Hip Dysplaysia Support Group #2

Hello,

I am new to this blog, but my 4.5 month old baby, Lucy, got a DB brace on monday for her left hip dysplasia. The doctor/physio and orthotist all told me she would adapt really quickly. She is fine when she is awake but has hardly been sleeping at night. We have had a week of no sleep! She was a brilliant sleeper before. Is this going to settle soon? Has anyone got any suggestions? I have been giving her panadol, have put a pillow under her legs and nothing seems to work. I am going crazy from sleep deprivation.

Thankyou!

Josie S

Hi Josie,

Would love to tell you that the sleep issue will be fine, but I'll give you hugs instead :hug:
We found that after our first initial week of having the brace on, DD settled into a sleep, where she wasn't out all night, but we only had one or two wake ups and this continued throughout much of the time she was in the brace. I wish I had some better news for you. Try to sleep when she does during the day. I know I did on those days where I was fuzzy and bleary eyed and it did make the world of difference.

Corelly x

Hi,

I found out yesterday at DS' 10 month check up that he may have hip dysplasia. Paed appt is set up for next week.
Im really not finding a whole lot of relevant info out there though, so if someone could send me a link or point me in the right direciton that would be great.
MCHN says he has conflicting symptoms - extreme hypermobility - his hips dont click at all but there is so much movement there, more than normal. When he sits from standing up he does a full split with his left leg for example and can turn both legs out (but does it more with the right)
sh thinks the rolls around his nappy area and thighs arent 'chunky' enough and that his hips are uneven (mine are too though, and I also have the hypermobility).

What should I expect from the paed appt? MCHN mentioned that they would probably order an u/s?

Sorry for the questions its all very confusing. Is it normal for it not to be picked up til this stage?

Pandora - hope all goes well for the appt, keep us posted! Given your DSs age, I reckon they might go for an Xray, as he is older and has more bone formed an Xray would likely give a better picture, I think ultrasounds are more used in younger babes. The paed will likely do a clinical check - eg turn out the hips and check for clicks, look at how even his hips/legs are etc but will be unlikely to confirm much until and xray or ultrasound is done, you will probably be referred to an orthopedic surgeon or specialist after the xray if anything shows up - are you in Melb? I know alot of our thread parents have gone through the RCH. My DSs dysplasia wasn't picked up until 5 months which is quite late, but it may be that IF your DS has dysplasia it is mild which is why none of the obvious signs have been there previously.
Also I highly recommend NOT looking to far around the internet as you will come across info from very mild to very severe cases and it can seriously do your head in if you try to self diagnose. A good page to read might be this one Kids health info for parents

GL - I know this must be a worrying time

Naomi

Thanks for the info, I will chek out the link :)
Yes we are in melb.
I was talking to my physio who basically said hypermobility and hip dysplaysia were the same thing? I'm trying to to look at too much stuff..google is not my friend, yesterday I was convinces he had a tethered spinal cord :(
The clinic we are going through to see the paed will refer straight to RCH if they think there is an issue so that's good.

:

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"Oh, she's not crawling yet, but she's nearly one"

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OMG Corelly - I'd want to smack them in the head - how insensitive!! I absolutely HATE it when people comment on babies progress etc, I have learnt since being a Mum that a babies development is soooooo individual normally anyway, let alone the differences being braced months on end also creates. Next time someone says something reply "Oh, so you haven't developed common courtesy yet, but your nearly (insert appropriate age here)" hehehehe. I hope DD has a wonderful birthday this weekend - how are you celebrating? What an exciting time! I am in full birthday-plan mode atm, have sent out invites, we are having a combined 1st Birthday/Naming Day so I am meeting with the celebrant tomorrow to work through our ceremony, very exciting!

