Hip Dysplaysia Support Group

[LauraK]

Hi everyone.

Just to let you all know that we have our appointment to go back to the hopsital on Wednesday for Harrison to have an x ray - we should find out from here whether he needs to continue to wear the brace at night time. We really hope that it's good news but we are trying not to get our hopes up.

I remember our first visit to this group, we read so many stories of people who had gone through everything we were about to experience & were encouraged by the many highs (and lows) which eventually ended in success. I hope that we are heading the same way and have the finishing line in sight. I got through this 25 years ago, and thank God that modern day awareness and treatment for the condition has meant that Harrison has not had to spend the 18 months in plasters, splints and braces that I did.

We will let you all know how we get on on Wednesday; for now, our hearts go out to you all and we wish you all the very best of luck.

Laura xx

[Haileys Mum]

Hi Everyone,

Hailey went back into hospital yesterday and her plaster off after 6 weeks. Dr was happy with her, she now in Rhino brace for ?how long.

Hope everyone is going well.

[nicoli]

Hi all

I am going back to work next next week after almost 9 months off with Scarlett. In case I don't have much time to write on here - our next appointment is 6 May. I am crossing my fingers that Scarlett can have her brace off for good, but will not know until after the xrays. I'll let you know how it all goes.

Hope everyone else is going well.

Nicole

[LauraK]

Hi everyone.
It wasn't great news last week at the hospital. The x ray showed that Harrisons hip hadn't healed as much as the consultant would have liked - he wants the brace to stay on during the night and we need to go back for another x ray in 3 months time. We are worried that it's not improving at all - the consultant didn't say this but at the same time he couldn't see whether there had been much improvement as last time they did a scan - therefore this cannot be compared to an x ray. The consultant seemed quite positive although did mention that if surgery was needed this is normally between 12 and 18 months - we really hope that this isn't the case and to be honest we are trying not to think about this at the minute. Anyway, the brace doesn't bother Harry - and he is sleeping through the night now which is fantastic! I'll keep you all updated.

Nicole - good luck with Scarletts next appointment and hope work goes ok!

Haileys mum - hope Hailey is doing well out of her plaster.

[Pipsqueak]

Hi all,
I just thought I'd let you know that the cast is going well for Lucy and she is more or less still our happy smiling girl! We had an appointment with the physio and specialist a few days ago, and they have scheduled her cast change for 9th May. It seems that the time has gone quite quickly already. Her skin is good and no irritations or rubbing from the plaster, and we parents passed the 'clean plaster' test, phew! We saw the brace she'll go into after the plaster comes off in another few months and it's not as scary as anticipated really. All in all, it seems that Lucy's treatment is going 'according to plan' and the hip is behaving itself. I am hopeful that it will continue that way.
Once again everyone, thanks for your encouragement and wealth of information. Our family has really appreciated it, and someday we hope to be able to share our story with others going through this journey.
Warm wishes to all,
Pip.

[Pipsqueak]

Hi Jo,
How is Hailey going with her brace? I hope that it has been an easy transition for her, and for you guys too! Does your brace go under clothing? I'm not realy up to speed with names of braces yet.
Best wishes,
Pip.

[nicoli]

Hi all

Laura - I am sorry to hear that Harrison's hip isn't going as well as hoped. I have the same worry with Scarlett going back soon. She has been out of her brace during the day and will have her first xray (as opposed to ultrasounds in the past) the week after next. My worst ffear is surgery, but I'll try not to think about it until I need to.

Pip - it is great to hear that Lucy is doing so well. The time really does fly doesn't it?

As usual I am getting anxious as Scarlett's next appointment draws near. I wanted to ask if anyone could shed some light on my concerns. Scarlett is ultra flexible in her hip joints. One of the doctors said that this may have contributed to her hip problem, and now it worries me. When she is in her pram people make comments about how far apart her legs are because they are pretty much horizontal. She can sit up very well by herself, but still isn't crawling (she's 9 months) and when she wants to get onto her tummy she spreads her legs right out to the sides, does the splits and then leans forward. I think this is a bit unusual. Are any of your babies very flexible like this?

Also Scarlett loves standing up with my help, but she keeps her legs very straight. She hardly bends them and if I didn't catch her she would fall straight back instead of bending her knees to land on her bum.

Did other people have physio after coming out of a brace or harness to help them develop certain actions they need for crawling/walking? Our doctor told us to treat her like a normal baby - but I don't think she is normal so it makes it difficult.

