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Thread: Hip Dysplaysia Support Group #3

  1. #91

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    thanks wysiwyg (it took me forever to figure out your name! LOL) Jack uses a sleeping bag too, so I'm wondering if he still has the bag, but no brace, he'll do ok. Maybe when he's missing both, it's just too much for him. Still a way off yet, but interested to know what everyone's experience is


  2. #92

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    Hi ladies,

    I just wanted to share our good news - DD had her review 3 months after coming out of the pavlick, and all is good she just needs to go back for review when she starts walking! (? in about 6 months or so???)
    I had been so frightenend, almost expecting the Dr to say she would need more treatment, it was such a relief to hear that she is OK!
    The doctor is not concenred by her slowness with rolling etc, and said it was to be expected having been in the harness, so that's also a relief.


    just catching up on posts now ...

    krystals - I haven't heard about a bruise, but DD still has a dry patch on each leg from the velcro rubbing on her legs from the pavlick. I think it has caused a scar for it to still be there after 3 months.

    wysiwig - thanks for that info re scans and xrays, very helpful.

    Olem - how is Olivia going now? she sounds like such a brave and strong little girl.

    to all the HD bubs and their mums!

  3. #93

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    yay!!! that's such great news!!!! you must be so relieved!
    How old is your little one? I'm sure once she gets moving it'll all come soooooo quickly!

    Thanks for answeing about Jack's bruise, it went away after a couple of days, no problems now!

    But mostly I wanted to post.... YAY!!! Great news!

  4. #94

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    Hi everyone

    Olivia's journey has moved to the next stage. She had her spica removed last week and is now in a Rhino Cruiser. Having the spica removed was terrifying for her and she has had a lot of trouble getting over it. She has been very unsettled at night and misses her plaster. She is slowly getting more movement in her legs which is improving her mood and as the stiffness and dry skin reduces she is also becoming a little happier.

    The surgeon has decided that Olivia shouldn't have to wait 6 months between her next two operations. He is hoping he'll be able to operate on both hips at once, but if he can't he'll operate on the other hip at the 6 weeks spica change. He is also 90% happy with how Emily's hips are developing so she is still brace free for now.

    Olivia will have her next operations around her 3rd birthday in 3 months time and Emily will have another x-ray then.

    I hope everyone is going well. It's great to hear that some of you have come to the end of your journeys and your little ones hips are developing well.

  5. #95

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    Hi everyone,

    Yesterday I was reading your thread and now I am starting to worry about my 12 month old DS2. He has very assymetrical creases and when he crawls he points his right foot sometimes in and sometimes out (if that makes sense), his left foot always points in. He also refuses to walk while we are holding him. He crawls very well and very fast and is confidently cruising and climbing up on things, so I wasn't worried when I noticed the uneven creases a while ago. But after reading your posts I realise that I might have undiagnosed hip displasia myself as one leg is longer than the other and I do have a very definate clunk in my right hip. So now I am getting worried about DS2. I have booked him in with the GP, but the earliest appointment they have is the second of May (country town). I guess my questions are if I should push for an earlier appointment and if anyone has any experience with hip dysplasia diagnosed at 13 months and what kind of treatment we might be looking at? TIA!

  6. #96

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    Hi everyone,

    It has been a few months since I last wrote a thread, so I'm not up to date with everyones progress but I hope all is going well for you all.

    Emma has an appt with the ped ortho surgeon on thursday and hopefully he will discharge us from his care if the x-ray looks good. I have everything crossed as I don't think I can cope with her having more surgery and being in that heavy cast again! Emma is now walking and developing just like all the other kids her age in our mothers group, it is such a massive relief to see this!

