Hip Dysplaysia Support Group

[cjoe]

:pray:
Hi Bertie,

Only a couple of days to go now, i hope all is well with you and that the next few months are not too hard on you, everyone keeps telling me that the children cope better than we do. We should be back from Westmead next weekend 27th June. I have my DD1 3rd birthday party the following week so at least I will be kept busy. We had to postpone it for DD2 surgery.

Take care
Caroline

[bertie]

Hi Caroline,

I have been thinking of you too - not long to go now! I think the worst is the anticipation - at least once our poor babies are in their casts, we can begin to get on with life and count down the days until the casts come off...

We are actually celebrating Olivia's birthday today - her birthday is not until the 30th, but I wanted her to have a lovely celebration without the cast. Just a very small family gathering, but she will have fun opening her presents and getting her first taste at cake! I did have some trouble choosing presents though - tried to get her some stuff that would entertain her over the next few months...

Best of luck to you and your DD on 23rd - will you go in with her to the anaesthetic room? I'm struggling with this at the moment - have heard it's very upsetting, and maybe should send daddy in with her, but I want to be with her when she needs me!

Bertie x

[cjoe]

Hi Bertie,

I think I will go in with Ella, I know it will be hard but I think it is also very quick for them. My husband will be with our older daughter as we have to take her with us, i think both parents are allowed in recovery. Just remember that they are in good hands and this is the begining of their future.

Good luck, will check in on our return from Westmead.

Caroline

[minimatron]

Hi Bertie and cjoe. I just wanted to let you know that I am thinking of you and whishing you all the best with the ops. Let us know how it all goes.

And Happy birthday to little Olivia (what a beautiful name!). Hope she has a great party.

Melissa x o

[bertie]

Hey Caroline - how did everything go? I have just written a long post in the other Hip Dysplasia thread, which I won't repeat (it was a thesis!), but basically we are doing ok, other than poor Olivia has had a nasty throat infection over the last few days (probably coming on before the cast, and got worse afterwards), so this has been worse for us and Olivia than the cast itself.
Olivia is sleeping really well, but is not so good when she is awake - just wants to be held all the time, which is knackering as she is so heavy now. Am hoping she will get better about being sat on the beanbag etc over the next few days...

Let us know how you got on - I hope Ella is doing ok.

Bertie x

[Lizy79]

Hi all,

I have posted in the other thread but thought I would say hi in this one too.

Caroline - my son was diagnosed with HD at 18 months. We noticed at 16mths (Nov08) when he started walking that he walked with a limp, so off to the GP then Paed (Dec08)then PMH in Perth (Mar09) - we had to wait 3 mths because of the xmas break aparently. (we live 5hrs from Perth)

Anyhoo by the time it was March, Hudson was 22mths old!!! We were told it was surgery and a cast then a brace. Hudson had surgery but all they only needed to 'nick' the tendons to move the hip into place. Hudson is now at week 13 with a cast. We just had a new one put on yesterday, this one is only on for 2wks while they make the brace. We've been told that if the hip socket doesn't deepen after the brace then they will perform the procedure that your little one has to do now.

Hudson has been really good and adjusted fine to the cast. He does wear through it at the knees everytime though - as he drags himself around. Hudson attends child care as we both work (my DP did take the first 7wks off though) the day care a cool about it. I have just requested that he not go in the sandpit but I'm fine for him to go outside.

The challenges we have faced are the highchair issue. The first cast didn't fit, the second one did and now this third one doesn't fit again. I just cross my fingers that the brace will!!!

Feel free to ask anything you need... just relax and go with it really, kids are resillient (sp?) and will surprise you!

Lizy

[purple fairy]

Hey there HaileysMum - great name

Sorry to hear little Hailey's hips are no better. My DD had the hip spica too. Just wanted to let you know, our experience, though devastating to initially deal with, was a good one. Quick run-down of our story. Diagnosed at 6mths, into spica cast at 7mths, out of spica at 10mths and straight into brace until 18mths, worn all day everyday including sleep (max. 1hr free). She went in for surgery but they were able to manipulate her hip into the correct position whilst under so luckily no open surgery was required, but was still put into spica. She's about to have her final check-up in a couple of months and all is looking pretty good (she's just about to turn 3).

Hailey had the spica put on at the beginning of summer so I immediately thought we'd have a particularly tough time on our hands but she was amazing with it. Although not exactly something you want your child to have to go through, babies are amazing at what they can cope with. We did have a couple of problems with sleeping but had other factors contributing to it. Hope you have lots of people around to love and support you through this time. You will get through it and be all the more stronger for it as will your daughter.

