Hip Dysplaysia Support Group

Wow sara, thats really great of you to pop that stuff down for people to read. Good luck for the next 7 weeks.

wysiwyg...thats great news. I remember when we could take olivias harness off and she would be frog legged with out it on. After she had it completely off it took about a month for her to keep her legs straight. Its hard to readjust to a baby without a harness. I think for me it was the fact that when Olivia got the harness off, she had to learn how to sleep with the freedom of her cot...she was able to roll and get stuck and move out of her covers. It took months for her to adjust to that...lots of sleepless nights!

Well its been so long since all that has happened, although it only feels like yesterday. Olivia is now a very active 2.5 year old and you wouldnt know she had anything wrong with her hips

Take care

Hi everyone

wysiwyg - good to hear that DD is now improving so much after wearing the dennis brown brace. It is so wonderful to see their little bodies again after having a harness/brace/cast on for so long isn't it? I'm sure that her legs will come in eventually although I must say that even to this day Scarlett is very flexible and often spreads her legs out to the sides when lying on the floor.

Sara - it's great to hear that you were so prepared for what was going to happen. I think the more ready you are the easier it is for you to be there for your daughter. I hope the next 7 weeks go by quickly.

About our little man - we had his ultrasound last week but only saw the paed today. The ultrasound was a nightmare. He pretty much screamed for half an hour while having it done. The woman doing it was a real cow. She was nasty to me from the moment I got in there and decided she hated me when I rejected her suggestion of putting sugar syrup on Xavier's dummy to calm him down. Oh well back to the results - the paed said that he has stage 1 (borderline) DDH but thinks that he will grow out of it. He has ordered another ultrasound in 6 weeks to check his progress so I'll keep my fingers crossed. I didn't ask the sonographer what the ultrasound looked like while she was doing it (because she was so nasty) but I saw the percentages were between 50 - 60% when she was capturing the images. I remember Scarlett's good hip was about that, but her bad hip was 17% so I thought his results were pretty good.

I hope everyone else and their bubs are doing well.

Nicole

Hey Nic, good to hear from you. Rebeccas were borderline as well and she had u/s until 5 months old, then xray. They just grew on there own. I am sure it will be fine. Sounds like the lady was a cow....dont you hate that.

Hi everybody,

I just wanted to say a quick hello to you all and thank you for telling your stories. They have helped me a lot in the lead up to DD2 going into her pavlik harness. Especially important has been seeing the start of people's posts and their progress.

The day after DD2 was born the ped noted that her hips felt a bit loose. Fast forward to DD2's 6 week check-up and the hips hadn't come right. Immediately I feared the worse but with a bit of research - and reading all of the threads - I found out that the treatment was not quite as bad as I feared, our children cope much better than we do and found early that these things are very fixable.

The tips on what questions to ask at the ultrasound appointment - posted a while ago - were very useful. I was able to ask the right questions and had a pretty good idea about what to expect in terms of DD2's treatment. DD2's right hip is right on the line and the left hip is moderately dysfunctional (is that the right term?).

Still, the day DD2 went into the harness was a bit of a blur and I had a little freak out. We have had the brace on for two weeks now and hope that it will only be on for another 10 weeks. We will see how it goes. I don't want to pin my hopes on a specific date as I know it doesn't always work as quickly as hoped and I don't want to be disappointed.

Anyway, that is us. Hope everyone is doing well.

crosswig - Hope all goes well, not having a set date is a good idea, they didn't really give us any indication of how long, just an average case scenario which meant that when we went last Friday and after only 10 weeks in a DB brace and they said we could reduce it down to only for DD's sleeping time we were really surprised and so pleased.

Hey crosswig, glad you found some useful things in here. Its good to not have a time frame set in mind as it does seem to take a while for the hip to grow. In Olivias case, every time we had a specialist review, i always would psych myself up and think, this would be it....then we would always get...see you in 6 weeks. Olivia was in hers (Pavlik) for 6 and a half months. It felt like forever. I remember though the last few months were only night time....good luck with it all.

Melissa

Hi crosswig - welcome to the forum. I think all of us have found this forum wonderful as it makes you feel that you are not alone. My daugher Scarlett was in her pavlik harness for only just over 3 months becasue she only went into it at 3.5 months and after that it was not doing it's job anymore. After that she went into a dennis brown brace for a longer period (although only at night after the first few months). I remember pinning my hopes on getting out of the brace by christmas the first year and being so dissapointed when we were told her treatment would be more long term than originally thought. For some reason, Scarlett's hip took alot longer than normal to correct itself so she was in her brace at night up until 4 months ago (when she was 22 months). We still have annual reviews until she is 5 to see if it completely fixes itself.