Josie - we are in a DB brace also, the only other thing I can recommend is that we actually had a thin toddler pillow for our DS that we had under his head and shoulders as well as the rolled up blanket under his legs, this seemed very comfortable for him. I recall reading that another idea to try to increase comfort is to put a doona or something under the babies bottom sheet (almost to create a pillow top effect) and this increased the comfort factor, but you don't want it to be to soft that they sink in to it too much as then you'd create a SIDS risk. Although my DS sleeps pretty much 12-13 hours over-night, its not uncommon that I may have to resettle him a few times, even if its just with the dummy, I think sometimes the brace stops them from shuffling around to find a comfy position and wakes them unfortunately. I agree with Corelly, sleep when-ever you can. Or co-sleep if thats something you want to do, we find this helps on very unsettled nights.

We are going well, I've returned to work so DH and DS are enjoying their time together as DH is currently as SAHD until July. Bailey will be out of his brace in time to start childcare which was my goal so I am very happy about that. He is getting around with his bum shufflely crab like movements, or backwards crawling (more just pushing himself backwards), no commando crawling here, just leaping on things from a sitting position. We have 64 more days in the brace, I really cannot wait, I have bought a few outfits for Bailey that he will be able to finally wear - very exciting!

Best wishes to all our DDH familes out there

Naomi

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The clinic we are going through to see the paed will refer straight to RCH if they think there is an issue so that's good.

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I'm in Adelaide so haven't obviously gone through RCH but from all the reports from Victorian members they are awesome and will take excellent care of your DS if needed so great that you have access to their services :)

Yeah the internet can cause more worries, rather than provide the simple info you need so you really need to read everything with a grain of salt. I had myself convinced that my DS would need surgery or worse :o. His case is moderate and our treatment is a dennis brown brace for 6 months (we are 4 months in), but in the early days it was just devastating.

Hopefully the time until your appt will go quick, waiting can do your head in :(

ETA - not sure if hypermobility and hip dysplaysia are the same thing, I've never had hypermobility mentioned to me from our specialists, sorry

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"Oh, so you haven't developed common courtesy yet, but your nearly (insert appropriate age here)" hehehehe.

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Hahaha Naomi - you always know how to make me feel better. Love ya! How exciting that Bailey's only got 64 days left in the brace. He's doing things that DD still can't do, so once he's out, hope you've got fast running legs to chase him as he bolts away! We're having family day on Sat for DD's birthday, a quiet bbq with 15 immediate family at home. We've bought her a sandpit, some books and some musical instruments so hopefully she'll love it all.

Pandora - good luck with your appointment and I agree with Naomi - don't google! I'm in Melbourne too and our surgeon has been absolutely fantastic. When we saw the paed when DD was 7 weeks, he just ordered an ultrasound because he couldn't feel anything unusual in the examination. Once the ultrasound came through, we were instantly reffered to our surgeon. RCH are nothing but professional too and lovely caring people. DD has a new issue (groan, non hip related) that she needs an ultrasound for so we're off to RCH again and I so much faith in them. If there is something that needs further investigating, they're the ones to do it.

Corelly x

Hi everyone

I haven't been here for ages but its nice to read some comments from the faithful regulars (!) as well as some newbies!

Our DD was 11 months on the weekend and has been in her rhino brace for almost 9 weeks now. We had our first follow-up appointment with ortho last week and he was happy with the position of her legs in the brace (viewed by x-ray) but said it was still too early to tell how long she will need it. In the first instance, he said a minimum of 6months. So many people have since said to us things like 'oh we had a friend etc.. who's baby had to wear that for 12 months'. Love the positivity!

Anyway, I guess the good thing is that we have been incredibly luck and she hasn't made a fuss about the brace. She even still sleeps on her side - with one leg stuck straight up in the air! Looks uncomfortable, but she doesn't seem to mind - bizarre!

For a month now, all she wants to do is walk along holding hands. This is terrific of course that she can manage it, but my back is getting sore! I also think some serious frustration could set in soon as I don't see how she will be able to walk solo - the brace creates of a bit of a pelvic tilt and of course her legs are so wide apart!

Hope everyone else out there is going along OK with various casts, braces and other hip issues! It's great to have this forum for support and to bounce ideas and experiences off one and other.

x

Hi everyone,

It has been a while since I've posted but I admit that I have been in hiding with my head officially in the sand.

