Development Dysplasia (DDH)

Vel · 21-08-2013 1:56pm

Doctor at our youngest daughter's 9 month developmental picked up a 'clunky' hip. We got x-rays in Temple Street which revealed she has a dislocated right hip. Attended Crumlin this morning and the plan of action is that she will be fitted with a spica cast in 2 weeks time for 4 months, followed by a brace for 23 hours a day for a number of months, reducing down to brace just at night.

Feeling really upset and emotional at the moment. I know there are worse things that can happen and that she is likely to adjust quite well to being in the cast but it really is something we could do without.

Any tips and suggestions on 'must have' items for a 10 month old in a spica cast would be much appreciated. Also interested to hear from those of you whose child attended a creche while in spica and how you found it. She is due to start creche 2 days a week when she turns 1.

skit490 · 24-08-2013 10:56pm

Hi vel ,
cant offer you specific advice on the spica cast, my little one has been in the pavlik harness and the rhino brace (her dislocation was found at hospital assessment ) so have been quite frequent to temple street. We are now on check up x rays.
So speaking to a few mums who've been there and also from what it was like with the brace, firstly i'd say it does seem to be true that baby will probably cope better than mommy and daddy.And research shows it does the job! so all will be good!
but tips
i think beanbag is probably good investement. I saw an offer on the ones for babies somewhere recently (it has a harness in it so u can strap them in to it. ) though check this will accomodate the cast. BUT cant find the offer, dammit.

car seats. could get the 2way elite, belfast incarsafety has alll the info. i got one while my baby was in the brace and can still use it now she is out of it( she had outgrown her baby seat anyway so got it so if she does end up in cast i will have it - plus its a good rear facing seat,)there are other models too though that the occupational team will advise on. though in temple street they are a nightmare to get hold of, im suprised there isnt a more comprehensive fact sheet provided to be honest. (but then my baby was only in brace so perhaps there is for spica cast.)

for buggy got a mclaren. as has wide base to fit the brace.
main advice i think is to get everything that will allow you to keep mobile , out and about with your little one. the occupational therapy team in temple street will help you on suggestions for high chair alternatives.

Steps is a great site.. uk charity http://www.steps-charity.org.uk/How-We-Help/caring-for-a-child-in-a-hip-spica.html

they have a dvd i think (have seen some demos on youtube http://www.youtube.com/watch?v=kgfOA6An--8)

i reallly wish temple street would have some sort of rental system for all the gear that makes things easier. n i know they're probably too busy etc but it is quite daunting trying to figure out how to get things sorted for baby.

i think in general youtube is your friend. has tips for changing nappies etc. maybe u can show these to ur creche etc.

hopefully ive been some help though u are prob looking for more personal experiences with the cast. (i think someone on this thread had baby in hip spica and was giving away a high chair / table they made for feeding little one while in their cast a few months ago)

best of luck with it.

Vel · 16-11-2013 3:55pm

Thought I'd give a quick update on our situation since my last post. Our daughter has been in her spica cast for approx 9 weeks now. She will stay in it until 13th December when it comes off and she goes into a brace. We aren't quite sure yet how long she will stay in the brace. It will depend on how stable the hip is.

Its been hard and emotional at times but overall it hasn't been half as bad as I expected. She sleeps through the night, flies around the place crawling, can sit up and in general is still the same laid-back happy girl she was pre-cast. She goes to creche two days a week and gets on great there and we have had fantastic support from them.

We are just keeping everything crossed that the hip remains stable and that the end of her hip journey is in sight but at least we know if she does end up needing surgery and further casts down the line, that we can cope better than I ever expected she would.

Hip kids are amazing. They just get on with things and she hasn't let it slow her down.

I can't wait to see her little legs and tummy again in December when the cast comes off!!

duploelabs · 16-11-2013 9:27pm

Vel wrote: »

Thought I'd give a quick update on our situation since my last post. Our daughter has been in her spica cast for approx 9 weeks now. She will stay in it until 13th December when it comes off and she goes into a brace. We aren't quite sure yet how long she will stay in the brace. It will depend on how stable the hip is.