    Esme- I hope your concerns about your son's leg creases etc turn out to be nothing at all. You are doing the right thing by getting it checked out. My daughter Emma had uneven leg creases and that was the only indication we could physically see. Has your maternal health nurse ever checked out your son's hips for clicks? I would keep your appt for the 2nd of May unless it is really worrying you, like they say "mother knows best"! Let us know how you get on. Best of luck

    If anyone would like or knows of anyone who may like a spica chair and table set for their child please let me know, my dad made one for my daughter (6 months old at the time) whilst she was in a spica cast. It enabled her to sit up and play with her toys safely and was also a great way to feed her as she didn't fit in a high chair. My dad made 3 chairs/tables and hired them out but now he needs more room in his shed! I have pic's that I can show anyone that is interested.

  7. #97

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    Hi All,

    Can I join this group?

    DD2 has been diagnosed with hip dysplasia and has appointments at the children''s hospital at the end of the month.

    In a coincidence, and perfect timing (if these things can be perfect), the carers at daycare pulled us aside today and said they've been watching DD1 walk and run and think she might have it (and they didnt know that DD2 has it). We also noticed the tippy-toe limp when she walks but until recently thought it was something she was faking or copying from some other kid, becuase she never showed any pain.

    So I called PMH and they said to get DD1 referred too. They also asked about my own hips - and yes I've been having hip pain in my adult years but just thought it was because I've been fat - and said that becuase of my family history of hip problems (both Mum's side and Dad's side) I should get xrayed just in case.

    So...what a journey!


    Edit: PS - if DD1 has it, what happens? She's 2 on the 29th so obviously can''t be put in a Pavlik harness.

  8. #98

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    Hi Angela,

    It's been a while since I've posted in here, but firstly

    To be honest, I'm not sure how they'll treat DD1. Kids can walk in the brace, so there might be one to fit her, if she needs it. I guess it will all depend on what her hips look like.

    My DD was seven weeks when she went into her brace. The first brace they go in, for the first four weeks it's about getting their legs adjusted so they splay out, so if they're lying on their back on the floor, their legs are splayed out and touching the floor. Kind of frog looking (I'm sorry, it's not the nicest example). We had weekly adjustments to get DD's hips to this point, they can't force it in the first week, just do it gradually. Having them adjust to a brace in the first few days is absolutely heartbreaking and hard. All I wanted to do was take it off, it would make her distress go away. But I couldn't. DD's hips were bad, she was in the worst 10% of cases. At this point, the advice I can give you is to have lots and lots and lots more cuddles. Snuggles and skin on skin contact. PM me any time, our "journey" was a long one and I personally went to hell and back, so I'm here if you need a shoulder or someone to shout at. Massive

  9. #99

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    Oh, big hugs from me too Angela xxxx

    It can be really hard, and I think the most difficult part for me was the time before I knew what was going on. You get all sorts of 'worst case' scenarios going through your mind. So big hugs and reassurance, that everything will actually be ok. Most probably different. But you can do it x

    I'm not really sure what they do for older kids- there might be someone on here who knows (OLEM?). Well done on your DD's carers noticing it. DS was diagnosed at 11 weeks and so went into a pavlik. The first couple of days were awful for me. He adjusted way better than I did, but still spent a sooky day sitting there in his harness with his bottom lip almost down on the ground. Bless. PM me anytime, know you have support xx

  10. #100

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    Jack went in for his check up last week, he's in the DBB at night for another 3 months at least. He's not walking or crawling yet, so Dr Little said he wants to wait until there's that blood flow in there that will harden the bone. I'm ok with that, at night is easy peasy- in fact, I'm worried about when he comes out of the harness at night, I think it's part of his sleep association now!

    I AM a little worried he isn't crawling or moving forward yet, especially combined with the fact that he doesn't roll. I've seen him roll, but maybe half a dozen times. I might call his physio and ask a few questions I think.

    I've just put together a little FB album of Jack in his pavlik and DBB, in the hope that it'll help other people who are finding out their bubbas are going into the harness. It's HERE

  11. #101

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    Hi ladies,

    This is my first time so bare with me!

    I am the Mum of a beautiful 14 week old baby girl, Emma. Emma was diagnosed with "clicky hips" at birth. We knew to look out for it because she was breeched and I have a family history of the condition. Although we were aware of the possibility I was not prepared for how heart breaking this process has been.

