Hip Dysplasia

[Suezt]

Hi. I'm new on here. This site is so huge - I hope I'm posting this message in the right spot

I'm just really looking for some answers. Last Tuesday my 9mth (28/8/06) old daughter Sophie was fitted with a Rhino brace for hip dysplasia. It was quite a shock as she'd been diagnosed at 4mths and seeing they didnt' do anything I thought she would be ok at her next check up. But it wasn't. I spent the next 2 days in tears and trying to work my head around "the brace". It's been a week now and I'm feeling so much better and it's so reassuring to see Sophie adapt so well to the brace. She's a little trooper and hasn't really shown any signs of it interfering with her little life .... except sleeping! Both her and I haven't slept in a week! She naps ok through the day. But ... she keeps waking every 1/2 hour through the night and I was wondering is this normal? Is it the brace? Does it get easier? Are there any solutions to help her sleep better or sleeping positions? Also, whilst I'm asking questions - how long did your children have to be in the brace and if so - did they crawl/walk etc whilst wearing it? Sorry about all the questions. Susan

[minimatron]

Hi Susan,
There is a hip dysplasia support thread if you scroll down the main page a bit. I'm sorry to hear youre having such a hard time of it all. I wish i could give you advice on the sleeping issue, but my little one is only 8 weeks old, and only sleeps for 4 hours max with the pavlik harness on, but i dont think it means anything coz shes so young> Sorry.
Come join us
cheers
melissa

[cannedemma]

Hi,
I know this thread is quite old but i was hoping to find out what happened with you daughter and her hip problems? My daughter is 6 months and has had 2 previous checks and they believed her hips were improving by themself so like you when we went on Monday and found there is a problem it was a big shock...

She has had the brace on since we went on monday and she seems to be ok with it but is having issues with sleeping as well... she is waking frequently during the night and i cannot settle her back to sleep in her own bed, the only way i can get any sleep is to bring her to my bed. I am finding this very distressing and am concerned about her development being delayed but also about her emotional development...

Do you have any tips for how i can help her be a bit more comfortable at night? Also i would like to know how your daughter is now? Was it a long process? Did she walk or crawl in the brace?

I hope that this gets to someone??

Thanks Emma.

[Suezt]

Hi Emma. Great that you posted on here. It's been awhile since I've been here.

Sophie is doing wonderful. She's been out of the brace 9 months now and within 4 months of being out of the brace she had totally caught up to her peers. Walking, running, jumping etc. Within 11 weeks she started walking. You look back now and you wouldn't have even known that she had any problems with her hip. She came out of the brace when she was 15mths old and we went back to the O/S when she was 2 years old and he gave her the perfect result we wanted to hear. I burst out into tears and cried all the way home! He said the only problem she will face later in life is with her children and that they are to be x-rayed no matter what at 2 months of age (boy & girl). He also said too, that h/d is more prevalent in first cousins.

Sleep was a problem at the start. I remember bringing her into bed with me too and laying her on my tummy which seemed the only way to help her sleep (not me though!!!). It only took 1 week - 10 days for her to adjust in her cot - in the end I had to get tough (as I was so sleep deprived!) and let her cry it out. She was sleeping thru before the brace went on - so I knew she could do it. Also, I placed a rolled up towel under her feet (under the sheet) as I found her feet dangled in the air without it. This just helped her feet rest flat. Also I introduced a pillow to make life a little more comfortable for her.

Sophie learnt to bum shuffle in her brace. It was so funny, but they do learn to adjust so quickly (more than the mum and dad) and get around in their own little way. Towards the end too she was pulling herself up to stand in the brace. She was in the brace 7 months total (8mths - 15mths). We did see a change in her personality once she came out of the brace (maybe that was just Sophie - not sure if the others had the same). But she just seemed to come out of her shell, be more happy, mischievious, smile etc. She was quite a serious little girl in her brace, with not too many smiles. I thought that was just her personality - but it obviously was having some effect on her.

The only thing development wise she struggled with was rolling. They can learn to roll in the brace (the o/s said they can do anything in the brace that other kids do) - Sophie just couldn't do it. When the brace came off (which too was hard - was just as traumatic as when the brace went on!) she struggled sleeping as she would move around in the cot so much (where as before she was just stuck in the 1 position) and get stuck in various positions and then was unable to get herself out as she couldn't roll. It only took a week or so for her to learn to roll - but like at the start (when the brace went on) it was very tough to get any sleep.