Anyway I'm sure you've read on here that all of us have had our moments of breaking down and crying thinking that nothing will ever be the same, but it does pass and as time goes on, you situation will become the norm. I talk to Scarlett about when she wore her brace now and it seems like a distant memory. She coped so well with everything that it makes it so much easier on us.

Good luck with the next 10 or so weeks. I used to go to appointments expecting the worst outcome but hoping for the best. That was you might be pleasantly surprised if there is a good result!

Take care

Nicole

Hi everyone,

I have been out of touch for a while - we had a much needed holiday :dance:

My DD Olivia came out of her Spica about 2.5 weeks ago - it already feels like a distant memory, and she is pretty much doing everything she was before she went in - she has really blossomed since she's been out of the cast - not that she was miserable in it, but she just seems so much more enthusiastic about life.

Anyway, she had an x-ray when she came out of the cast - her hips are stable and in the right place, but the angle is still a little steep and there is no bone growth yet. The specialist said that is not unusual, and both should come with time, and Olivia is in a Rhino Cruiser brace for sleeping, to give her a bit of extra stability until things are totally good. We go back in 2 months for another x-ray and check-up to see how things are going.

I'm loving having Olivia out of her cast, but I feel rediculously worried about the fact that she has no bone growth yet. I keep looking at her legs and wondering if she is doing something slightly different with her dodgy one, if this is a sign her hip is slipping out of place again?

Did anyone else have this problem when their children came out of the cast? I'm so scared that after all of this, she is still going to end up having an operation and going back into the Spica...

Bertie x

Hi Bertie,

I feel like you're reading my mind and saying all the things I'm feeling!

My DD has been out of the spica for six weeks now and into the rhino cruiser full time. It's horrible at each nappy change, I've been looking at the uneven folds of skin, fretting away that its all going horribly wrong. But on Monday, we had an xray and check up with our surgeon and the hip that was under-developed is pretty much perfect, and the one that had the open reduction is still very shallow, but beginning to grow! DD now can have the brace off for an hour in the morning and an hour at night and the folds of skin being uneven didn't concern the surgeon. So we're back again in six weeks for another xray to see how we're travelling.

DD is LOVING the two hours out of the brace and we make it so that the last time it comes off is right before her bath so she doesn't get cranky about it going on. Now, if only those rotten teeth would come through...!!

Hope everyone is travelling okay and all the bubs and mums are hanging in there!

Corelly

Hi Corelly,

Glad to hear I'm not the only paranoid one out there... and really pleased to hear you had such positive news on Monday :clap:

I don't think I'll relax until I hear that there is evidence of some bone growing there...

I was really pleased when the specialist said Olivia only needed to wear the brace for sleeping, because we were going on holiday a few days later and I wanted her to be able to swim etc, but now I'm stressing that maybe she should be wearing it all the time?!? I guess we just have to go with the specialist's advice - they know best...I hope!

Our next x-ray is also in about 6 weeks, so fingers crossed it's good news for both our DD's!:pray:

Bertie x

Hi everybody,

We moved from a small Pavlik harness to a medium sized one today. The physio let me give DD2 a bath. It felt so good to hug my little girl without the harness and she loved her bath. It was pretty sad to put the new harness on but hopefully we'll have some progress at her next check-up with the ped in 8 weeks. It would be nice to have a couple of harness free hours a day.

I need some advice from the network, just before we got the harness I asked our ped if he'd provide me with a certificate so that I could use sick leave for the time that we have the harness on. He didn't think that work would cover it - but my HR have confirmed they will if I have a certificate - because it isn't that much extra work. So at the moment I'm using my Long Service Leave and annual leave to care for her. Does anyone else have any experiences on this front? I know compared to families in a spica we have it much easier but I'd rather spend my leave doing something like going on a big family holiday when we are harness free. Do I just leave it or ask again?