Its been hard and emotional at times but overall it hasn't been half as bad as I expected. She sleeps through the night, flies around the place crawling, can sit up and in general is still the same laid-back happy girl she was pre-cast. She goes to creche two days a week and gets on great there and we have had fantastic support from them.

We are just keeping everything crossed that the hip remains stable and that the end of her hip journey is in sight but at least we know if she does end up needing surgery and further casts down the line, that we can cope better than I ever expected she would.

Hip kids are amazing. They just get on with things and she hasn't let it slow her down.

I can't wait to see her little legs and tummy again in December when the cast comes off!!

Be sure to have lots of skin cream at the ready

Vel · 26-03-2014 10:19am

Further update on our little girl. Check up a month ago revealed that her hip was in a good position and that the socket had deepened although not deep enough. She will be cast/brace free until September and we will find out then if it has continued to deepen or whether she will need surgery to deepen it, which will involve going back into another cast unfortunately. We are going to try to not worry to much and enjoy a summer with her being free.

Would love to hear from other parents as to how their kids are doing on their journey. Our little girl was able to stand and move around the table in her brace and she is doing that now but I notice that she is still inclined to hold her legs in the wide set position of the brace. She will walk a few steps holding our hands or with the walker but keeps her legs very far apart and at times it looks like the foot on the bad side is turning in. I'm going to monitor for another while and then contact the hospital to see what they say. How long did it takes other kids to start walking proeprly? She is 18 months now and raring to go but doesn't seem to have the strength/confidence yet

Vel · 14-10-2014 8:38am

Well we had a summer of freedom and were back for a checkup two weeks ago and got the news we didn't want to hear. Unfortunately the socket hasn't deepened and the angle is completely off so the only option is a salters or pemberton osteotomy to create a new socket. Once this is done she will then have to go back into the cast for 6 weeks and I'm not sure if a brace will be required afterwards. Absolutely dreading the cast again but 6 weeks isn't too bad in the grand scheme of things.

The consultant estimated that it could be up to a 9 month wait for the surgery. It is very hard to have it hanging over her for the next 9 months watching her run around etc. but at the end of the day it is what is need and hopefully it will be successful.

Our hip journey continues!

duploelabs · 14-10-2014 8:40am

Vel wrote: »

Well we had a summer of freedom and were back for a checkup two weeks ago and got the news we didn't want to hear. Unfortunately the socket hasn't deepened and the angle is completely off so the only option is a salters or pemberton osteotomy to create a new socket. Once this is done she will then have to go back into the cast for 6 weeks and I'm not sure if a brace will be required afterwards. Absolutely dreading the cast again but 6 weeks isn't too bad in the grand scheme of things.

The consultant estimated that it could be up to a 9 month wait for the surgery. It is very hard to have it hanging over her for the next 9 months watching her run around etc. but at the end of the day it is what is need and hopefully it will be successful.

Our hip journey continues!

We're in exactly the same boat and our little girl is going to be 3 in December so feel your pain when you watch them run around full of the joys

Vel · 14-10-2014 8:46am

duploelabs wrote: »

We're in exactly the same boat and our little girl is going to be 3 in December so feel your pain when you watch them run around full of the joys

The guilt is terrible! I really wish she didn't have to go through it. Our little one just turned 2 last week so she will be 2.5 - 3 by the time she has the surgery and I imagine that it is going to be much tougher in the cast this time around and hard for her to understand what is happening.

Did your child have a closed reduction first?

duploelabs · 14-10-2014 8:51am

Vel wrote: »

The guilt is terrible! I really wish she didn't have to go through it. Our little one just turned 2 last week so she will be 2.5 - 3 by the time she has the surgery and I imagine that it is going to be much tougher in the cast this time around and hard for her to understand what is happening.

Did your child have a closed reduction first?

Yep, with the cast and then the brace. Although the latter unfortunately didn't last more than a month as she worked out how to take it off. Thing is now we have to look at a different crèche to take her as the one she's in (where she's very happy) can't accommodate her and her extra needs she will have when she's in the cast

Vel · 14-10-2014 10:16am

duploelabs wrote: »

Yep, with the cast and then the brace. Although the latter unfortunately didn't last more than a month as she worked out how to take it off. Thing is now we have to look at a different crèche to take her as the one she's in (where she's very happy) can't accommodate her and her extra needs she will have when she's in the cast

Sorry for all the questions!