Don't hesitate to ask any questions. I know others on here have gone through the same thing.

lots of for you and your family during this difficult stage.

my one year has been in her spica now for 3 and half weeks and wont sleep at night. do you have any ideas for help

[wysiwyg]

Hi hope this is the right spot for this. Had an ultrasound on my six week old DD yesterday and it confirmed she has got an issue with both her hips although left worse than right (I read at the beginning of this thread is more common with left - I wonder why?) - and will need to wear a harness (Pavlik harness?). I now need to wait for the doctor to get the results who will write me a referral - just wondering what the process is from here. Will I have to wait long to see someone, who do they refer you to?, how long will it be before she is the harness am hoping is quick as seems the quicker the better?, do you need special clothes to wear with the harness? can you carry in a sling in the harness? can you use cloth nappies? how much is it likely to cost?

Is great to read about other babies who are doing well.

[minimatron]

Hi I am sorry to hear that your dd has hip problems. Its good that she is picked up so early as it is much easier and quicker to treat. My DD1 was in a Pavlik Harness from 5 weeks old til 8 months old. I know that sounds a long time, but when I look back on it the first 12 or so weeks was full time, then it came off for 20 minutes a day for 6 weeks and the rest was at night time only. She was picked up at birth, she only had about 27% coverage, an audable clunk and her leg creases were not even.

We went through the hospital she was born at (monash clayton) as they had an orthopaedic outpatient clinic there. Being in camberwell you may be referred to your nearest big hospital or even the childrens. I know at my hospital the first harness was free but she needed 2 more sizes and they were $100 each. The physio sessions also were free. I guess it depends on where its getting done. the out patients was free to where we saw the specialist...it was bulk billed.

For clothes, I stuck to bonds wondersuits as they were stretchy and being winter its perfect fo wondersuits. Anything stretchy is good. I couldnt put jeans on DD1 as it pulled the harness in. You can use cloth, we used it for a while but dh found it too hard, so we switched to sposies. Just got to be carefull not to get it wet coz if you cant take it off its hard to get dry when they are waring it. We used a hair dryer to dry it with a towel to pretect their skin.

As for the sling, I found it a bit hard, but you can give it a go.... I didnt use any carriers coz I was too scared to stuff her hips up. Make sure she gets plenty of tummy time or is propped on a pillow or bean bag as my dd got a really flat head from laying on her back all the time.

I hope that answers some of your questions. Just to let you know, as devistating as it is now, it will be fixed and my dd practically crawled soon after she got it off, and she was walking by the time she was 12 months. Shes now a healthy and very active 2 year old.

best wishes

Melissa

Ps...if you look at my photos on the link in my signature, you can see a few pics of Olivia in her harness

[wysiwyg]

Melissa - thanks so much for your responses, and pointing out the photos it helps to see a photo of a baby in it.

I don't know the degree yet, the click seems to have been audible occasionally when the doctor has checked on two occasions and the leg creases look even so hopefully coverage is not too bad, just know the left is worse than the right. It is a bit frustrating at the moment because have to wait for my doctor to review the results and give me a referral when I know we do have to do something and the ultrasound guy said would be good if can see someone next week (the sooner the better and all that). I would feel so much happier if had an appointment for next week.

[bridee]

It was through the rountine 6wk ultrasound that my DD's hips were detected. She saw the orth surg the following week and on the same day as seeing him she was in the Pavlik Harness. Went we through the Childrens but saw Oth Surg as a private patient. His offices were near the Children's so the Children's fitted the harness and adjustments were done there. Because we went Private we paid for the harness (around $130 I think) but that also included all appointments for adjustments. DD only needed 1 harness but if she needed another one we would have paid the same again.

As for clothes we went up a size and just kept to items that we not restricted ie. didn't put press on the legs - romper suits were good.

i never used a carrier/sling just because I was too concerned it would put additional pressure on her hips. But that is something you could ask Orth Surg or person that fits the harness.

My DD was in harness full time for 12wks then weaned from harness from another month.

On a seperate all today we had DD2 hips checked today (she was also breech but would have got them ultrasounded anyway given DD1 history). Anyway her right hip is definitely ok, her left is borderline so they said to come back in 6wks for it to be checked again. They said there was about 50% coverage. They said if there hadn't been family history they would have said it was fine but coz DD1 they said they need to take the caution approach so while we don't have the all clear yet we are optimistic DD2 won't need a harness.

[minimatron]

Hey Bridee we had dd2s hips checked too coz of the history and she had borderline coverage. Thankfully by 3 months she got the all clear and dint need a harness. All the best with it.

[cjoe]

Hi All,

Sorry I havent been back on line for a while, Ella is finding the cast very difficult to adjust to. We have had some really bad days lately.

The operation went well, she had a Salter Osteotemy instead which means that we will have to go back in about 4 months to have the wires removed, but they have said that in the end this will give a better result. The operation lasted longer than expected, which was a worry.