Sorry for being so paranoid - you all know what it's like.

Nicole

[Pipsqueak]

Hi Nicole,
I'm coming to understand just how much your head spins with questions and concerns when faced with the journey we're all on. Nicole, you're not alone in feeling like this, I'm right there with you in feeling 'paranoid' about every little movement or mannerism that Lucy has. I think, is that normal or a sign of something else? Did my other kids do that, what age did they do that, how did they move, is Lucy different? The list seems unending!
Perhaps it's worth asking the physio about your concerns with Sarlett's flexibility. See if they can suggest why it's happening, if it's something that even needs attention or if it will just resolve itself with normal growth and development. Ask them for any suggestions they have for helping Scarlett to feel more comfortable with her legs and crawling etc. You may find after talking it through with them, that it helps to have the info and answers that you seem to be wanting.
I hope that things go smoothly for Scarlett,
Pip.

[Pipsqueak]

Thinking of you tomorrow Nicole and hoping that all goes well.
Pip.

[nicoli]

Hi all

We had our x-ray and went to the ortho surgeon today. While Scarlett's right hip is still OK, he said that it is only improving slowly, so it's another 3 months of night time bracing before seeing him again. I asked what happens if she is still not progressing then and he said we just keep using the brace up until she is 18 months (she is 9 months today) and then the absolute last resort is surgery only if nothing else works. He sounded pretty optimistic that the brace will still do it's job in time. I'll keep my fingers crossed.

Of course I'm a bit disappointed, but the main thing is that Scarlett is still happy and healthy. She has just started wanting to stand up and has been pulling herself up. The doc said that if she wants to stand alot we'll have to try to get her to do it in her brace as it is not good for her to put weight on her legs if they are close together. I know she won't like that much!

Anyway I hope everyone else and their bubs are doing well

Nicole

[Haileys Mum]

Hi All,

Sorry it has been so long since I've been here!, hope you are all going well and bub's are progressing well. Hailey is now in the Rhino cruiser and going well. She is crawling around really well and seems to cope like a "normal" crawling child. We go back to the surgeon in 8 days but not really sure what to expect at all/

2 Questions....

1, Has anyone found a high chair/booster seat/anything! that bubs can fit in in a brace?

2, After surgery did anyone's bub take a long time to move the leg, from groin to knee?

Hopefully I hear from you!

Regards,

[Pipsqueak]

Hi Jo, I haven't got any experience with a brace yet, but I have found a great alternative to use for a high chair. Haven't tried it myself, but saw it on the net, called a Beetle Chair or Go Anywhere Chair (??), and it's made from soft material that slips over the back of a chair and there is a little pouch which holds bub in place. I think that the pouch part unhooks enough to get round a brace or plaster, but just check it out on the net. I think you can buy the Go Anywhere one from Mothers Direct, an online store. Have a look, they may be suitable if your dining chairs are adaptable enough, or perhaps it will also fit over a smaller toddlers chair??
Lucy will have another appointment with the physio next week to talk braces and the time frame to transition into one from her cast. We're about half way through this cast, so almost there assuming all goes well. I'll let you know how it goes.
I hope that all your cherubs are going well
Cheers,
Pip.

[Haileys Mum]

Hi Pip,

Thanks for that, I bought a Dinky Diner off ebay, excellant. Perfect actually and not expensive. The same as what you described. It arrived tuesday and we went to see Haileys surgeon on wed. He is concerned about her leg not moving so he wants her out of the brace and moving as much as possible, and in the pool. She was only in the brace for 6 weeks. He said there is still a risk of hips dislocating again but he is more concerned about the leg not moving. Its one thing after another. So she fits back in a high chair!

Hailey's brace was a rhino cruiser. It was pretty easy actually, went over clothes and was very light.


Hi Nicole,

Hailey has only been out of the brace for 4 days but she is crawling around, well more wiggling, she is completly flatfrom knee to knee. her front parts are on the floor... She tries to lift her tummy and crawl, but doesn't have the strenght in her leg to do it. we weren't told to do physio just get her in the pool asap. Haily does the slipts alot too. She is not able to stand even with us supporting her. But she has been in braces and plaster for 4 months and had surgery. I don't that is fair to expect our babies to be "normal" after what they've gone through. I look and other babies Hailey's age and she is not "normal". My dr says to treat her "normally" too...