What timeframe have you been given for when you might get a date for surgery?

Oh no, that will make it much harder for you and her. Is it that they don't want to accommodate her or that they genuinely can't? The ortho nurses in Crumlin were telling us that they have never known of a creche to refuse to take a child in a cast.

My daughter goes to creche two days a week and will continue to do so hopefully but I do worry about how they will manage. She will be much heavier then and harder to manouvere although the consultant said he'd be very surprised if she didn't manage to walk in the cast.

duploelabs · 14-10-2014 10:33am

Vel wrote: »

Sorry for all the questions!

What timeframe have you been given for when you might get a date for surgery?

Oh no, that will make it much harder for you and her. Is it that they don't want to accommodate her or that they genuinely can't? The ortho nurses in Crumlin were telling us that they have never known of a creche to refuse to take a child in a cast.

My daughter goes to creche two days a week and will continue to do so hopefully but I do worry about how they will manage. She will be much heavier then and harder to manouvere although the consultant said he'd be very surprised if she didn't manage to walk in the cast.

The gave us six months after the decision at the earliest so that's February.
We were told it was up to the discretion of the crèche whether to continue their service given the extra care needed. Which I wouldn't argue with Tbh, it was tricky enough to lift her when she was 8 months old in the cast so it'll be a completely different ball game now

lolli · 06-05-2016 9:47am

Hi everyone, I cant believe its almost 6 years since I started this thread. I'm just looking for some guidance from parents in the same position. My daughter has DDH had an open reduction and a salter osteotomy which was in 2012. She is now 6 and in senior infants we were last in the hospital a year and a half ago where they said her hip socket still is a bit off but it was good and shes doing great. We aren't due to be seen for another yeah and a half.

However the last year or so, every so often she complains of a pain in her hip. I have brought her to my own GP who told me to give her calpol for a week and see how she does. The pain went away. It has came back a few times but it always goes away.

The past couple of weeks shes mentioned to me a few times that her hip is sore but she often wont tell me because shes afraid to go to the doctors. She sometimes tells my Mam or Dad. She told me a couple of days ago that while doing PE in school her hip started really hurting her and she told her teacher, they had to bring her in and let her lie down on a couch. The school teacher said to my Dad yesterday that she complaining about her hip again and that its not like her so they are concerned. Her hip looks slighting swollen and more rounded than her other hip.

I'm not looking for any medical advice, I'm just wondering if there are any other parents who have experienced something similar with DDH.

theLuggage · 06-05-2016 10:45am

Not quite similar. We had a Salter's done at age two and a half. They weren't happy with her hip socket after that and more surgery was on the cards. She had a Pemberton done just in January, age 5.

Complaints of a sore hip after that on the other side - think it might have been compensating for the weaker one just after surgery. Have heard one or two complaints since then on the operated side but not a lot.

Consultant told us to keep an eye an it, so definitely something to discuss on your next appointment. Hopefully she won't be due another surgery.

lolli · 06-05-2016 12:05pm

theLuggage wrote: »

Not quite similar. We had a Salter's done at age two and a half. They weren't happy with her hip socket after that and more surgery was on the cards. She had a Pemberton done just in January, age 5.

Complaints of a sore hip after that on the other side - think it might have been compensating for the weaker one just after surgery. Have heard one or two complaints since then on the operated side but not a lot.

Consultant told us to keep an eye an it, so definitely something to discuss on your next appointment. Hopefully she won't be due another surgery.

Thank you so much for your reply. Yeah my daughters hip socket still isnt right so they did say before more surgery was a possibility. I just hate the thought of her being in pain, you know yourself. Your child has been through the mill as well.

I actually rang the hospital a few minutes ago and they are going to send me out an appointment for her.

January · 06-05-2016 12:14pm

I was just about to suggest ringing the consultants secretary and asking her to be seen sooner. I wouldn't have been happy leaving her so long with pain and noticeable swelling.