    Emma went into a Palvik harness at 2 week old. It took quite some adjusting but we got there and she adjusted to it quite well. We then had a ultrasound at 8 weeks to discover her right hip was still dislocated completely, her left is thankfully in place. She was then put into a fixed brace, which again took quite some getting useto. We had another ultrasound this week to discover that the right hip is still not progressing well. The Dr has given us another 4 weeks bonus (well that's what he called it but I'm not totally convinced) before we have another ultrasound and x-ray. If at that time it still hasn't progressed enough she will have the operation and go into the spica cast.

    I was completely shattered by this news as I thought she was progressing well. She is much more settled and her legs aren't coming up like they useto.

    Emma is now into her second brace and she no longer fits into our car capsule. I went car seat shopping but discovered that she wont really be able to fit into a car seat either. The capsule because her legs are too far apart and the car seat because she can't bend and her legs don't bend. Has anyone else come across this problem? Any suggestions?

    I'm also open to any other suggestions/advise regarding the condition. I have found it hard and people don't really comprehend just how hard it is to watch your baby go through this. Plus, the thought of the operation and the plaster scares me sooo much.

  12. #102

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    Hi StaceB and welcome to BB.

    My daughter also had clicky hips at birth and went into her first brace at 7 weeks. She was in that for 4 weeks, it didn't help her so she had an open reduction when she was almost 4 months old and went into a spica cast for just under 6 weeks. From there, she went into a rhino cruiser brace until she was almost 11 months old.

    Our car seat remained the same. We have a safe and sound meridian which took her from birth, and she's still using it today (she turned 2 in March). There is padding in the seat that can be removed if needed. While she was in the spica, she didn't quite fit into the seat, but we were shown at the hospital how to bulk it with blankets. It wasn't ideal, so other than her surgeon's appointments, we pretty much stayed home. You can also get an extension strap for the car seat, to make her seat belt longer. We got ours at the Royal Children's Hospital (we're in Melbourne).

    The operation was the most scary thing I think I've ever been through. The night before, I sobbed and sobbed, so frightened. We had a great surgeon and a great anethesist who had all the time in the world for me. They kept us informed throughout the surgery, with the anethesist coming out to us as soon as it was all over and our daughter was heading into recovery. One week after surgery, they have an MRI to make sure everything stays in place. One week after that, there's another x-ray and then we were left alone until the next step - back into the operating theatre to remove the spica (if all has gone well) or to replace it (if there still needs improvement).

    Living with the spica isn't fun. It's heavy and bulky and after a little while, it really smells. We used newborn nappies with the tabs cut off, that slips into the gap that is left for you, and then a larger nappy goes around the spica. To clean up those nasty poo explosions, we used long stemmed cotton buds. The hospital gave us a special tape to stick on the edges of the cast to help protect it, and to protect bub's skin. We were told to make sure she wasn't on her back all the time to avoid bed sores, but there have been some others in here who haven't been allowed to give baby tummy time. We bought a bean bag to prop her up in for her to be comfortable.

    It is horrible. But there are wonderful upsides. DD can talk amazingly well. We've put it down to her being unable to move around, she concentrated on speaking and learning. Everyone comments on how well she can talk. She knows the alphabet, she can count to 22 and recognises the numbers when we write them down and out of order. Today she told me off because she asked me to draw a 7 for her, I drew 9 and she said "No, try again!" At 14 months old, she could say over 100 words. seeing her learn to roll over in the brace was amazing. Seeing her learn to walk - well, I was beside myself. So yeah, it's a tough road while you're going through it, but it's amazingly sweet when you see them do the very things that you're convinced will never happen.

    I found a huge amount of support here, total understanding and I found someone who has become a great friend too. And you're right. Until I started writing in here, nobody did understand and it was a lonely road.

    Ask away anything you like, there's plenty of us here who will be happy to help. All the best

    ETA - Krystals - how's Jack going?

