Hip Dysplaysia Support Group

[minimatron]

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

[nicoli]

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

[bertie]

Hi everyone,

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

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

[Miss.September]

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

[bertie]

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

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!

Bertie x

[crosswig]

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

[MummyNaomi]

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

Naomi

[veryproudmum]

Hi all,

I'm very new to all of this - motherhood, hip dysplasia and posting on forums.

I'm just looking for your thoughts as I've been left a bit in the dark by my healthcare providers.

My DD's uneven leg creases were noticed at her 6-8 week check up, so we went to our GP who said she needed an ultrasound, which she had at 2 months. Coverage was around 50%, recommendation was for another ultrasound in six weeks. Second ultrasound (last week) at 4 months showed right hip was now 60% and OK, however the left hadn't changed, indicating mild dysplasia. Saw GP the next day who had no idea what this meant - he spoke to a paediatrician who was also unsure, so GP referred her to an orthopaedic surgeon who doesn't want to see her until she is 5 months.

I pretty much freaked out when we got the second ultrasound results, and again after waiting a week after the ultrasound only to find out we wouldn't be seeing the specialist for another 4 weeks. After confirming with orthopaedic surgeon's office that the wait isn't because he is booked out, but because he specifically wants to see her in a month I am feeling a bit calmer, but still very much in the dark.

I am torn between hoping she won't need to wear a brace and fear that she will and her treatment will be longer/more invasive because it was started late.

I know a lot of others are in much worse situations, should I just be enjoying what may be our last few brace free weeks?

[crosswig]

Welcome VPM. It is a very confusing time isn't it when you start on this journey? I found the wait between diagnosis, ultrasound and starting treatment the hardest bit. Especially when you have a bit of a wait between diagnosis and seeing your specialist.

I don't know if I have any good advice about the wait until you see the specialist and if that will mean longer or more invasive treatment. Who are you going to see? Maybe the other members will be able to give you some guidance as to their experiences if you share the specialist (Moderator - if we all play nice is this within the guidelines of this forum?) I guess it is somewhat reassuring that the wait is a considered position on the specialist's part.

Definitely enjoy the time until you (possibly) have the brace fitted. I find that I miss baths most of all.

Crosswig

[Jesska]

Hi everyone.
Well we had our paeds appointment and he is really happy with the way her hips are going. They are in the socket and stable which is fantastic. He also said instead of 12 weeks being in the stint it will be 13-14 weeks?? not sure why, cos he seems to think everything is coming along great.... we have her ultrasound on the 23rd of this month. So kinda nervous about that, hopefully everything is looking good... what should i ask the person that does the ultrasound?? any advice/tips from you girls would be great.
The doc however did say that those 13-14 weeks she wont be in the pavlik harness all that time, she'll be in another brace... but yeah I was kinda disapointed when he said she'll be in it for the full 12 weeks maybe longer. We see our paeds the afternoon of the ultrasound. Does the ultrasound hurt the babies?? Im getting my DH to come with me and not go to work in the morning, dont think i can do it on my own. and esp if i have to bring the boys, they are so full on!! well i hope everyone elses bubs are coming along great. cyas

[bridee]

Jesska - pleased things went well at the paeds. The ultrasound doesn't hurt but they can protest about it - DD2 had 3 ultrasounds throughout her treatment. The 1st one she screammed the whole time and in the end I was breastfeeding her as they scanned to keep her calm but she did have to have a kidney ultrasound prior to the hips so it was a big event for her when she was only 6wks. The 2nd scan she cried a bit but not much and 3rd scan she just didn't care didn't say a thing.

At the scan the major thing you want to know is what the coverage % is, you are hoping for something around 60%. They may not be able to tell you that until they actually go to write the report but they should be able to tell you roughly.

We were always lucky that the radiographer ended up doing DD2 scans rather than the sonographer. We didn't request it it just happended DD2 put on enough of a performance the sonographers weren't confident in getting good pictures and the 3rd scan the sonographer had just no idea on how to scan with DB bar on. The radiographer is always going to be able to tell you more.