With best wishes to all,

Crosswig

Hi All,

I have just been reading through all the posts to find out more about hip dysplasia as it appears our DS has 'developmental dysplasia' in his right hip. He is 5.5 months old and I am very concerned as it appears that treatment is much more effective if caught early and as we are nearing the 6 month mark some options may not be avail etc. Our paed advised that unlike congenital dysplasia which is picked up at birth or 6-8 week checks (Bailey was checked at these times and at his 4 month health check and nothing was detected) the developmental dysplasia occurs as the hips etc develop so there was nothing to identify earlier (If I have heard him correctly I think have this right, the whole conversation is now an emotional blur in my head now). Anyway, we have to take DS for an ultrasound on his hip asap (he had skeletal xrays which picked it up as he has some gross motor skill delay and our paed was routinely checking his bone growth) and then pending that outcome, then off to the orthopedic surgeon. I am devastated as I am concerned that this will further hinder his gross motor development issues and also as he is almost 6 months am concerned how agressive treatment might be if needed. I just want to wrap him up in cotton wool and run away :(

Anyway, reading some of your stories has been inspiring, and scary also so I am hoping the next few days/weeks brings us good news :crossfingers:

Naomi

Mummy Naomi,

as a new member myself welcome to the forum. I'm sorry to hear about your little one but glad to know that you have made your way here. Reading back over the posts there are a lot of very useful tips. A while back there was a consolidated list of questions to ask at the ultrasound so you have a better idea of your situation. Another good tip was - if possible - take someone along to the early appointments so that together you have a better chance of remembering important information.

Best of luck for your next appointments and hopefully all will be well. If not, remember there is a wealth of experience and support here for you. The members will have at least experienced some of what you are feeling right now.

Best wishes and fingers crossed for you,

Crosswig

Crosswig - I would definitely ask again for a certificate. If your work is prepared to cover you with sick leave that's all that matters. Just let the paed know that. You shouldn't have to use up your other leave.

Naomi - welcome to the forum. Good luck with everything. You'll just have to wait to see the outcome of the test before worrying too much. The treatment will depends on the severity of the problem. Our daughter was in a pavlik harness at 3.5 months and then a dennis brown brace at 6 months so you just never know. I know what you mean about wanting to run away and hide. I felt like that at first too. I was so worried about how it would impact on my daughters development and temperament. I'm sure deep down you know that the problem needs to be fixed and as you will see on here - even if your bub's development is delayed due to treatment, they will back on track in now time. Let us know how you go with your appointments in the coming weeks.

Nicole

Thanks for your support Ladies!

We have our ultra sound booked for tomorrow morning then back to the paed next wed, then onto the orthopedic surgeon from there - I think the wait will do my head in but there is not much we can do about it. Nicole you are spot on, my biggest worry is how it will impact Baileys development, he already has gross motor skill developmental delays eg he cant lift his head or prop himself up from tummy time position among other things and is almost 6 months so this is just another hurdle to overcome and will set him back even further potentially

Ahhh, this parenthood gig is so worrying

Hi everyone!

I just thought I'd write a progress report because I'm excited, and for everyone out there who are just beginning this journey, please don't despair too much - my DD, while out of the brace, ROLLED OVER!!!!! :dance:

For anyone going through this you can understand what an achivement this is. She wasn't even three months when the first brace went on, then into surgery and a spica and now into a rhino cruiser brace, only coming off for two hours each day. I am so proud of her determination to do this and I know that once this brace is off for good there will be no looking back.

Hang in there everyone, you're not alone, and there IS light at the end of the tunnel.

Corelly :p

Corelly,

You must be so proud! I've very glad to hear of your little ones progress :clap:. It does give me heart to hear about such progress and to be reminded that there is light at the end of the tunnel.

Crosswig

Hi Guys,

I took Bailey for his ultrasound today, and although the sonographer was not telling me anything (he was a bit of a twit), this is what the report says (I waited for the images so I could read it as we dont go back to the Paed until next Wednesday)

Hoping you guys can put it in laymans terms for me

The coverage on both sides is good, the right being measured at 77% and on the left being measured at 76% (I take this to be fantastic as a friend told me anything above 70% is considered in the normal range?) The right ALPHA angle was measured at 77 degrees and at the left 64 degrees. While the coverage is good, the acetubular margins remain quite rounded bilaterally. While this can be associated with immaturity, it is quite prominent given Bailey's current age. (FYI - Bailey is almost 6 months)

Its the last part that I dont understand - what does it mean? Hoping someone can shed some light

Thanks
Naomi
x