Now it's all a thing of the past. I'm so grateful now that they found the hip dysplacia when she was a baby and everything is fixed!

Hope I've helped. Feel free to ask more questions, cry with us, share, celebrate etc. I found this forum invaluable and the ladies on here are just wonderful.
love and huge humungous hugs
Susan
xxxx

[SJL]

My daughter should have had the brace when she was little but that never happened when she was with her birth parents so now that she is growing badly we are having a lot of issues and possibly facing surgery with in a couple of years (hopefully her second skin suit and AFO's (ankle-foot orthotics) will delay surgery or prevent it altogether, but unlikely).
So no matter how tough things get it is a lot better for both bubs and the family to go through the braces now as opposed to surgery and pain latter on. Your bubs wont remember the brace in a few years but if they have to have surgery they will have scares for life.


Good luck to you and bubs.

Sjl

[cannedemma]

Hi Susan!

Thanks so much for your reply... You have made me feel alot better about Charlotte's situation... So far she is not doing anything much in the brace and is not tolerating being on her stomach much...

I had a great night with her last night, i folded a big quilt up into 4 and put it under the sheet in her cot because the previous night she would not sleep at all and i, like you had to have her in bed with me... The softness seems to have supported her legs a bit and made her a bit more comfy and she slept right through!!

I think i have come to terms with the delays in development and everyone i speak to has advised me that they catch up really quickly so that is the main thing! I am still a little concerned about her emotional development like as you said with Sophie, Charlotte seems to have become a little less happy and i struggle to get her to smile and giggle now so i am hoping that this will improve as well.

I see a big change in her when i give her the hour a day without the brace, she is sooooo happy and playful and stuff... i am hoping that it is just an adjustment phase because it has only been 5 days...

Anyway! Only time will tell i guess so i will keep you updated and thanks again for your advice/ support! It really helps to know that Charlotte is not the only baby with this problem and having this brace!

Thanks Again!

Emma.

[Chetna]

My daughter was detected with HDD when she was 5 months old. We had her in the plaster for 3 months and just last week she was put in Dennis Browne braces. She was pretty unsettled for a couple of days but is alright now.
Well now that she is 8 months old, I need to know as what best can I do for her development. Could someone please advise on what all can I do. Do kids start crawling and walking in these braces?? Being a mum, just a bit concerned with her development....

PS: Anyone having questions re Plaster also known as harness, please feel free to post your questions. Will be more than happy to help ....
Thanks..

[cannedemma]

My daughter was detected with HDD when she was 5 months old. We had her in the plaster for 3 months and just last week she was put in Dennis Browne braces. She was pretty unsettled for a couple of days but is alright now.
Well now that she is 8 months old, I need to know as what best can I do for her development. Could someone please advise on what all can I do. Do kids start crawling and walking in these braces?? Being a mum, just a bit concerned with her development....

PS: Anyone having questions re Plaster also known as harness, please feel free to post your questions. Will be more than happy to help ....
Thanks..

Hi!

My daughter is 7 months and has been in the dennis brown for 6 weeks... she cannot crawl yet (might not have been anyway) but i give her plenty of time on her tummy on the floor and she now does full crcles and can move backwards... just not forwards yet! And also she can sit up unsupported with the brace because it actually aids balance... i have found that since she has been sitting up she has been much happier because she can see around and be a bit more independant...

I have spoken to my orthotics lady and she said that lots of babies learn to move in the brace, commando crawling (with arms) bum shuffles from sitting position and she said that sometimes babies will stand in the brace against furniture and try to walk. She actually told me that they can get too strong for the dennis brown when tey start trying to walk and when that happens there is another brace they can use which allows them slightly more mobility and they can walk... (albeit the walking is like a cowboy because of the brace)!

My daughter has not let the brace stop her from exploring and whilst it may mean she is slower to do some things she is doing things that some babies her age are not ie. sitting...

also i think less mobility will mean that their cognitive development may develop faster and they may be able to do mroe with their hands etc...