[wiggs]

Newbie in need of some advice

Hi everyone, I am new here and although I have been reading lots on the belly belly forums this is my very first post. So apologies if things are not quite right.

Anyway today I took my DD Chloe for her 6 month maternal and child health check up. My nurse found that her skin folds on her thighs and buttocks do not match and that her left knee is lower than her right. She has advised me to take her to my GP who will then order an ultrasound. I'm just freaking out a little as at 2 weeks the other health nurse thought she detected a clikcy hip on that same left side but then when I went back at 4 weeks to see my now regular health nurse she couldn't hear it and advised that it had prob. corrected itself. My GP also never said anything about it at the 6 week check.

Just worried that it has gone too long and a she is 6 months will need more agressive treatment. She is such a cruisy and happy baby I feel so sad at the prospect of her being in a cast. I also have a 2.5 year old boy that has never had any probs. he was crawling at 6 months - she has only rolled once and my DH and I have been laughing that he had to crawl to get places whereas all the action just comes to her. Feel like I should have noticed this earlier.

Anyway just having a sook, guess I am a bit shocked. Can anyone advise me on what generally happens if one hip is out in an older baby. I know you can't give me medical advice but I just have no idea what to expect.

Thanks

[bridee]

Wiggs - I can't really help you with what happens with older babies as both mine were picked up early (6weeks and 12weeks) but just wanted to say good luck and while things seem scary now don't get too far ahead of your self - uneven skin folds doesn't necessarily mean hip problems some babies can just have uneven skin folds. In saying all of that I would be getting it checked quickly so if treatment is needed it is not delayed.

Just wanted to say good luck. Someone on here will certainly be able to help you.

[Hera's Dad]

Hello everyone. I got the news today I've been dreading. My little girl is 9 months old and on the verge of Walking. Now she's going to be put in spica cast and be imobilized for the next 3 months. I'm of course devistated but am not entirely surprized. In fact I'm furious at my doctor because it took until now to find it. I understand things can be missed but in this case I noticed the "POP" in her hip almost 4 and a half months ago and I told her doctor of that but he said she was very "strong" and nothing was wrong! I felt something was wrong but he assured me she was strong in her legs. My problem is that if a parent says they felt a "pop" in their daughters legs he (the doctor) should take that seriously considering what a pop means.
I also understand I'm in the blaming stage right now but if this could've been worked out earlier it wouldn't be screwing up her walking as much.
Even the doctor who is going to do the surgery stated that it's rare for her to see children this old having to have the surgery as it's caught much sooner. Which I responded "I did catch this Much earlier!" but my doctor said it was fine.
So that's my rant, but I hope I can come here to get some tips on how to cope with this situation from those who've gone through this. Thank you in advance.
Leon "Hera's Dad"

[Miss.September]

Hi everyone,

Hera's Dad - what another idiot of a doctor. The quicker they do mandatory ultrasounds at 6 weeks old, the better all our babies will be. You'll get a lot of advice here and ideas of what to do. The best bit I found was to get a beanbag for bub once the spica goes on and to look at loads of photos online of babies in spicas so that you're not so shocked when your baby comes out of surgery. Good luck.

Monday was our 12 week appointment, "After Spica". Originally we were told that the rhino cruiser brace could come off then, but da dum. Not this visit. DD's hips are growing and starting to shape correctly but not enough for her to come out of the brace.

She's really starting to feel this horrid Melbourne heat, even in a fully airconditioned house. I asked the surgeon if swimming was an option, and he said that was fine, and even to leave the brace off for a couple of hours if we do put her in a pool, but I feel so bad for her- after a b/f her head is soaked because she is just so hot, poor darling. We've got another appointment in four weeks so I've got every finger and toe crossed that the brace can come off, even if it is just during the day. She cries if I put shorts on her under the brace, she hates the feeling of the foam inserts on her legs and I know I'm not supposed to do it anyway, but had to try something.

I really feel for you guys out there at the moment with bubs in spicas when we're struggling in the brace, which I'm sure isn't half as bad.

Hope everyone is coping with all of this. I can loudly say that I CAN'T WAIT FOR ALL OF THIS TO BE OVER!!!!

Corelly