Hopefully it's nothing serious and it can be sorted. Poor S, she's been through so much already. x

theLuggage · 06-05-2016 12:38pm

lolli wrote: »

Thank you so much for your reply. Yeah my daughters hip socket still isnt right so they did say before more surgery was a possibility. I just hate the thought of her being in pain, you know yourself. Your child has been through the mill as well.

I actually rang the hospital a few minutes ago and they are going to send me out an appointment for her.

Oh good - let us know how it goes - I'm following with interest! And just to let you know our experience on further surgery was fantastic!

Was dreading it based on the last one and now being older and running around and school etc...thought it would be a nightmare. It was actually way better than I thought, even the pain on it for her. PM me if you want more details if it turns out your little girl needs more surgery.

Just thought would share that because I was dreading mine, for no need as it turns out!

lolli · 06-05-2016 1:42pm

January wrote: »

I was just about to suggest ringing the consultants secretary and asking her to be seen sooner. I wouldn't have been happy leaving her so long with pain and noticeable swelling.

Hopefully it's nothing serious and it can be sorted. Poor S, she's been through so much already. x

Thanks so much

Yeah I told them about the swelling and pain. They said its normal for a child who has had that surgery. I suppose the hard part is that no one wants to see their child in pain. You know yourself. Hopefully I will get the appointment soon.

lolli · 06-05-2016 1:45pm

theLuggage wrote: »

Oh good - let us know how it goes - I'm following with interest! And just to let you know our experience on further surgery was fantastic!

Was dreading it based on the last one and now being older and running around and school etc...thought it would be a nightmare. It was actually way better than I thought, even the pain on it for her. PM me if you want more details if it turns out your little girl needs more surgery.

Just thought would share that because I was dreading mine, for no need as it turns out!

Thank you so much, they said its normal for DDH kids to have some pain, I just dont like seeing her in pain. Its such a long journey! I will let you know when I get an appointment and what they say.

She'd trying to keep up with other kids in school and maybe shes not as able as them. Will your child need further surgery or is it all finished now?

duploelabs · 06-05-2016 1:58pm

My Daughter, A, was diagnosed with a single hip DDH when she was 8 months old. Since then she has had two operations and been in a cast/brace for about 8 months. Now here's the crux, each time we've gone for a check up and xray we've been told that it's not fixed, that the socket hasn't been developed, but they just want to see if it does develop and she won't need the full open surgery to develop the socket and make it more snug.
A, is now 4 since December and on our last check up we were told by Dr. Kelly that she definitely needs the surgery and we'll get a date in 2-4 weeks. We are very anxious to get this done as...
1. She's just below the weight threshold for degradable pins so doesn't need a second operation to remove them.
2. She starts junior infants in September so want her to be fully fit and up for school.
3. Due to the length of time this has been dragged out as well as our talk and familiarisation of doctors, operations, hospitals etc she's developed an anxiety and eczema issue about it and has regressed in potty stuff etc.

My point/question is that that last meeting/consultation was 6 weeks ago and each time we ring up to query about getting a date, we get a generic fob off or 'getting our surgery times together', consequently we are pulling our hair out trying to make this happen as it's affecting all of us, not to mention our poor little girl. So does anyone know a definitive person to talk to in Crumlin who has a track record of being a proactive administrator and chasing up on a case rather than just giving a fob off. Please

lolli · 06-05-2016 2:33pm

duploelabs wrote: »

My Daughter, A, was diagnosed with a single hip DDH when she was 8 months old. Since then she has had two operations and been in a cast/brace for about 8 months. Now here's the crux, each time we've gone for a check up and xray we've been told that it's not fixed, that the socket hasn't been developed, but they just want to see if it does develop and she won't need the full open surgery to develop the socket and make it more snug.
A, is now 4 since December and on our last check up we were told by Dr. Kelly that she definitely needs the surgery and we'll get a date in 2-4 weeks. We are very anxious to get this done as...
1. She's just below the weight threshold for degradable pins so doesn't need a second operation to remove them.
2. She starts junior infants in September so want her to be fully fit and up for school.
3. Due to the length of time this has been dragged out as well as our talk and familiarisation of doctors, operations, hospitals etc she's developed an anxiety and eczema issue about it and has regressed in potty stuff etc.