For those who are newer to the forum our DD 2 was diagnosed with hip dysplacia at birth and went into the pavlik harness at about 2.5 months for a period of 3 months. At DD 2's first review (after she had been out of the brace for 3 months) with the paed he said he thought her hip was still lax in the joint and sent us to see the paed othopedic surgeon. Of course it took us a month to get in to see him so I've spend the last month worried and was trying to work out how bad - brace or cast - it would be. Everyone will know that sick feeling.

The paed ortho had requested another x-ray and specified the von rossen position - legs at 45 degrees not down. Apparently it is harder for older babies to wriggle in that position and give a false positive. The examination went well and the new x-rays showed that her hip is in the joint and the angles are good. Our little minx had wriggled in the first x-ray making her hip look bad. The paed ortho is going to use our x-rays for when he talks to paed to show how x-rays can show a false positive.

The best news of all is we don't go back to the paed ortho untill DD2 is two years old.:dance:

Hope you are all well,

Crosswig

Crosswig - That's fantastic news! You must be over the moon!

Smarti - How cute that your DD sleeps on her side. It's a hard thing to see, but they somehow manage to cope. I'm sure she'll figure out a way to walk solo, but it's awesome that she can, even at the expense of your back. Maybe DH can give you some massages. Maybe all of our DH's should!!!!!!

It's been about six weeks since we've been brace free. DD has learned how to stand up and the other day showed us that she can actually crawl "properly". Her preferred method is still commando crawl, but hey, she can do it so I'm pretty happy about that. Got our next surgeon's appointment at the end of May, and there's a little bit of anxiousness there, naturally, but I'm hoping that because DD was in the brace for so long that it's well and truly behind us.

Corelly x

Crosswig - Just wanted to say when we were at airport not long ago, we saw a little girl walking in a brace unaided - we were amazed.

Hello, I ave just found this forum and it feels reassuring to know the emotions I am feeling are shared by others.

My beautiful 2 week old girl was fitted with a DBB yesterday and I can't believe my soft little bundle is now this difficult to cuddle brick. I feel I have lost the chance to have her be a newborn. My son had a very difficult infacncy, and my daughter had been the complete opposite and I was loving having a newborn around.

I know that this is for her future and of course I didn't need to think twice about the need for the brace, but I feel I have lost something and I am glad that others on the forum have felt this way too. I feel incredibly selfish for feeling this way, hopefully it will pass over the next few days as I get more used to the brace.

Sorry to use my first post for a whinge, but I really needed it.

Liels,

Welcome to the forum. I'm glad that you found it. As well as the support one of the best things for me was following everyone and hearing their happy endings. Helped me hold onto the fact that there was an end in sight.

This first little bit is tough and there is a feeling of loss that you have to work through. If you need to have a vent feel free to do so here. Everone here has had their bad days and everyone understands.

Corelly, best of luck for your next appointment.

Smarti, that sounds so cute!

Crosswig

Leils - Big hugs to you. It IS the hardest thing to have this beautiful newborn to hold and then to have them tied up in metal or plastic and it's rotten. There's no other way to say it. The rollercoaster of emotions that comes with it, especially for you with your hormones still coming down, it's just awful. Keep coming in here and talking about it, good days, bad days, you'll get loads of support. I found it to be invaluable when nobody else understood what I was going through and until I found this group, I felt like I was the only one looking at my beautiful daughter in such a way.

I hope the transition into the brace goes quickly for you and please don't feel selfish about the way you feel, that you have lost something. My DD went into her first brace at 7 weeks and I too felt so robbed of that beautiful little bundle that just moulded to me, instead to have a baby at strange angles. Don't feel bad for the way you feel, just feel it and vent it out and we'll support you the best ways we can.

Corelly x

Thanks Crosswig - how's DD2 travelling?

