Hip Dysplaysia Support Group #2

[Miss.September]

Hi Josie,

Would love to tell you that the sleep issue will be fine, but I'll give you hugs instead
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

[Pandora]

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?

[MummyNaomi]

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

[Pandora]

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.

[MummyNaomi]

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.

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 . 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

[Miss.September]

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

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

[smarti]

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

[leils]

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

[bridee]

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.

[Miss.September]

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

[MummyNaomi]

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