Ella wants to be held all the time too, we are managing more down time each day and fortunately she fits into her high chair, so my hubby had made a play table that fits around her.

We have had many sleepless nights and I spend most nights on a camp bed next to her cot, we had to see our doctor for some night time sedation as I was not coping at all on 1 - 3 hrs sleep a night, Ella was waking continuously, we have now had a couple of good nights - only waking a couple of times so hopefully we will all feel better soon.

Ella is very frustrated during the day but with sleep we can cope with that, her 3 year old sister is managing to play with her - lots of threading games and sticking and pasting.

I have found that Ella will sit on the bean bag for short periods of time, we put the bean bag down with the pointy end forwards, (on its side) most of the beans to the large end and she manages to straddle the narrow end with her head supported by the large end - hope that makes sence.

I admire everyone who has to go through weeks and months of this, we are just trying to count down the days until the cast comes off.

Hope you are all managing much better than we are, I'm sure that with better night sleeps we will manage.

Take care,
Caroline

[minimatron]

Caroline...big hugs. You sound like your doing it tough. I hope things get better soon for all of you. It is tough but there is an end to it. Thats lovely that your husband made her a play table. How resourceful. She just sounds uncomfy. Anyway I just wanted to give you hugs....

[nicoli]

Hi all

wysiwyg - I am sorry to hear about your daughter. It is the hardeest time waiting to find out what treatment she will need. Once you get started you won't have all that time to contemplate everything. Hopefully you get in to see the doc soon. My daughter Scarelett was diagnosed at 3 months after the community nurse notice uneven skin folds on her legs. She had no other signs prior to that and had been examined by several paeds and doctors. She was in a pavlik harness for 3 months full time and then a dennis brown brace for about a month full time before wearing it only at night until 2 months ago (she's almost 2). She was in the pavlik harness during summer so we had as little clothes on as possible. We used to slip onesies under the harness just to stop it rubbing on her skin. She took a little while to adjust but eventually got back to her happy little self.

Caroline - sorry to hear Ella is having such a hard time. It must be hard for you to watch her and especially with the lack of sleep. I hope she cheers up a bit for you soon.

We had Scarlett's 2 year check up on Tuesday and Dr Little said she had shown good improvement since her last visit (at 18 months) and he now only needs to see her every year. He didn't give us a 100% guarantee that she wouldn't need an op, but said we would wait until she's 5 to decide. For some reason her hip has just been very slow to recover on it's own.

Bub is due in 2 weeks so I am sure I will have my hands full for a while after that. I've been told to have him screened at 6 weeks so I'll be sure to let you all know how that goes.

Best of luck to everyone

Nicole

[minimatron]

Oh Nic...good to hear from you. All the best with your birth and looking forward tohearing your little man has arrived safely

[wysiwyg]

Hi,

Thanks for all the info.
We had our appointment and got a Dennis Browne brace fitted on Monday morning - so appointment came through really quick. Her right hip was borderline, but her left hip the joint was very shallow and the ball actually could slide in and out of the socket without a click or clunk - so we were quite lucky that the right hip clicked or it might not have been caught so early. CJ was quite miserable the first day screaming everytime she tried to kick her legs as normal and couldn't, second day was much better (first two nights were quite sleepless) and now seems back to her normal self. The nappy changes are quite a challenge but seem to have mastered it now, I need to put her on her front to feed the nappy through the back so she is getting plenty of tummy time now. They made the bar quite rounded so could continue using the cloth pocket nappies, some styles work better than others, the bumgenius are good, green kids as are more bulky are trickier to get on but otherwise work fine. When got the brace fitted, the lady said CJ was one of the most difficult babies she had, had to fit as kept fighting it, but yesterday when went for checkup and they took it off went back on really easy so she is obviously used to it, and that made me feel better as hopefully in six weeks we will be able to take it off to give her a bath.

At the moment we have a safe and sound capsule on hire from the council, but her knees touch the sides already (she is a big baby) so need to investigate getting a different car seat - anyone any advice on what models are good or bad for babies in harness or brace?

They said the sling was fine as long as both comfy, and tried on tuesday and the hugabub has the legs in a similar position to the brace anyway. I don't think would work forward facing though, as the bar on the brace would prob be too uncomfy digging into me, but she is too young for forward facing anyway.

Nicole - best of luck with new bub, and hope the scan at six weeks is all clear. My understanding is that I will now have to have any future bubs scanned?

[minimatron]

Thats great that it was actually picked up early bcause it would have been a longer process if it was found later. Sounds like she is managing well and that you are also doing well. Good that shes getting some tummy time too. As Olivia had the pavlik we put her in a safe and sound compaq and she was ok but the pavlik doesnt have a bar. Maybe you could ring the place that you got the harness fitted. Good luck with it all.