Hip Dysplaysia Support Group #2

[Skyesmama]

Thanks Crosswig, Yes you're right i do tell him all the time that i love him. We live in Israel and my hebrew is not so great so finding my way thru the system and a counselor that speaks english is a REAL challenge. Everytime after an appt. we go for a treat. I will talk to a anthroposophic doctor soon and hopefully he can help us. LOL

[crosswig]

Chazanlow - did the hospital get back to you today? I'm not sure what treatment your little one is most likely to need. Untill you know, try and avoid 'borrowing trouble'. Before we found out about DD's treatment I imagined a lot of things that didn't come to pass. Everything that I had in mind was much worse than it actually turned out to be.

Skyesmama - best of luck getting someone who speaks English and who has the right skills for your DS.

We had our appointment with the paed today and the brace is off . I have been SO excited and wanting to point out how wonderful it is to strangers in the street. I have restrained myself and have only been telling people I know. DD has been pretty happy too there has been much kicking and sucking of her feet. She has even almost rolled over (can you tell I'm pretty proud?).

We will have ultrasounds or x-rays every three months untill DD is 18 months old just to keep an eye on the hip. Fingers crossed it all stays good.

Crosswig

[MummyNaomi]

Crosswig that is awesome news - I really look forward to that day - congrats!

We took to our carseat with a saw today to make our own 'amendments' and keep Bailey rear facing, it actually worked quite well, we just cut out the plastic moulding where his legs hit the sides and we have created our own DDH Car seat LOL. I think its alot safer than putting him in a too big toddler seat (he is quite a little baby for his age). I am no longer housebound and can take him out in the car again - Yay!

[chazanlow]

crosswig - Yay thats fantastic news!!! I'm very happy for you. I ended up ringing the hospital and was told that we will have to wait another week just to hear when her appointment is going to be I'm not sure how long we will have to wait after that.

MummyNaomi Thats great that you are no longer housebound! We have 3 across the back and it only just fits as it is, hopefully our car seat will still be ok.

I've noticed in the last day that her hip seems to be worse everytime I change her nappy I can feel it clicking, I'm going to go back to my GP tomorrow and ask her to ring the hospital and see if they can hurry things along! I'm really kicking myself for not getting her checked out sooner and not having private health insurance I really feel this is my fault

I have no idea if there is something I should be doing in the meantime (or not doing!) to help it.....

[bridee]

Chanzanlow - Try not to beat yourself up too much, what is done is done. Good idea to get GP to call as that might hurry things along. In terms of going privately, I know you don't have private health insurance but you could still go private if you had the money to pay for it. I have private health insurance but unless she needs an operation private health insurance is of no assistance, you just have to pay yourself anyway. The costs involved are seeing the Orthopaedic Surgeon, there costs vary depending on who you see but each visit could cost between $200(generally only the 1st visit is expensive) - $80 for follow up app (these were roughly what our Orth Surg charged) and then number of them depends on how long treatment is needed but app are often every 6 wks. In terms of the brace the costs vary depending on brace needed. Since your DD is 16wks she won't go into the pavlik harness. Could be DB bar - at RCh that is $250 which includes are follow app with them. Anyway hope that helps. Just something to think about.

There really isn't anything you should/could be doing until you have your app's but when changing nappies don't lift her bum up by the ankles as alot of people do as that puts pressure on her hips.

Crosswig - Congrat's it is a wonderful feeling being brace free.

[wiggs]

Crosswig - congratulation that is wonderful news Very, very excited for you. i can't wait for that day for our DD. Must be beautiful giving nice close cuddles and thinking of it, just about everything must be better. We've only been in our brace 10 days but already miss the brace free time so much.

Mummy Naomi - well done that is very inventive. Sounds like a great idea. Our DD is quite big for her age 70 percentile for height and weight so forward facing is OK for her.

Chanzalow - going to the dr. sounds like a great idea see if you can hurry them along a little. I actually rang the RCH orthapeadic dpt myself and spoke to Pru (she is our clinician) this did wonders. I explained my situation to her, the age of my DD and all that had been going on. We had had our ultrasound there the day before and she was able to look at the report on her screen. It was amazing, she got us in the following Monday (I rang on friday) and our journey began from there. I found the orthapeadic dpt number on the RCH website and then explained to the receptionist that I was quite concerned and anxious about how long the wait would be. She then put me through to Pru's message bank and she called me back a couple of hours later.
Anyway see what you think but in the meantime it sounds like you need to stop beating yourself up. What matters is that you are getting your LO help now, not what has happened in the past.
I also second that nappy changing thing, they were quite clear to us at the childrens that we shouldn't put her legs together, especially when nappy changing. During Chloe's hour off she is allowed to do what she likes with her legs but we are not to push them together at all. Hope that helps

[chazanlow]

Thanks for the advice! I will definately give the hospital and my GP a call tomorrow and try and speed things up! I will also look into going privately as well.

wiggs How old is your DD?