  13. #103

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    Hi StaceB *hugs*

    We also have a Safe and Sound meridian and have heard of other mothers who have used them It's tough road hun, but always know that you're doing the best thing for Emma (beautiful name by the way!). There's actually a great Facebook page for DDH- PM me if you want the details anyone! and there are heaps of mums and dads with some handy hints and tips with kids in all the different types of braces and spicas. This thread and the facebook page have kept me sane!

    PacRakMG- thanks for asking hun, Jack's doing great- like your DD he's a lot more advanced in his communication than alot of his friends who are all running circles around him! LOL He's still in his brace at night, and will be until at least September, but we're fine with that as long as it's still doing it's job. We took him to the physio and she's not concerned about his lack of crawling or walking yet- but she is worried that he doesn't roll. I think it's actually because he's so bloomin' cruisey that he's happy in whatever position he's in, but now we have to practice In short, we're doing great x

  14. #104

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    PacRakMG - Thank you so much for your words. It was so nice to hear your story and to know that after all the horrible times your little girl does exactly what she's suppose to, plus more by the sounds of it (very impressive vocab for someone so young).

    I haven't been explained much about the process with the cast and operation so your information/advice is wonderful. Atleast I now feel alittle more prepared (well as much as I can be anyway).

    I had been looking at the Safe and Sound Meridian car seats so you've just helped me make the decision to go down that direction.

    I am sure I will have plenty of more questions for you.

    Krystals - Thank you also for your words. I will defiantly PM you regarding the facebook page. Just reading other peoples stories has really eased my mind about all this.

  15. #105

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    Krystals - It's amazing how much they learn to talk isn't it? Glad Jack's doing well. DD took a long time to learn to roll too, but she did it in the end, and in the brace too. She could roll in the brace before she could roll brace-free. Maybe she felt more secure giving it a go that way, don't really know. He sounds like he's going great

    StaceB - Just had another thought too - our surgeon's office had a list of people who had been through it previously, that were happy to talk to people who were about to go through it. They got permission from their previous patients to hand out phone numbers for a support network. Your surgeon may have the same thing set up. Another thought - We bulked up on larger sized jumpsuits and pants. I didn't want to look at the cast, and I knew the clothes we had wouldn't cover it. So we bought larger jumpsuits and leggings, bigger socks too, knowing that if she didn't need surgery, the clothes wouldn't go to waste as she grew anyway.

  16. #106

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    StaceB, just realised you're new!!! You won't be able to pm me- HERE is the link to the FB page. I'm there, feel free to add me as a friend.

    Oh, and the larger suits are priceless!!! Jack only went into a pavlik but the thing was so stiff and his legs were obviously so wide that even though he was only 3 months old, we had him in a size 2 for the first couple of weeks until the harness softened. Ebay will have some good bargains

  17. #107

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    Thanks again ladies. What a great idea about the bigger sizes. I did find the same thing with the harness but I'm going to have to do that again.

    Krystals - haha I was wondering how I PM on here! I've found you on FB and the group. Thanks again.

    PacRakMG - I will defiantly ask the surgeon for names of people in our area (I'm on the Central Coast). I've also ordered the safe and sound car seat today - I can see what you mean about having to pack it with towels etc.

  18. #108

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    Hi girls,

    Think I'm about to start the hip displaysia rollercoaster! My ds2 is 14.5mts and the last few weeks especially I've really noticed him limping and doing a LOT of falling over. I've been taking him to chiro who have said his right leg is 2cm longer than his left, appts haven't been helping him with walking and falling over less plus his right foot is quite turned out. 2 diff chiros there have suggested I get an appt to a paed to get him checked out sooner rather than later. My neighbour who is also a physio has said the same thing.

    Poor little guy, I feel so terrible I haven't noticed anything until now.

    Does anyone have any suggestions on what I can expect with him being older? He's such an on the go boy putting him in plaster is going to knock his world about for sure.

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