Hip Dysplaysia Support Group

[Haileys Mum]

Hi Guys,

Just back from Melbourne. Hailey's hips are no better after 2 weeks in the Pavlik harness and 2 weeks in the DBB so we are going back soon, 2-3 weeks, for surgery and a hip spica. I am totally devastated, numb, angry, sick, and god knows what else. I don't really know what else to say. Just thought I'd let you know.

[bridee]

Jo - so sorry things have not improved. There are people on here that know about hip spica so I'm sure they will be able to give you support.

[ZigZag]

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.

[LauraK]

Jo

So sorry to hear that things havn't inproved, can't even imagine how you must be feeling. I was in a spica cast when I was 13 months old and I can't remember a thing and my family tell me that I adjusted really well - it was them who struggled to see me in the cast. I know it's no help at the minute but my hips are absolutely fine now and this keeps me going when I worry and get down about Harrisons hips.

Keep us updated on how things go and take care of yourself.

Laura x

[Haileys Mum]

It seems to get worse for us at every turn. Monday Morning the Paed Ortho's secretary rings and says Hailey needs surgery asap, as in this saturday, so of course we freak out! But we get over that and start to get prepared, then at 5 pm today the hospital ring up and say they have been onto our insurance co. who won't pay as they classify this as a preexisting illness and we have only has health insurance since june last year.... So regardless of the fact this was only diagnosed 5 weeks ago, and we have had the insurance for 8 months, they are saying it's pre exisitng and won't pay. Now we have to get all these forms filled out so they can do "Further assessments" and in the mean time pay private rates in a private hospital and also pay the surgeon and anaesthetist. Fingers crossed fo a tatts win!!!!

God i can't wait to say something positive to you!! I feel like an angry whinger.

Thanks Laura, It is nice to know that Hailey will be ok eventually, just seems so far away at the moment.

Hi Amy girl, The ortho surg is hopefull he won't have to open up Haileys right hip, but certain he will have to open the left one. I hope our Hailey copes as well as your Hailey,

Thank you all for your support.

[LauraK]

Hi Jo

We will all be thinking about you all on Saturday. Can't believe it about your insurance company, thats the last thing you need, it never rains but it pours! I know it's a cliche but you will all come out of this awful situation stronger people.

My husband is convinced that the brace Harrison is in is making no difference as we can't seem to see any changes hsi hips. I really hope he is wrong as if the brace isn't working then it's likely he will need surgery when he is a year old. Anyway, we will have to wait and see what happens in two weeks time when we are back at the hospital - we know not to expect too much.

Best of luck for Saturday Jo.

Love Laura x

[HKBess]

Hi Haileys Mum

My experiences with my DD is very similar to Amy girl. My DD was diagnosed at 6 weeks and went in for open reduction on both hips at 3mth, spica for 6 weeks (during summer) and a brace for 7 mths. She even started to crawl in the brace.

She is now 3 1/2 and you wouldn't even know there she'd had dysplasia.

While I can now laugh about trying to keep the spica clean, I still have vivid memories of the emotional time it was, and am thankfull for all the family support we got.

All the best

[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.

[Miss.September]

Hi everyone!

Well the time has flown and the plaster is off!!!!

DD ended up with the spica on for five weeks - it came off a week earlier than expected, which was an absolute bonus. Her hip is now stable and she's in the brace which we can take off for bathtime. We have a follow up with the surgeon in six weeks. She's loving not having the spica on, it came off yesterday, and she's made the most of swinging her legs from knee down. I've certainly loved being able to hug her, and the lightness of her again!

I just wanted to write to everyone about to go through this or is in the middle of all of this. Please don't despair. It's awful and heavy, but once its off, you look back and go, wow, we dealt with all of that. I am so proud of my darling baby, who turns five months old tomorrow. I have a huge amount of respect for her patience and just her nature, she didn't let this bother her. I was petrified that she would revert into herself, but she did the opposite - I had the only shouting, laughing baby in the doctor's waiting room! She learned how to blow raspberries, she laughed when she was tickled and she always smiles at strangers, with bigger grins for those she recognises. And all of this started with the cast on.

So now, even though the brace is on for 23 out of 24 hours, I can't wait to see what it will be that she will learn next.

Anyone going through this - keep calm, get as much advice from people going through this as you can, and know that the end of it all will come qucker than you think.

Corelly xx

[Miss.September]

Just reading through the posts -

Alexia's Mum - how awful for you. My DD was so upset when the brace went on initially, she was three months old. We battled with the thin bandage stockings under the brace until the third week, when we were told to try socks. We got socks to fit a toddler with the shoe size of 2 and cut the toes off. Some thicker, fluffy socks might give her some relief.

Hang in there, our babies are so very brave.

Corelly x

[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