Hope everyone is going well

Regards,

[Pipsqueak]

I'm so glad that you found something suitable, hopefully you will find it useful even if not right away! It's so frustrating when it feels like there are everchanging hoops put in front of you...you jump through one, only to have another put there as well! Will it ever end??!!
We also had appointments last week, with the physio. Lucy's cast is going great, and she'll have it off on the 19th June, and go into a brace from there. The brace is light and goes over clothes, sounds like what you've decribed that Hailey had. That's exciting and daunting at the same time. I guess because I'm concerned about Lucy needing to be poked and prodded yet again, and yet again adjust to something new...which can be distressing for all of us! And she is moving around heaps, so of course I'm not wanting her to potentially put any pressure on her hip and cause any set backs...I find it hard sometimes not to worry about everything, when logically I know all I can do is take one day at a time. We'll get there I know!
Hope Hailey's stiffness and movement improves and that all the other precious ones are also doing well.
Warm regard,
Pip.

[bridee]

Hi All,

I hope everyone's little ones are doing ok. DD has a check up in a months time which I'm getting anxious about. History: she was in a pavlik harness from 7 weeks to 5 months, when she came out of it her left hip was deemed normal and her right was mild displacia but had 70% coverage so Dr said she was ok to come out of harness. Anyway shortly after coming out of the harness I heard her right hip clicking so called Dr who said it would just be tendons moving. The clicking did eventually stop after about a month.

We didn't need to see dr until she is 1 which is next month. I'm just so scared that the xray is going to say the right hip isn't ok, I have just noticed this week her skin folders on her legs are no longer the same. I'm sure they were at one stage because I was looking when she first come out of the harness. I will feel so bad if she needs further treatment because I could have potential got it looked at earlier when her hip was clicking (could have insisted Dr review her again). DH is confident everything is ok because she is crawling, standing, taking steps while holding onto the couch but I just can't get it out of mind that all is not ok.

Anyway thanks for reading my little rant, in a months time I guess we will find out.

[minimatron]

Good luck Dee, hope it all goes well with your appointment.

We dont have Olivias until next May, which is ages away. For some reason the specialist was happy to wait 18 months. Shes been fine out of the harness, we had a little concern with her foot turning in, but its a positional thing and we just have to do physio on it. Its so nice to be harness free. I am having bubs number 2 in November and a bit nervous that I will have another baby with hip dysplasia. Fingers crossed though.

Hope you are all well

[nicoli]

Hi all


Dee - I am almost in the exact same position as you. We are due to go back to the doctor in a month and I am getting nervous about what they will say. We also have a similar history - Scarlett was in a pavlik harness from 3 - 5 months, then a dennis brown brace for a months and a half and now she still wears it at night time. She started crawling and standing up recently and every time I look at her I worry that it isn't good for her hips and that the next x-ray will show no improvement. I try not to worry but I keep imagining the worst. Good luck with your appointment.

Melissa - good luck in November. At least this time you can get checks early and you will be prepared for what's to com eif you do have another baby with hip dysplasia.

Nicole

[Alexandra's Mum]

Hello All, I have been reading your stories on your little ones DDH in the past few months and was sad to hear about everyone' difficulties, it has been heartbreaking.
My little girl was diagnosed with a clicky hip at a few days old and we had our fist ultrasound at 6 weeks old with another 2 follow up ultrasounds. After the second ultra sound the pediatrician said she was very happy with the progress but we will do another ultrasound in 6 weeks to be 100% sure.
After this ultrasound we were told she would have to go into a brace, which she did quite quickly. At 5 months old she was in the DB bar. She wore this for almost 7 weeks. On Tuesday we went back to RCH for first check up, were told to continue on and we would receive a phone call to advise if we can have the brace off for bath time which up until know we could only sponge bath. We received a call the next afternoon and were advised that the brace was not working for her and she will need surgery and to take the brace off until then. We will be seeing a surgeon in the next few weeks to further discuss and do another x-ray etc.. I am not sure were we go from here, even though they have explained it to us (on the phone) i feel like i am in the dark and in has been sprung on us quite suddenly. I am in shock and very upset.
Am hoping someone can shed some light. Going by some of the stories i have read it seems that this is going to be a very long process for our baby, and I feel like she is being deprived of a normal childhood.
I know i should not feel this way as this is not the end of the world and she will be fine in the long run. We seem to have been dealing with this issue from the day she was born almost and it has only been getting worse for her until now. I am not looking forward to her being uncomfortable and in pain after the surgery.
I am so sorry to babble on like this.