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Development Dysplasia (DDH)

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    #62
    January
    Closed Accounts Posts: 23,862 ✭✭✭✭January


    I'll be joining you guys for a while I think, at least until we find out if Saoirse has DDH... hoping against hope...

    Extra crease in left leg, leg is shorter than the other one (PHN said "knee's are not level"), reluctance to bear weight on the left leg, if she tries to walk it kind of drags behind her or if she's standing it'll be the first to give way...

    Just waiting on appointment for xray at the moment...


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    #63
    the goon
    Registered Users Posts: 457 ✭✭the goon


    Hi, just to let you know how we got on. She had the xray Wednesday a week ago and we were told we will have to wait a couple of weeks for the results! What a country...


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    #64
    lolli
    Registered Users Posts: 1,173 ✭✭✭lolli


    Wow thats strange, we got the results within 10 minutes!

    the goon wrote: »
    Hi, just to let you know how we got on. She had the xray Wednesday a week ago and we were told we will have to wait a couple of weeks for the results! What a country...


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    #65
    lolli
    Registered Users Posts: 1,173 ✭✭✭lolli


    Fingers crossed she doesnt. x Waiting is so hard but try not to worry yourself too much.

    January wrote: »
    I'll be joining you guys for a while I think, at least until we find out if Saoirse has DDH... hoping against hope...

    Extra crease in left leg, leg is shorter than the other one (PHN said "knee's are not level"), reluctance to bear weight on the left leg, if she tries to walk it kind of drags behind her or if she's standing it'll be the first to give way...

    Just waiting on appointment for xray at the moment...


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    #66
    Melion
    Banned (with Prison Access) Posts: 10,259 ✭✭✭✭Melion


    Just a quick update on Caoimhe, she has been in the cast now for nearly 3 months. It really has flown by, i know people will always say it but it really is true, kids adjust to things so much better than adults. She took it all in her stride straight away. The way im looking at it is, she will ideally live 80-90 years, these few months will be nothing in the grand scheme of things.

    The one thing i was wondering, if she were to get the cast off tomorrow, how long would it be before she is able to walk again? Obviously different for every child but i cant find anything online similar to her situation(running around in the ward before being taken down to theatre and waking up without the use of her legs)


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    #67
    DeadSkin
    Registered Users Posts: 2,904 ✭✭✭DeadSkin


    Melion wrote: »
    Just a quick update on Caoimhe, she has been in the cast now for nearly 3 months. It really has flown by, i know people will always say it but it really is true, kids adjust to things so much better than adults. She took it all in her stride straight away. The way im looking at it is, she will ideally live 80-90 years, these few months will be nothing in the grand scheme of things.

    The one thing i was wondering, if she were to get the cast off tomorrow, how long would it be before she is able to walk again? Obviously different for every child but i cant find anything online similar to her situation(running around in the ward before being taken down to theatre and waking up without the use of her legs)

    Our daughter was just shy of her first birthday when she got the cast on. Had it on for about 20 weeks, the cast didn't work and it took her a over a month to get started at walking. She wasn't walking before diagnosis, so we weren't expecting much.

    Think it was 6/7 months later she had her osteotomy, so same situation, running about the ward, she held my hand walking down to theatre and wheeled back up in an awkward looking cast/splint. She had that on for 6 weeks and it took her a few weeks alright to get back on her feet when it was removed.

    They are amazing alright what they can handle, they just seem to get on with it. And it's that, that I think really helps you as a parent to deal with it also.

    All the best.


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    #68
    Melion
    Banned (with Prison Access) Posts: 10,259 ✭✭✭✭Melion


    Caoimhe was 18 months when she was diagnosed(disgraceful IMO) and she was put in the cast a month later. Did they say why the cast didnt work? I would hate to think that she could go through all this only for her to need an operation in a few months time.


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    #69
    DeadSkin
    Registered Users Posts: 2,904 ✭✭✭DeadSkin


    Melion wrote: »
    Caoimhe was 18 months when she was diagnosed(disgraceful IMO) and she was put in the cast a month later. Did they say why the cast didnt work? I would hate to think that she could go through all this only for her to need an operation in a few months time.

    We were told at the start that the cast may not work in her case. There was a good inch in the difference in the length of her legs. The x-ray did show that the hip socket was very shallow & the ball was out of position and positioned up higher, hence one leg shorter than the other.

    The consultant did tell us that surgery may be a possibility but always a last resort. Each time we went back to get the spica cast replaced he was happy with the progress, but always emphasized that surgery again was possible.

    Can I ask, has your daughter been in the spica cast & have ye had to go back every 6 weeks to get it changed?

    Each case is different & wish ye the best.