Wysiwyg - It's funny to see another bub in a brace, must have been pretty cool to see that baby managing to walk in one. I bumped into a lady in the shopping centre carpark with her 4 year old daughter who pointed out my DD and said "That was the brace you were in honey!". We had a brief chat and she said that her daughter hadn't looked back from the day she'd come out of it. There's hope for us all!!!!

Mummy Naomi - How many days?!?!

Corelly x

Corelly,

DD2 is doing really well. Once she got out of the brace she started rolling over really quickly. She does an ultra quick leopard crawl and is just starting to do a 'proper' crawl when the surface is a bit rough for her. DD2 now LOVES pulling up onto things and standing by herself although she gets sooooo mad when she can't get down! It is so funny to watch her as she just has no fear at all.

Crosswig

Dear Corelly and Crosswig,
thanks so much for your words of encouragement. Our journey is just beginning, but already I feel a litle better. My daughter seems to be adjusting well to the brace, and I am figuring out how to bath her etc. So it's not as difficult today. Yesterday was a bad day, but having your support was wonderful.

Will keep checking in aswell as follow everyone elses travels
Leils

Hi All,

Free to a good home

I have some home made babylegs (baby leg warmers) for anyone that would like them. I used them under DD2 DBB to help prevent blisters. They are in pink and white colours generally. If they have to be in the brace I say at least let the cuffs be a jazzy!

They may be useful for other types of braces but I know they were good for the DBB

PM if you would like them and I will send them to you (first in will get them).

Haven't been in for a while but just to give everyone some light at the end of the tunnel. DD2 was in DBB for 6wks from 12-18wks, her hip dysplacia was mild but never the less was in the brace. Anyway she has started walking at 10mths so time in a brace does not mean they will be behind.

Bridee - DD2 walking! That's awesome!

Leils - Good to hear that your DD is adjusting well. Hope you're still okay with it all.

Corelly x

Hi Guys,

I have been meaning to post for the last week, but have been busy with my DS's First Birthday Party plans - can't beleive my baby will be ONE on friday - where does the time go?

Smarti - Don't you LOVE the stupid things that people say. I ended up just smiling now when people say stupid things re the brace (or perhaps its more of a grimace LOL). I think people just think they should say SOMETHING and just blurt out whatever thought comes into their head. Wow re your DD walking along holding hands in her brace, thats fantastic. I don't think my DS will attempt that until he is brace free, but, hey you never know

Crosswig - pleased to hear your good news, congrats, good not to have to go back to the paed ortho for a while! I am over Drs and Specialists myself hehehe

Vic - One of my co-workers daughters can walk along with her brace - she has just gone from a DBB to a Rhino, but could walk in her DBB - she has just turned two. Obviously she walked a bit 'crab like' but she was prett determined and did it! Awesome stuff :)

Leils - welcome, we all know what you are going through. I remember bringing my DS home from his first brace fitting and rocking him to sleep with tears streaming down my face as all I could feel was the metal and leather of his brace, this is not how our babies first year should be. Please use this forum to gain support and vent when you need to, I hope we can be of some help to you. Even now after 5 months of the brace I have days where I want to take to it with an axe, but fortunately as time goes on these days become much fewer, but as Corelly mentioned, its an emotional rollercoaster

Corelly - We have about 31 more days in the brace, I really can see the end now, I cant wait!! Bailey is starting to show some frustration at the brace as is attempting to stand, but can really only get on hands and feet, with his bum high in the air, but of course cant straighten his legs to stand. He is crawling like a speed freak though, he can get from one end of the house to the other in the blink of an eye and will follow me around the house, hilarious!! We are in full child proof mode now! I never thought he would crawl so well in the brace, I am very impressed with his determination

Bridee - congrats on a walking bubba!

Well as I mentioned to Corelly, we have about a month to go, then we have an appt with the ortho surgeon 3 weeks after the brace comes off to xray and see how we are going, I am hoping that all will be well and we'll stay brace free at that point.