My point/question is that that last meeting/consultation was 6 weeks ago and each time we ring up to query about getting a date, we get a generic fob off or 'getting our surgery times together', consequently we are pulling our hair out trying to make this happen as it's affecting all of us, not to mention our poor little girl. So does anyone know a definitive person to talk to in Crumlin who has a track record of being a proactive administrator and chasing up on a case rather than just giving a fob off. Please

I'll pm you

cruais · 07-05-2016 9:53am

Hi folks

My son was born 3 weeks early and they discovered in hispital that he had a mild form of hip dysplasia. Between the jigs and the reels we were referred to Temple St where he was put in a brace for 3 months.

When we returned after the 3 months, we were told to keep him in the brace for a further 6 weeks.

Our last appointment with them, we were given practically the all clear. His hip was fine but he still hadnt developed his sockets. We will have to attend until he is 2 and was told not to worry.

Fast forward to the other day, where he had to attend the nurse for his developmental check. My husband brought him and the nurse noticed that he had an extra crease on the back of his thigh.

She said that was a sign of hip dysplasia and if we werent already attending temple st, she would be sending us down.

Do you think Im right to worry now? Temple St gavenme the impression all was fine and im worried that his hip has dislocated.

Sorry for the long post!

lolli · 10-05-2016 11:49am

cruais wrote: »

Hi folks

My son was born 3 weeks early and they discovered in hispital that he had a mild form of hip dysplasia. Between the jigs and the reels we were referred to Temple St where he was put in a brace for 3 months.

When we returned after the 3 months, we were told to keep him in the brace for a further 6 weeks.

Our last appointment with them, we were given practically the all clear. His hip was fine but he still hadnt developed his sockets. We will have to attend until he is 2 and was told not to worry.

Fast forward to the other day, where he had to attend the nurse for his developmental check. My husband brought him and the nurse noticed that he had an extra crease on the back of his thigh.

She said that was a sign of hip dysplasia and if we werent already attending temple st, she would be sending us down.

Do you think Im right to worry now? Temple St gavenme the impression all was fine and im worried that his hip has dislocated.

Sorry for the long post!

Hi

I would go to your GP and request an XRAY just to make sure that everything is ok. The way I noticed my daughters Dysplasia was by the length of her legs, one was longer than the other. She also has a shallow hip socket too for which she had surgery on already. If your not happy ask your GP to refer you back to the hospital sooner.

lolli · 11-05-2016 12:51pm

I got an appointment in the post yesterday for August.

January · 11-05-2016 12:55pm

Couldn't make it up... your child is expected to remain in pain until August. No way, wouldn't be having it.

lolli · 12-05-2016 10:20am

January wrote: »

Couldn't make it up... your child is expected to remain in pain until August. No way, wouldn't be having it.

I was told its normal for her to have pain

They did tell me if she gets really bad to bring her to a and e. Her teacher told my Mam yesterday that she asked to sit out of PE yesterday and even her teacher said shes normally the first one out the door.

I really hate the thoughts of her being in any form of pain, even though its supposed to be "normal"

theLuggage · 13-05-2016 9:53pm

Lolli what hospital do you go to. Pick a day and organise yourself and off ye go into A and E. Total pain but would put your mind at ease I think. Exaggerate the pain and you might be seen quicker.

We were never told anything about pain and it being normal. Maybe that is the case but sounds mad to me. Why should she be in pain because her socket isn't developed? Does she have pins that need to be removed. It's literally the only thing that would make sense to me. Unless it's the movement hurting because the socket is not giving good coverage. Again if that's the case, probably a surgery and the sooner you are penciled in for that the better.

theLuggage · 13-05-2016 10:07pm

duploelabs wrote: »

My Daughter, A, was diagnosed with a single hip DDH when she was 8 months old. Since then she has had two operations and been in a cast/brace for about 8 months. Now here's the crux, each time we've gone for a check up and xray we've been told that it's not fixed, that the socket hasn't been developed, but they just want to see if it does develop and she won't need the full open surgery to develop the socket and make it more snug.
A, is now 4 since December and on our last check up we were told by Dr. Kelly that she definitely needs the surgery and we'll get a date in 2-4 weeks. We are very anxious to get this done as...
1. She's just below the weight threshold for degradable pins so doesn't need a second operation to remove them.
2. She starts junior infants in September so want her to be fully fit and up for school.
3. Due to the length of time this has been dragged out as well as our talk and familiarisation of doctors, operations, hospitals etc she's developed an anxiety and eczema issue about it and has regressed in potty stuff etc.

