Hip Dysplaysia Support Group

[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

[crosswig]

Mummy Naomi,

as a new member myself welcome to the forum. I'm sorry to hear about your little one but glad to know that you have made your way here. Reading back over the posts there are a lot of very useful tips. A while back there was a consolidated list of questions to ask at the ultrasound so you have a better idea of your situation. Another good tip was - if possible - take someone along to the early appointments so that together you have a better chance of remembering important information.

Best of luck for your next appointments and hopefully all will be well. If not, remember there is a wealth of experience and support here for you. The members will have at least experienced some of what you are feeling right now.

Best wishes and fingers crossed for you,

Crosswig

[nicoli]

Crosswig - I would definitely ask again for a certificate. If your work is prepared to cover you with sick leave that's all that matters. Just let the paed know that. You shouldn't have to use up your other leave.

Naomi - welcome to the forum. Good luck with everything. You'll just have to wait to see the outcome of the test before worrying too much. The treatment will depends on the severity of the problem. Our daughter was in a pavlik harness at 3.5 months and then a dennis brown brace at 6 months so you just never know. I know what you mean about wanting to run away and hide. I felt like that at first too. I was so worried about how it would impact on my daughters development and temperament. I'm sure deep down you know that the problem needs to be fixed and as you will see on here - even if your bub's development is delayed due to treatment, they will back on track in now time. Let us know how you go with your appointments in the coming weeks.

Nicole

[MummyNaomi]

Thanks for your support Ladies!

We have our ultra sound booked for tomorrow morning then back to the paed next wed, then onto the orthopedic surgeon from there - I think the wait will do my head in but there is not much we can do about it. Nicole you are spot on, my biggest worry is how it will impact Baileys development, he already has gross motor skill developmental delays eg he cant lift his head or prop himself up from tummy time position among other things and is almost 6 months so this is just another hurdle to overcome and will set him back even further potentially

Ahhh, this parenthood gig is so worrying

[Miss.September]

Hi everyone!

I just thought I'd write a progress report because I'm excited, and for everyone out there who are just beginning this journey, please don't despair too much - my DD, while out of the brace, ROLLED OVER!!!!!

For anyone going through this you can understand what an achivement this is. She wasn't even three months when the first brace went on, then into surgery and a spica and now into a rhino cruiser brace, only coming off for two hours each day. I am so proud of her determination to do this and I know that once this brace is off for good there will be no looking back.

Hang in there everyone, you're not alone, and there IS light at the end of the tunnel.

Corelly