Naomi
x

I thought we were through dd1's hip displaysia but she has complained of a sore hip the last few weeks which is freaking us out a little bit as she has no memory of the brace. She is due for a check up in July but I managed to get an appt next week so we can put our minds at ease, she is an active little girl so fingers crossed it's all ok.

Fingers crossed that it's nothing to worry about Black Rose.
:crossfingers:

Thanks I am sure she will be ok bit all the feelings come flooding back

hi everyone - this is my first post on this forum. I was searching for older children with dysplasia and this came up on the search.

my daughter has just been diagnosed with hip dysplasia, it is a bit of a shock at the moment as she is almost 3 years old!!! it was never picked up as a newborn but was found recently on xrays for something totally different, she has no pain or other symptoms!
my mum (who is a midwife) arranged for us to see a docter that she works with who will most likely be sending us to a paediatric orthopedic surgon at the childrens hospital in randwick - he had a quick look at the xrays but our actual appointment is on friday and should know more then but its not sounding too good at the moment!
For those of you who go through the public system what is your experience? Im so worried its going to take months to get anywhere!

Ive just read through all your posts - what strong parents you all are with even braver children! i look forward to getting to know you all (under not very nice circumstances) and offer support where i can.

Hi Pink Fairy - that must have been a real shock, this forum is a great source of support though.

I can't really comment on older children with DDH as my DD was diagnosed as a new born but we went through the public system and was extremely quick, e.g. my doctor did the referral on the Friday I got an appointment on the Monday at RCH Melbourne - I don't know if this was quick because the quicker treatment is started the better especially when they are very young - but I have been so impressed by the public system. I know on the RCH Melbourne website if when looking up their outpatient orthapedic department they do prioritise hip dysplasia cases, and have hip clinic etc.

Am sure someone who has experience with hip dysplasia in older children will come along soon, but just wanted to share my experience of going public (albeit in Melbourne, Randwick is Sydney right?)

Welcome to the thread Pink Fairy - sorry to be saying that! I agree with Wysiwyg - RCH was great in their urgency of everything. We had a private surgeon and the surgery DD had was in a private hospital, but we have used RCH for her MRI and xrays and there is no mucking around and they are just lovely lovely to deal with. I'm sure the children's hospital in Randwick will be the same. I don't think they like to wait with anything to do with hips because the earlier it's caught the easier it all is to treat, so I'd be surprised if you were having to wait months to be seen.

Good luck and I hope it's good news for you.

Corelly x

Hi Pink Fairy

I hope everything gets sorted out for you quickly. My daughter is almost 3 now and I can't imagine how you must feel. She was diagnosed at 3 months and was in a harness and brace but has been brace free for quite a while now.

We have gone through Westmead Children's Hospital for all her treatment (for hips and another condition) and they have been fabulous. I am sure Randwick is just as good. Good luck with the initial diagnoses and treatment.

Nicole

Hi everyone,

Well DD has been out of her brace for three months already! And it's time for our check up......and I'm as nervous as hell.

Scared that something has gone wrong. The rational side of my brain is telling me to not be stupid because our wonderful surgeon was so thorough, kept her in the brace for a long time to be sure there would be no issues. She can stand and crawl with no issues. But there's that other bit of my brain that doesn't want to go to the appointment, hates the x-ray guy and just wants to climb into bed with the doona over my head and pretend that none of this is happening. I thought I was over all of this, but as the appointment looms nearer, the fears are shouting. Monday can't come quick enough, or slow enough!!!

Corelly x

Corelly - Good luck for monday, I totally understand the fear around the appointment, you dont want things to go backwards and no doubt everything will be fine, but that damn nagging fear is always there isn't it?

Well we have 7 more sleeps until we finish our 6 month journey of DS being in his brace, Its exciting to think that this time next week he will be brace free - I really CANNOT wait. I'm very ready for this all to be over. We go in for an xray almost a month later to see how the hips are going brace free and then I understand that DS will be monitored for a few years after that

Naomi

Corelly - Fingers crossed for your Monday appointment :crossfingers:. The wait before these appointments is endless and awful. I also found with the x-rays you don't get the immediate feedback that you do with ultrasounds.