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    #70
    Melion
    Banned (with Prison Access) Posts: 10,259 ✭✭✭✭Melion


    DeadSkin wrote: »
    We were told at the start that the cast may not work in her case. There was a good inch in the difference in the length of her legs. The x-ray did show that the hip socket was very shallow & the ball was out of position and positioned up higher, hence one leg shorter than the other.

    The consultant did tell us that surgery may be a possibility but always a last resort. Each time we went back to get the spica cast replaced he was happy with the progress, but always emphasized that surgery again was possible.

    Can I ask, has your daughter been in the spica cast & have ye had to go back every 6 weeks to get it changed?

    Each case is different & wish ye the best.

    Yup, she has been in it since February 23rd. Has been changed once so far, she is back in again on Thursday for another change.


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    #71
    lolli
    Registered Users Posts: 1,173 ✭✭✭lolli


    DeadSkin wrote: »
    The x-ray did show that the hip socket was very shallow & the ball was out of position and positioned up higher, hence one leg shorter than the other.

    My daughters hip socket is still shallow. She still cant stand or walk. They wont decide until September if she needs the big op. I hate waiting. Shes getting physiotherapy.


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    #72
    lolli
    Registered Users Posts: 1,173 ✭✭✭lolli


    Melion wrote: »
    Yup, she has been in it since February 23rd. Has been changed once so far, she is back in again on Thursday for another change.

    6 weeks seems so long doesnt it. I always brought my lady up at 4 weeks. Its so hard to keep it clean!!


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    #73
    January
    Closed Accounts Posts: 23,862 ✭✭✭✭January


    Anyone else's little ones hip not click when the doctor was examining them? Brought little one to the GP today and it was a locum doctor and not our usual one... he checked her over, said her hips were moving normally and that the crease in her leg could be from wearing her clothes too tight (I'm sorry, but that's bull because she doesn't wear tight clothes and it's been there since before she was 9 months old when I first noticed it).

    He said once she is walking supported and standing supported she should be fine but I still pushed for the xray, he made me feel like an over protective mother and told me I shouldn't be losing sleep over it...

    I've to bring her to Temple Street next week and they will xray her on the spot if I show the letter according to him...


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    #74
    Chuchu
    Registered Users Posts: 344 ✭✭Chuchu


    Hi January... my GP told us in cases where it is not severe (like ours i.e. was not dislocated) it can be VERY HARD for a regular physician to pick it up however 'good' they are. There can be ligament clicks and the likes that can confuse the issue. Get the xray done if you can for peace of mind at least. Looks like it'll be surgery for us at the end of the summer :( Feel free to PM me at any stage if you like.


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    #75
    lolli
    Registered Users Posts: 1,173 ✭✭✭lolli


    January, don't you ever feel like that you are doing anything wrong. Its better to be safe than sorry.

    My daughters hip was completely dislocated and it was clicking (it still does) but Chuchu is right it can be missed if its not severe.

    You are doing the right thing by making sure. Its better to get it treated as soon as possible if there is something wrong.

    My daughter is currently getting physio but she still wont bare weight/stand let alone walk.

    Good luck with the xray let me know how you get on


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    #76
    Melion
    Banned (with Prison Access) Posts: 10,259 ✭✭✭✭Melion


    So after nearly 3 months in the Spica, we were told the other day that Caoimhe is going to need surgery on both hips. She is getting the cast off on Wednesday in preperation for the first operation on June 8th, she will be back in the spica for 6-8 weeks before the operation on her right hip.

    We are going to the legal department of the Citizens Advice office tomorrow, someone is paying for this. The absolute disgraceful negligence shown towards me, Caoimhes mother and most importantly, my daughter, isnt going to go unpunished. All this could have been avoided if someone with half a brain had copped it in the 7-8 checkups she had before it was discovered.


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    #77
    Melion
    Banned (with Prison Access) Posts: 10,259 ✭✭✭✭Melion


    January wrote: »
    Anyone else's little ones hip not click when the doctor was examining them? Brought little one to the GP today and it was a locum doctor and not our usual one... he checked her over, said her hips were moving normally and that the crease in her leg could be from wearing her clothes too tight (I'm sorry, but that's bull because she doesn't wear tight clothes and it's been there since before she was 9 months old when I first noticed it).

    He said once she is walking supported and standing supported she should be fine but I still pushed for the xray, he made me feel like an over protective mother and told me I shouldn't be losing sleep over it...

    I've to bring her to Temple Street next week and they will xray her on the spot if I show the letter according to him...

    Dont you dare leave the hospital without an xray being done. The HSE and people who "examined" my daughter have a lot to answer for. What they have done to her is going to effect her for the rest of her life.