Anyway... that is my experience thus far...

on a more sombre note at my appointment yesterday the orthotics lady also told me that it is unlikely that 3 months will fix my daughter with the brace and that it is usually more like 9 or 12... kinda depressing really...i had to buy her a new high chair and pram because of issues with getting her into it... and now it looks as if its going to be going on until at least her first birthday... it is a slow process! I am told that they do catch up fast once they are out but hoestly i dont feel like she is missing anything yet she plays on the floor and is moving really well, she is happy and that is the main thing!

Good luck!

[Chetna]

Hi Emma,

Yeah, even my daughter moves a bit backwards when on tummy...but wonder why don't they move forward!!
hmm it is kinda sad to know that our little ones will be in braces on their 1st b'day but the way I convince myself is that after all this treatment they will be up and running and then no looking back.....
So how do you keep her busy....I thought of going to playgroup but 'cause she can't move around much...I want another good idea to keep her happy...any advise on this one...
Well maybe you are right....doesn't feel as if our kids are missing on anything but maybe I feel guilty when I see other kids moving around....

Regards

[sweetpea678]

just thought i would let you know. my dd2 was in a denis brown from 6 months to 11months (it fixed it that time) and durring this time she learnt to sit her self up in it, roll in it, wiggle forward and backwards in it. i took her to play group and she love that something different. I did have to get a different car seat to fit her in and a stroller to as she could not fit in the ones i had. I ended up with a maxi rider which at 5 she is still sitting in.

[cannedemma]

Hi Emma,

Yeah, even my daughter moves a bit backwards when on tummy...but wonder why don't they move forward!!
hmm it is kinda sad to know that our little ones will be in braces on their 1st b'day but the way I convince myself is that after all this treatment they will be up and running and then no looking back.....
So how do you keep her busy....I thought of going to playgroup but 'cause she can't move around much...I want another good idea to keep her happy...any advise on this one...
Well maybe you are right....doesn't feel as if our kids are missing on anything but maybe I feel guilty when I see other kids moving around....

Regards

i know what you mean, i still feel like that a bit too...

sometimes its a bit hard to keep her occupied, i try to vary what she does. she goes onthe floor a fair bit with plenty of toys so that will keep her occupied for a while on her tummy, then when she has enough of that i sit her up on the floor surrounded with cushions and toys and she sits for a while longer...

i also sit her in her high chair with kitchen objects like tubs, spoons lids etc so she is happy to sit banging them for a while too...

i also try to go out for at least a half hour walk with her every day in the pram...

i think backwards movement is easier than forward to start with, but i think maybe my daughter might learn to commando crawl or soemthing...

i m disappointed at the thought she might still be in it at her first birthday as well because by then most other babies her age will be walking etc... but i think the same that she will be fixed and wont have to have surgery or anything so that makes it easier to bear!

[Chetna]

just thought i would let you know. my dd2 was in a denis brown from 6 months to 11months (it fixed it that time) and durring this time she learnt to sit her self up in it, roll in it, wiggle forward and backwards in it. i took her to play group and she love that something different. I did have to get a different car seat to fit her in and a stroller to as she could not fit in the ones i had. I ended up with a maxi rider which at 5 she is still sitting in.

Hi there,

Emma and myself are sailing in the same boat as of now and I am very happy to hear your comment . But I wonder how do they roll / turn when their Denis Brown brace is on...it is tough to turn with legs apart....isn't it !!
Do u have any tips on how to encourage kids to sit / roll / stand by themselves...

Cheers..

[Chetna]

Hi Emma,

Thanks for those tips on keeping our little ones busy....I shall now try all my kitchen (safe) stuff....

[cannedemma]

Hi all,

Just wondering how everyone is going now with their babies in spica/braces/surgery...

Charlotte is doing well, still got over a month until our next check up to see how she is going, i think she is tracking well, she can sit up but cannot pull herself up from lying down yet, she can move around alot on her tummy, she is actually getting up onto all fours trying to crawl but is unsuccessful because she can't move her legs independantly of each other... so hopefully she will try something else... perhaps commando crawling... not sure, i would love to see her find her way around a bit!

Anyway, havent heard from anyone in a while and was just wondering how we are all going?

