Hip Dysplaysia Support Group #2

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!