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    #78
    January
    Closed Accounts Posts: 23,862 ✭✭✭✭January


    Hope things work out with poor little Caoimhe Melion, definitely seek legal advice. Let us know how she gets on


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    #79
    cynder
    Registered Users Posts: 4,128 ✭✭✭cynder


    Jeez thats mad, when i voiced concern (over the phone to the PHN) over my then 2 year olds hip, he was seen the next day by the area medical doctor and sent straight to the xray department, the area medical doctor said she thought he was ok but would send him as is creases were asymmetrical.

    His hips were fine, but at age 4 his creases are still asymmetrical, extra crease under his bum aswell, we recon he has one leg longer than the other leg by a few millimeters.


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    #80
    Chuchu
    Registered Users Posts: 344 ✭✭Chuchu


    So sorry to hear this Melion... as you said she will have these hips for life it is so important. :mad:


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    #81
    DeadSkin
    Registered Users Posts: 2,904 ✭✭✭DeadSkin


    Melion wrote: »
    So after nearly 3 months in the Spica, we were told the other day that Caoimhe is going to need surgery on both hips. She is getting the cast off on Wednesday in preperation for the first operation on June 8th, she will be back in the spica for 6-8 weeks before the operation on her right hip.

    We are going to the legal department of the Citizens Advice office tomorrow, someone is paying for this. The absolute disgraceful negligence shown towards me, Caoimhes mother and most importantly, my daughter, isnt going to go unpunished. All this could have been avoided if someone with half a brain had copped it in the 7-8 checkups she had before it was discovered.

    Sorry to hear Melion. From your sig, I see your daughter will be about the same age our daughter had her surgery.
    You will be absolutely amazed what they can put up with, the first week is really hard because she will be in pain.
    Our daughter was put in a metal splint that ran from the top of her thigh to about a foot past her foot. Reason for this was to make it difficult for her to move around & that she wouldn't be able to stand.

    Were you given any explanation of the surgery & what cast she maybe put in after surgery.
    Also, request an occupational therapist to visit you, we found it helped a lot & we got a specially made table/desk for her time in the cast. It meant we could keep her entertained without worrying that she would fall & she was really comfortable in it.

    Again every case is different, but If you like I could post you a picture of the splint.
    Good luck with it all.


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    #82
    Melion
    Banned (with Prison Access) Posts: 10,259 ✭✭✭✭Melion


    DeadSkin wrote: »
    Sorry to hear Melion. From your sig, I see your daughter will be about the same age our daughter had her surgery.
    You will be absolutely amazed what they can put up with, the first week is really hard because she will be in pain.
    Our daughter was put in a metal splint that ran from the top of her thigh to about a foot past her foot. Reason for this was to make it difficult for her to move around & that she wouldn't be able to stand.

    Were you given any explanation of the surgery & what cast she maybe put in after surgery.
    Also, request an occupational therapist to visit you, we found it helped a lot & we got a specially made table/desk for her time in the cast. It meant we could keep her entertained without worrying that she would fall & she was really comfortable in it.

    Again every case is different, but If you like I could post you a picture of the splint.
    Good luck with it all.

    From what i could gather last week, she will be going back into a Spica after the surgery, my head was in a bit of a spin so may have misunderstood that.

    Who would i say it to about the occupational therapist?

    Where did you get the table? We have been looking for one that would suit her for the last 3 months but couldnt find any. She has a plastic chair that is perfect but she is using the couch as her "table".

    Would you mind posting up a picture of that splint? Just so i dont get a shock in 2 weeks time if she does get one rather than the Spica.

    We are in Croom tomorrow morning to get her cast removed and have her put in a brace for 2 weeks before the surgery. Im looking forward to being able to bath her properly a few times :D


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    #83
    Loonie
    Registered Users Posts: 35 ✭Loonie


    Hi Everyone, I've been lurking here for a while! My daughter was diagnosed with DDH almost 3 months ago at 10 months, and is now in her second spica. Is anyone else being treated at Temple Street? We're going back in 5 weeks for her final cast, but one doc says she can then go into the brace instead, another says no, 6 more weeks in the cast. Frustrating and confusing, to say the least!

    Anyway, a bit about my daughter she had uneven creases and a slightly shorter leg, but no click. It was when I mentioned to a physio (she has club foot as well, so physio for that) that she stands on one foot she suggested we get an xray. 2 Ortho surgeons in TS thought she looked fine, but sent her for xray just in case, and her hip was very obviously out. They seem to think she will still need the osteotomy at 18 months-ish, as this won't make her hip 100%.


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    #84
    January
    Closed Accounts Posts: 23,862 ✭✭✭✭January


    I'll be attending Temple Street for xray with my little one, although can't get in til next Monday with Queen visit. So if there is something wrong I'll be attending there for treatment too.