Naomi - Great news for you! Glad to hear that your journey is almost at an end. Not that you'd wish the time away but it is good to be over IYKWIM.

Crosswig

Thanks Naomi and Crosswig! Only a few sleeps now Naomi!!!!

We're just back from our appointment and the news is AWESOME! We don't have to go back for 12 months!!!!!!!!!!!!! DD's hips are great, our surgeon is happy with her progress! He said that after the 12 month visit, then we're on the two year check-ups until she's 14 so hopefully we're all smooth sailing now!

I'm so proud of her I could burst!

:leap::leap::leap::leap:

Corelly x

Corelly so pleased your DD's hips are going great, great to know you don't have to go back for 12 months! We have our next appointment beginning of June, DD will be 1 just, and hoping we get similar good news - like you I think all is ok but still have those nagging doubts.

Thanks wysiwyg and fingers crossed for your appointment next month! xx

Corelly

Just new to this group

We have a daughter (now nearly 5), diagnosed with hip dysplasia when she was 9mths, had closed reduction and 3 month hip spica at 11mths and brace for about 1 year. All is going well, she is a very bright and happy girl, but needs further surgery (Salter Oesteotomy) in the next couple of months. Not sure what to expect.
:hide:
Dr thinks she probably wont be in a cast at this age, but will need a wheel chair for about 2months afterwards, i suppose im just looking for tips and knowledge from others in similar situations re what to expect in the weeks afterwards and any great ideas you have discovered.

I just read an article which suggested gently using a plasic egg flip to poke nappy inside spica cast and wished i knew that about 4 years ago!

Its great that these forums exist, its nice to know we are all not the only ones.
Luck to you all

Welcome to the group Madcat. My DD is only 13 months old so I can't really offer you any advice, but just wanted to wish you well and say that there will be someone here who can offer you some information. But the rest of us will be here to listen to your frustrations and cheers.

Corelly x

Hi!

I'm new to the forum, My DD (9m) has been in a DB brace for the last 5.5m and we have our next appointment on Monday for a x-ray and follow up! I'm so nervous and anxious about it! She has had a 4 hour a day break for the past 8 weeks so I'm hoping that will increase after Monday :pray:

When she first went into the brace her hip was fully dislocating and had no coverage and at her last appointment it was at 90% or something?! so they are very happy with her progress so far. The specialist said that she had gone from severe to mild dysplasia and the shape was perfect it was just that they were still slightly shallow.

Anyway sorry for the rambling..... Hopefully I will be back on Monday with some good news, We are really hoping that she only has to wear it to bed at worst :pray:

Thanks for warming us into your group, we also are happy to offer our support and cheer you all on, through this bumpy road to Hip-happiness.

Just herd from hospital, Little Miss K is going for hip op in less than two weeks, She is excited, I am terrified! We have been totally open with her in explaining the op and afterwards, (couldn't have done it any other way with all the questions a four/nearly five year old generates!!)
I cant believe how resilient she is, and how her reaction to the coming op was "YEAH!" with jumping up and down!

Welcome Madcat! The parents in this forum are super supportive so I hope we can support you through your daughters op!


As for us - we have been brace free for a week now after 6 long months. Its simply wonderful! DS is loving his new found freedom and making the most of it (already standing) and his confidence has sky rocketted. He has gone from being quite clingy to super independant almost immediately. I'm so happy that our journey is coming to an end. We go back to the surgeon in 3 weeks for an xray and checkup to see how DS is going brace free - hoping for the all clear then, I believe we then have regular check ups for a while after that as DS is still growing.

Hope everyone is travelling well through their own journeys!

Naomi
x

Good luck, Madcat. It's always harder on the parents! At least your daughter is excited - I'd imagine it would be far worse if she was frightened. Hope all goes well for you all.

Naomi - YAY for DS!!!!!! Fingers crossed for that first appointment, I think that's the hardest one.

We're all well over here, so hope everyone is okay too.

Corelly x