[MonicaP]

Hi Everyone,
Emma- It is good to hear that Charlotte is doing well in her brace!
Hayley had her spica changed on the 6th and we go back in on the 4th to get her measured up for her brace which she will go into in 4 weeks. I am so looking forward to that as at least we can take that off for 1/2 an hour a day and give her a bath and she can go back to swimming lessons which she loved.
She isn't moving at all because the cast is too heavy so we are hoping that once the brace goes on she will get a bit more mobile.
She doesn't have alot of tummy time anymore because we have had trouble with her feet swelling (with the new spica they left her feet out because of the swelling) and when she is on her tummy they start to go a purple colour, but she is very happy and we try to put her in as many different positions as possible but mostly we have to keep her feet slightly raised.
She has adapted very well and she is a very happy baby which is good.
I look forward to hearing more updates!
Monica

[cannedemma]

Hi Everyone,
Emma- It is good to hear that Charlotte is doing well in her brace!
Hayley had her spica changed on the 6th and we go back in on the 4th to get her measured up for her brace which she will go into in 4 weeks. I am so looking forward to that as at least we can take that off for 1/2 an hour a day and give her a bath and she can go back to swimming lessons which she loved.
She isn't moving at all because the cast is too heavy so we are hoping that once the brace goes on she will get a bit more mobile.
She doesn't have alot of tummy time anymore because we have had trouble with her feet swelling (with the new spica they left her feet out because of the swelling) and when she is on her tummy they start to go a purple colour, but she is very happy and we try to put her in as many different positions as possible but mostly we have to keep her feet slightly raised.
She has adapted very well and she is a very happy baby which is good.
I look forward to hearing more updates!
Monica

Monica that is such great news that you only have four weeks left before geting Hayley into a brace! At first for me it was a bit hard but Charlotte is fine with the brace and i think that hayley will be fine too! She will be alot happier to be able to move more and will start getting more strength... they say babies in spica and brace end up stronger in the back and neck because they cant use there legs as much!

we go back in march for our first xray since she went into the brace so i am looking forward to finding out how it is working, fingers crossed it will be helping alot and hopefully they can give me an idea of a timeframe then... i guess my worst fear is that they will say it hasnt worked at all and she needs surgery...

how old is hayley now? i wonder how old they will be when they are brace/spica free????? i really wanted charlotte to be out when she was 1 but i dontthink that will happen...

[MonicaP]

Hi Emma,
Hayley is 6 1/2 months now so she has been in her cast for 2 months. How old is Charlotte?
I'm pretty sure Hayley will be fine in her brace but we are wondering if once it comes off for 1/2 an hour each day she might get upset when we try to put it back on again.
Do you find this with Charlotte or is she ok with putting it back on?
When the surgoen changed Hayley's cast he said the hip felt stable in the socket which he was pleased with. We have been told she will be in the brace for 2 months if all goes well so hopefully she will be out of it completely by the time she is about 9 months.
I can understand why they say they have a strong neck and head. Hayley has amazing head control and lots of people comment on it. When on her back she lifts her head and as much of her back as she can off the ground as if trying to sit up and she can hold herself up like that for ages!
All my best wishes for you and I hope that Charlotte is out of her brace for her 1st birthday. Keep me posted with how you are both going!!
Monica

[caraash]

Hi everyone,
I'm new to this website and very happy and relieved to find a forum with other mums and bubs going through the same thing.

I have a 6 1/2month old who has HD and has been in a brace for 2 1/2 months. I was told at the onset that she had a severe form of HD and that she would be in the brace for 6 months. Of course I was upset to hear this but thought as long as she doesnt have anything life threatening we would get through it. We have not been able to take the brace of at all not even for a bath which has been challenging through summer. But my little angel has taken to the brace really well and has been her same smiling self which has made it much easier for all of us

Yesterday we had the routine monthly ultrasound and appointment with her Orthopaedic Surgeon (OS) and was told that her hips are not improving and will need to have a procedure done in hospital to see if the hip is sitting deep enough in the socket and will need to be in a plaster cast for 6 weeks. I just burst into tears in the OSs office.

I am so sad about this and wanted to know if anyone has gone through a similar thing? We are waiting to get another opinion and am anxious about her being under anasthetic.

I hope someone can shed some light and support.
Caraash