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    #85
    DeadSkin
    Registered Users Posts: 2,904 ✭✭✭DeadSkin


    Melion wrote: »
    From what i could gather last week, she will be going back into a Spica after the surgery, my head was in a bit of a spin so may have misunderstood that.

    Who would i say it to about the occupational therapist?

    Where did you get the table? We have been looking for one that would suit her for the last 3 months but couldnt find any. She has a plastic chair that is perfect but she is using the couch as her "table".

    Would you mind posting up a picture of that splint? Just so i dont get a shock in 2 weeks time if she does get one rather than the Spica.

    We are in Croom tomorrow morning to get her cast removed and have her put in a brace for 2 weeks before the surgery. Im looking forward to being able to bath her properly a few times :D

    By luck we found out about an occupational therapist. It was the day after her surgery, we were about to go home & a nurse brought the subject up about getting help at home. The nurse forwarded our details onto the therapist & also gave us a number to ring.

    The therapist called out and said she could get us the desk/chair. Helped us out on how to lift her, make her comfortable in the car. We had to buy a new car seat alright.
    What annoyed us was, we were told we could've gotten this help the first time she went into a spica :mad:

    I'll pm you some pics.

    I hear ya about wanting to give her a bath properly :)


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    #86
    January
    Closed Accounts Posts: 23,862 ✭✭✭✭January


    DeadSkin, can you recommend a car seat just in case I need to start researching for Saoirse? She's 15 months and forward facing... I was on a website that mentioned the BabyStart ones from Argos are good and I have one of those already... but if you think something else is better I'll look into it... also a buggy :o I have the Petite Star Zia 4 at the moment which is fairly wide but not sure it would suit...

    I know I'm probably getting way ahead of myself but would just like to be prepared in case...


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    #87
    DeadSkin
    Registered Users Posts: 2,904 ✭✭✭DeadSkin


    January wrote: »
    DeadSkin, can you recommend a car seat just in case I need to start researching for Saoirse? She's 15 months and forward facing... I was on a website that mentioned the BabyStart ones from Argos are good and I have one of those already... but if you think something else is better I'll look into it... also a buggy :o I have the Petite Star Zia 4 at the moment which is fairly wide but not sure it would suit...

    I know I'm probably getting way ahead of myself but would just like to be prepared in case...

    Check out post 33 in this thread. A Britax Evolva car seat.
    When she was in the splint we got a loan of a pretty hefty 3 wheeler from a friend, can't remember the brand. I'll post back if we can remember. Good luck.


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    #88
    Loonie
    Registered Users Posts: 35 ✭Loonie


    January wrote: »
    DeadSkin, can you recommend a car seat just in case I need to start researching for Saoirse? She's 15 months and forward facing... I was on a website that mentioned the BabyStart ones from Argos are good and I have one of those already... but if you think something else is better I'll look into it... also a buggy :o I have the Petite Star Zia 4 at the moment which is fairly wide but not sure it would suit...

    I know I'm probably getting way ahead of myself but would just like to be prepared in case...

    We had 2 buggies when my daughter went into her cast. She doesn't fit into the Baby Elegance one at all, it's way too deep for her short little legs. But she almost fit into the Maclaren Techno I'd bought second hand for travelling. We've got a small towel behind her to help her fit properly. Bring a pillow or a blanket with you, to help adjust her in the seat if needed. You really won't know until the cast is on what she'll fit in... and each cast is different, so we don't get bored :rolleyes:


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    #89
    MusRo
    Registered Users Posts: 39 ✭MusRo


    Hi everyone
    Just had a chance to scan through some of the discussion so apologies if something similar has been said before. We were very luck that our daughters dislocated left hip was picked up at a 6 week check (I live in the UK). She was in a Pavlik harness for 12 weeks and my hubby and I were distraught as there was no warning that anything was wrong. One minute I was holding my little one normally and a few minutes later I was awkwardly holding my strapped up baby and told I couldn't bath her until it came off. I guess all of you on here will have gone through the same huge range of emotions we did, so no need to reiterate. The only advice I can give is that it will get better and the little ones really do forget. We had no guarantee that the harness would work, but thankfully we were lucky and it seems to have worked for our daughter. My heart goes out to all of you that have had little ones go through operations and longer stretches of time in various splints and harnesses. Keep focused on that day some time in the near future that they will be happily running around the place. Our daughter is now happily toddling around holding onto her walker :). Hugs MusRo


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    #90
    January
    Closed Accounts Posts: 23,862 ✭✭✭✭January


    Saoirse had her xray today, nearly flipped herself off the table... had to get a nurse to help us hold her down!

    Should have results next week


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    #91
    Moonbeam
    Moderators, Education Moderators, Society & Culture Moderators Posts: 18,953 Mod ✭✭✭✭Moonbeam


    Fingers crossed.


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