My point/question is that that last meeting/consultation was 6 weeks ago and each time we ring up to query about getting a date, we get a generic fob off or 'getting our surgery times together', consequently we are pulling our hair out trying to make this happen as it's affecting all of us, not to mention our poor little girl. So does anyone know a definitive person to talk to in Crumlin who has a track record of being a proactive administrator and chasing up on a case rather than just giving a fob off. Please

Sympathies, our story is similar to yours (in Temple St though) Diagnosed at 8 months, surgeries didn't work. On the list and hoping to get it done before she started school this year. She didn't. She had hers in January and recovered really well from it. She was off school for a week and two days including the operation itself

Just on your post I know the delays can be frustrating and I would be concerned about the affect on your daughter. Does the hospital advise you on any of these, have they offered any help on them? She obviously is traumatised, the poor mite, but she will get through it. It might be good to see if there are any supports or advice there though. I doubt there will be but you never know if you don't ask. I personally found the support received in looking after a baby in a cast to be appalling looking back. But first baby and we were clueless. I wonder if a well drafted letter from your GP to consultant would help in any way in speeding things along for her??

Try not to worry yourselves or let the frustration get to you, in case your daughter picks up on that also. Honestly I was dreading ours getting her last operation and disrupting school etc It really couldn't have gone better and was by far the easiest recovery of them all. She's also had shoulder surgery so she's been in hospital a good few times. We are lucky she's dealt with it so well.

Temple St is the same with surgeries, very slow to give dates. They only know the schedule a week or two in advance so they genuinely do not know either sometimes how long it will be. However they have always been good in giving me an idea of when...such as ring back in August and we'll know more. Now they usually have the same message(ring back just before christmas) but you can turn off the worrying until August

Even if someone could give you that much?

lolli · 16-05-2016 3:56pm

theLuggage wrote: »

Lolli what hospital do you go to. Pick a day and organise yourself and off ye go into A and E. Total pain but would put your mind at ease I think. Exaggerate the pain and you might be seen quicker.

We were never told anything about pain and it being normal. Maybe that is the case but sounds mad to me. Why should she be in pain because her socket isn't developed? Does she have pins that need to be removed. It's literally the only thing that would make sense to me. Unless it's the movement hurting because the socket is not giving good coverage. Again if that's the case, probably a surgery and the sooner you are penciled in for that the better.

My daughter attends Crumlin. When they done her last operation whatever they used they said it was like wires that would dissolve, if that makes sense. Yeah I didnt think pain could be normal. If it gets any worse I will bring her to a and e. Its heartbreaking to see them in any form of pain. Shes after going through a big growth spurt lately, and they did say to me previously that they might need to do the surgery again when she goes.

theLuggage · 16-05-2016 4:19pm

lolli wrote: »

My daughter attends Crumlin. When they done her last operation whatever they used they said it was like wires that would dissolve, if that makes sense. Yeah I didnt think pain could be normal. If it gets any worse I will bring her to a and e. Its heartbreaking to see them in any form of pain. Shes after going through a big growth spurt lately, and they did say to me previously that they might need to do the surgery again when she goes.

Yeah dissolveable makes sense. Could be the growth spurt so has exaggerated what they weren't happy with if they were talking about further surgery. God love her, yeah it's awful when they are in pain. We were lucky so far and has only been post op pain that went after a while.

lolli · 16-05-2016 4:27pm

theLuggage wrote: »

Yeah dissolveable makes sense. Could be the growth spurt so has exaggerated what they weren't happy with if they were talking about further surgery. God love her, yeah it's awful when they are in pain. We were lucky so far and has only been post op pain that went after a while.

Fingers crossed it stays that way for your little one

I guess I just want to know if we are facing further surgery down the line. Shes off school this week so she can have a rest. Hopefully that'll help a bit

Development Dysplasia (DDH)

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