history in the family or anything, but I guess these things just happen. I'm a little bit nervous about the baby also having it, but realise I can't do anything about it anyway so just need to relax.

    I hope you get in to see a specialist soon

    Nicole

  11. #191

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    Thanks Nicole - we'll give this guy a try and see how we go...

    We had our first x-ray and ultra sound today. The radiologist did the ultrasound first, in case they could avoid the x-ray. Olivia screamed and screamed when they were doing the ultrasound - it was awful. I kept thinking, if she is this bad when they are just holding her legs still and not even hurting her, what's she going to be like when she gets put into a cast?!? When the ultrasound showed there was definitely something wrong, they did an x-ray too. I made my husband go with her, as I just couldn't face hearing that screaming again as she would be put in some sort of restraint for the x-ray - I know, I'm a total wus. In fact, she was totally ok with the x-ray.

    Anyway, her left hip is fine, but she has a shallow socket at her right hip, and her right leg isn't in the socket at all, but pushed up right above it which is why her right leg is shorter. I think the radiologist was a little surprised it hadn't been picked up before, which just made me feel like a terrible mum, and I can't believe we haven't noticed anything before - it seems so obvious now. I just assumed everything was developing ok as she had been meeting all her milestones and was crawling around so well etc...

    So I am thinking a cast is almost certain, if not surgery too - I'm absolutely dreading it and I'm worried I'm not going to be able to handle it at all - seeing her upset makes me REALLY upset, and this probably makes her even worse! It breaks my heart everytime I see her smile, thinking how upset she is going to be.

    Question to those of you with older babies in casts - do any of your children go to day care? Olivia currently goes 2 days a week, and I was assuming that she wouldn't be able to go, but speaking to a friend of mine today, she said why on earth not, and surely the best thing would be for Olivia to enjoy her normal routine (she does love day care) so as not to disrupt her life too much? What do you think? I was all for taking 3 months off work and basically molly-coddling her the whole time she is in the cast, but maybe that's not the best thing for her after all?

    Bertie x

  12. #192

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    Hey Bertie, you are not a terrible mum for not picking it up. Its not something that you can see plainly and if she has reached all her normal milestones then why would you pick it up.
    As for day care, I shouldnt see why not. Just ask your carer. Is Olivia in Family Day Care or a big centre? My Olivia was in the harness but we kept her routine as normal as possible. Good luck.

  13. #193

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    Hi all,

    I am sitting here today in total confusion. My dd2 19mth has been diagnosed with DDH, it has only just been picked up. We are off to Dr Little tomorrow for our first consult. I am feeling lost - i have read so much and there has been so many good things then i find info about cases that haven't worked after several surgeries. I really need some support. I'm not sure how to deal with all the info.
    Can anyone help.

  14. #194

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    Hi cjoe, welcome to BellyBelly. I am sorry to hear about your daughter and the late diagnosis of ddh. I hope that you are able to get some answers tomorrow from Dr. Little. Apparently he is very good ( from what I have heard on here). I am unable to give you any advise on what happens with surgery as my dd was in a harness from 5 weeks old to 8 months. I do know that all these emotions are completely normal, there are loads of questions you will be asking, why my dd, why us, why wasnt it picked up earlier, what happens next. I think you'll find the girls in here will offer you lots of support, which you will need...especially initially and as specialist reviews come up.

    Good luck tomorrow and let us know how you went,

    Melissa

  15. #195

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    Hi cjoe

    We all know how you are feeling at the moment. It's hard to take everything in. Make sure you have a list of things you want to ask Dr Little and when you leave write everything down or you will probably forget.

    We see Dr Little for our daughter Scarlett who was diagnosed at 3.5 months. She has been in a harness and brace since then. For over a year she has only worn the brace at night, but we have just taken it off for good. We have a review in July (just before she is 2) and will now need annual reviews until she is 4 to see if she needs an operation as her hip has been very slow to recover.

    Like Melissa - I can't give you any advice on surgery I'm afraid. I do know that all the other mums that have been through it have been amazed at how well their little ones adjust. 19 months is a tricky age as they are starting to understand what is going on more, but maybe that will help in explaining what is happening through the process.

    Good luck at your appointment - let us know how you go.

    Nicole

  16. #196

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    Hi Melissa and Nicole,

    Thank you so much for getting back to me, it is wonderful to hear from others going through this.
    Our trip to Westmead has ended up with Ella being booked in for surgery on June 23rd. She will be having a Pemberton Osteotomy, they have to open up the hip, reform the socet, put in a bone graft to hold it in the right shape and cast her chest to toe for about 6 weeks. We are hopeful that this will be all she will need in the form of casts, she may need bracing at night after that. So all in all I feel much better, we were told that at this age this is the best option. Dr Little was wonderful to talk to, he gave us a lot of confidence inthe team.

    I hope both of your dd's are recovering well. Again thanks for your support, it really is appreciated.

    Caroline,

    DD1 almost 3, DD2 19 months

  17. #197

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    Hi Caroline,

    Sorry to hear about your daughter - we are going through the exact same thing. My daughter has just been diagnosed at 11 months, and she will be put into a cast (12 weeks!) on 22nd - just the day before you! We are at Sydney Children's Hosp in Randwick though.

    Our specialist thought surgery would not be necessary for her, and will just be pushing the bones back into their right place. I know it is hard to compare diagnoses, as I'm sure there are loads of different ways their hips can go wrong, but can you tell me why your daughter needed surgery? Is it that she was a little older? Is she walking yet? Like you, I have read lots of stories where treatment didn't work and they end up having to have multiple surgeries / casts, and I really want to avoid that if possible. I'm sure my specialist is just fine, but I hope he's doing enough iykwim...

    At least you only have 6 weeks of cast - that must be a good thing!

    I just posted in the other Hip Dysplasia forum, with loads of questions - I imagine you have the same questions, or if you've already been talking to people you may have some of the answers I need?!?

    Anyway, like you I am trying to put on a brave face - it is not forever, and our beautiful daughters will be just fine at the end of this. We just have to get through the next few months, which I know are going to be traumatic. I wish we could get on with it though and didn't have to wait until 22nd/23rd!

    Good luck,
    Bertie

  18. #198

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    Hi Bertie,

    We were told that as Ella is over 12 months, surgery was the only option. I was concerned that I initially started this process at 14months when she was walking independ. Dr Little explained that had we seen him then he would have waited until around 18months for this treatment. All I can presume is that it is an age thing. I'm sure your specialist knows what he is doing, you can always ask for a 2nd opion, we only had to wait 2 weeks to get into Dr Little. I'm sure though we are having surgery as the first option as Dr Little said that there is no point in Ellas case to do anything else as it wouldn't work, I hope he is right as the thought of surgery scares the hell out of me!! I just keep thinking that they know what they are doing and they are an experienced team.

    I hope all goes well for you and don't beat yourself up not noticing, our local GP and Paed missed it too, it was just an X-ray to reassure me that picked it up.

    They will be ok in the long run, really this is just another phase of their growing up, it may be a hard one, but so were all those sleepless nights and learning to self settle!! We mums are strong and will get there in the end.

    Take care and keep smiling, sining also helps!!! - you can't be in a bad mood when you sing, I think I have run out of tears over this and now we just have to get on with it and be practical about it all.

    Take care, let us know how you get on.

    Caroline

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