[Dee99]

Hello All!
I came across this forum searching for pregnant mothers with past hip dysplasia and wanted to offer some comfort to each of you struggeling with this issue with your children. I am 29 years old and was diagnosed with hip dysplasia in both hips at age 2. I had several surgeries from age 2 - 11. I am fortunate that to date I've never needed a replacement and although I do have scars on both sides I have no difficulties now =) as a child I was able to play sports run, jump and even dare to ice skate (I was terrible at it but that's just because I'm clumsy haha!) I've had a wonderful life thus far and thank God that my previous disabilities made me the strong woman I am today.... and I am a mother of a fantastic 5 year old who was born perfectly. Be strong, pray and always tell your children as my parents did even when I was in a full body cast that they can do anything any other children can! It will all work out! I'm living proof =) may God bless each and every one of your families!

[Miss.September]

Hi everyone,

I'm starting to really struggle with all of this now. I'm so tired and pushing my own limits and I just want this rotten time to be over. The quick run down on us - DD was diagnosed with hip dysplacia at 7 weeks old, left hip almost non-existant, right hip shallow. Into a Dennis Browne brace for four weeks 24/7, didn't work, off for one week, open reduction a week before she turned four months old, plaster for five weeks and been in the rhino cruiser ever since. She is now almost nine months old.

We've managed just fine until now, kept really positive and managed. We're allowed to have the brace off for an hour in the morning and an hour in the afternoon, and for baths. In the free leg time, DD has learned to roll over, she can sit up for long lengths of time and she is an extremely happy baby. I'm blessed with all of it. BUT I WANT IT TO BE OVER NOW!!!!!!!!!

I have a surgeon's appointment on Monday, yet another x-ray to see how she's growing. The last one, her hips were only just beginning to curve. I dread these appointments now. So I'm just sitting here now, sad and frustrated and wonder how much longer is this going to go on for. She's just so beautiful, family, friends and even all her doctors remark on how happy she is and I know she won't remember any of it. But when I'm watching her roll around on the floor like she is now, rolling from front to back in the rotten brace - she's determined - I just want her to be free. I'm sick of people staring at me in the supermarket. I'm sick of people thinking that I can't hear the whispers "What's wrong with her legs", "Oh look at that, poor thing".

I'm sorry to bring such doom to what tries to be a positive group and I do take what's said on board. I'm just so so tired and all I want for Christmas is for my baby to sit with us at the dinner table brace free.

Corelly.

[wiggs]

Oh Correly I cry with you. Your words echo what I so often feel yet am too afraid to say and I've only been doing this a couple of weeks. Big hugs coming your way

[MummyNaomi]

......all I want for Christmas is for my baby to sit with us at the dinner table brace free.

Oh sweetheart, that bought a tear to my eye, I hear ya..... I wish you could have your christmas wish.... I know exactly how you feel, I am devastated that Bailey will spend his first christmas and birthday in the brace....

Its so wrong that this is how our children start their lives, I don't think any of us imagined this is how our babies first year would be (or second, third for those with older kids). It a cruel twist of fate and it just plain sucks. I hope your DD time in her brace ends soon xx

[chazanlow]

Corelly Big hugs from me too! I've only discovered this group and my baby has yet to begin her journey but I can relate, dont ever feel sorry for letting your feelings out! I hope you get some good news on Monday.

I've spoken to Prue at RCH, she actually rang me first thing this morning. She looked at DD's file and said more than likely she will be going into the brace (I'm assuming this will be the DDB?!) Her appointment is Tuesday morning so I guess we will know then.

Thanks for all your support! I was very lost until I found this group.

[wiggs]

chanzanlow - that is fantastic. Prue is great, although talks fairly quietly so make sure you hear her well. I would suggest bringing a support person with you if possible and allowing yourself most of the day as I found it took us the whole day as we had to go to prue, x-ray, back to prue, then to orthotics. There was lots of waiting around but we were just relieved to finally be getting treatment for our little one. The people in orthotics were also great, we see Liam. They tell you heaps about the brace and have great posters of what hip dysplaysia is all about, we found them to give us the clearest explanation of the whole thing.
Will be thinking of you on Tuesday it is quite an emotional thing once your bub does go into the brace. I kept thinking I was coping great at the hospital, I think because I was surrounded by a lot of sicker kids. But once I walked in my door it really hit home. Allow yourself time to grieve. And in the meantime give your bub heaps of baths and floor time

[crosswig]

Corelly,

I'm so sad to hear that you are having a hard time at the moment. I commend what others have said and to let your feelings out. It IS sad when our babies are in treatment for special events like Christmas and Birthdays. As mothers I think we try and be so strong for everyone else that when our own feeling hit us, they come down like a ton of bricks. We'll all be thinking of you on Monday. Best of luck.

Has anyone got experience of putting a VERY young baby (who is in a pavlik harness) into a sling? I was always too scared but someone has asked me about this.

Crosswig

[chazanlow]

wiggs - Thanks for the advice! Unfortunately I have to go on my own as my DH will have to look after our other 2 children who are 2 and 4, we don't really have anyone that can look after them. I was wondering how long it would take actually so I will allow the whole day! Did you have to buy a new car seat or pram etc? What clothing do you recommend?

crosswig - I am sure that I read somewhere about a baby born being ok to use?! But it was when I was doing my many google searches that it came up so no idea where to find out now, The best thing to do would probably be to ask a specialist, I can ask Prue on Tuesday if you need me to....

[Miss.September]

Hi everyone,

Thanks so much for the support..AGAIN!! This site is just so valuable and I don't know what I'd do without it.

We've all got our fingers, toes, eyes, everythings crossed that DD will be brace free as of Monday. I'll even accept it if she has to still sleep in it. But just let it come off during the day!!

Hope everyone is going okay on this journey and that these brave bubs of ours are still managing some smiles.

Corelly

[wysiwyg]

Crosswig - how young is very young? - we had DD in hug a bub sling at 7 weeks (when she got brace on) but she was in Denis Brown brace, hug a bub keeps the legs apart in a similar position to the brace anyway so that worked quite well - assume would be similar with the pavlik. The DB has a bar across the back, but because bub faces in that was no problem and the leg cuffs didn't cause any issues digging into me at all. We didn't have a pram so used the hug a bub all the time till about 10 weeks when decided she was too heavy to only use the sling. Now DD is bigger she goes in an Ergo great because she is used to having her legs splayed!!

All those at the RCH MEl - we see Prue too and have found her to be lovely, did see someone else while she was away who was also good. Used to see Rod in Orthotics but he is now on long service leave.

Corelly good luck for Monday. We are back on 22nd for an X-Ray after having the brace off totally since mid Nov - we were warned chance could go back on but am hoping not, would be really weird to have to get back used to it again even if just at night. We kept the old one to show CJ when older, she actually used to smile when we put it on because we used to sing a song "Good day Mr Brace how are you" something along those lines.

[Jesska]

Hi all, sorry I have been MIA the past weeks... just been a bit busy with christmas coming up ever so fast, and so many doctors appointments with my 3 kids. i tell ya what, boys are a handful... yesterday my oldest boy jack put our cat in the washing machine and turned it on! luckily i walked in just after and saw the cat going round and round (the water didnt go in for some unknown reason but lucky it didnt!!) then today my youngest boy ben, hit his brother in the face for using his pillow and blanket, and gave his big brother a big black eye) was fun walking down the street today with Jack having a black eye. A few of my friends stopped me and asked what happened, and they had a big of a giggle when i told them that his little brother did it to him eek...

Lahni is doing so well in her new brace, she is so happy (she always has been) but she is a lot happier now... esp at nappy chances and bath times!! she kicks her little legs with delight, and she laughed a few times we go for her next ultrasound on the 6th of Jan, and then we see her doctor straight after, I am so hoping she gets out of the brace then. Because if things haven't improved for her left hip (it only had 47.6% coverage) she'll have to go back into the pavlik harness... i know it will be for the best but i just dont like the pavlik harness.. i got so many stares, and whispers when she was in it.. even got asked how i broke her legs.... im enjoying this brace cos people usually know its because of her hips.. not that i broke her legs like the pavlik harness does.

crosswig - i had DD in a snugly when i think she was 3 weeks old (i asked her doctor before i got it) and he said its fine to have her in it... as long as her legs are apart it doesn't matter, and she was in the pavlik harness.

Corelly - sorry you went through a hard time... heres hoping for fantastic news on Monday, I'll be thinking about you... just like everyone else in the awesome group

chazanlow - goodluck for your appointment on tuesday... i agree with what wiggs suggested and bring a support person with you... its really hard seeing your lil one go into the brace/harness (which ever), i cried my eyes out when my DD was getting put into it... but it gets easier, and you don't seem to notice it after a while. It took my a good 24 hours to come to terms with it. But will be thinking of you, let us know how you go

MummyNaomi - Good work with your handy work with your DS's carseat hehe, i had a lil bit of a giggle when i read about the saw to the carseat hehehe. thanks for that.

Dee99 - Thankyou for sharing your journey with us, its good to know that after treatment as a bub everything works out for them