Hip Dysplaysia Support Group

[crosswig]

Hello all,

Congratulations Bridee! You must be so happy with the improvement in your little one's hips and getting to take the DB bar off during the day. I too hope for such sensational improvement in DD2's hips the next time we see the paed.

Welcome to the forum Jess. I'm sorry to hear about your little one. It is good that the diagnosis has come so early and it getting sorted out now.

Naomi, I'm glad that they are giving the hips a chance to mature before intervention. It sounds like you've been given some good information and if your son does ends up in a brace you'll be in a position of strenth being fully informed about what is going on.

We are now six weeks into our initial twelve week stint in the pavlik harness. I do hope that the next six weeks go as quickly as the first. I'm pretty sure I'm going to have the jitters quite badly before our next appointment as I'm starting to get them already. Silly as it such a long way away.

DD2 has tried her very best over the last week to roll. I had been a little worried but the physio assured me today that that is OK and she can't hurt her hips.

Crosswig

[crosswig]

Welcome VPM. It is a very confusing time isn't it when you start on this journey? I found the wait between diagnosis, ultrasound and starting treatment the hardest bit. Especially when you have a bit of a wait between diagnosis and seeing your specialist.

I don't know if I have any good advice about the wait until you see the specialist and if that will mean longer or more invasive treatment. Who are you going to see? Maybe the other members will be able to give you some guidance as to their experiences if you share the specialist (Moderator - if we all play nice is this within the guidelines of this forum?) I guess it is somewhat reassuring that the wait is a considered position on the specialist's part.

Definitely enjoy the time until you (possibly) have the brace fitted. I find that I miss baths most of all.

Crosswig

[Jesska]

Hi everyone.
Well we had our paeds appointment and he is really happy with the way her hips are going. They are in the socket and stable which is fantastic. He also said instead of 12 weeks being in the stint it will be 13-14 weeks?? not sure why, cos he seems to think everything is coming along great.... we have her ultrasound on the 23rd of this month. So kinda nervous about that, hopefully everything is looking good... what should i ask the person that does the ultrasound?? any advice/tips from you girls would be great.
The doc however did say that those 13-14 weeks she wont be in the pavlik harness all that time, she'll be in another brace... but yeah I was kinda disapointed when he said she'll be in it for the full 12 weeks maybe longer. We see our paeds the afternoon of the ultrasound. Does the ultrasound hurt the babies?? Im getting my DH to come with me and not go to work in the morning, dont think i can do it on my own. and esp if i have to bring the boys, they are so full on!! well i hope everyone elses bubs are coming along great. cyas

[bridee]

Jesska - pleased things went well at the paeds. The ultrasound doesn't hurt but they can protest about it - DD2 had 3 ultrasounds throughout her treatment. The 1st one she screammed the whole time and in the end I was breastfeeding her as they scanned to keep her calm but she did have to have a kidney ultrasound prior to the hips so it was a big event for her when she was only 6wks. The 2nd scan she cried a bit but not much and 3rd scan she just didn't care didn't say a thing.

At the scan the major thing you want to know is what the coverage % is, you are hoping for something around 60%. They may not be able to tell you that until they actually go to write the report but they should be able to tell you roughly.

We were always lucky that the radiographer ended up doing DD2 scans rather than the sonographer. We didn't request it it just happended DD2 put on enough of a performance the sonographers weren't confident in getting good pictures and the 3rd scan the sonographer had just no idea on how to scan with DB bar on. The radiographer is always going to be able to tell you more.

[wiggs]

Newbie in need of some advice

Hi everyone, I am new here and although I have been reading lots on the belly belly forums this is my very first post. So apologies if things are not quite right.

Anyway today I took my DD Chloe for her 6 month maternal and child health check up. My nurse found that her skin folds on her thighs and buttocks do not match and that her left knee is lower than her right. She has advised me to take her to my GP who will then order an ultrasound. I'm just freaking out a little as at 2 weeks the other health nurse thought she detected a clikcy hip on that same left side but then when I went back at 4 weeks to see my now regular health nurse she couldn't hear it and advised that it had prob. corrected itself. My GP also never said anything about it at the 6 week check.

Just worried that it has gone too long and a she is 6 months will need more agressive treatment. She is such a cruisy and happy baby I feel so sad at the prospect of her being in a cast. I also have a 2.5 year old boy that has never had any probs. he was crawling at 6 months - she has only rolled once and my DH and I have been laughing that he had to crawl to get places whereas all the action just comes to her. Feel like I should have noticed this earlier.

Anyway just having a sook, guess I am a bit shocked. Can anyone advise me on what generally happens if one hip is out in an older baby. I know you can't give me medical advice but I just have no idea what to expect.

Thanks

[bridee]

Wiggs - I can't really help you with what happens with older babies as both mine were picked up early (6weeks and 12weeks) but just wanted to say good luck and while things seem scary now don't get too far ahead of your self - uneven skin folds doesn't necessarily mean hip problems some babies can just have uneven skin folds. In saying all of that I would be getting it checked quickly so if treatment is needed it is not delayed.

Just wanted to say good luck. Someone on here will certainly be able to help you.

[Hera's Dad]

Hello everyone. I got the news today I've been dreading. My little girl is 9 months old and on the verge of Walking. Now she's going to be put in spica cast and be imobilized for the next 3 months. I'm of course devistated but am not entirely surprized. In fact I'm furious at my doctor because it took until now to find it. I understand things can be missed but in this case I noticed the "POP" in her hip almost 4 and a half months ago and I told her doctor of that but he said she was very "strong" and nothing was wrong! I felt something was wrong but he assured me she was strong in her legs. My problem is that if a parent says they felt a "pop" in their daughters legs he (the doctor) should take that seriously considering what a pop means.
I also understand I'm in the blaming stage right now but if this could've been worked out earlier it wouldn't be screwing up her walking as much.
Even the doctor who is going to do the surgery stated that it's rare for her to see children this old having to have the surgery as it's caught much sooner. Which I responded "I did catch this Much earlier!" but my doctor said it was fine.
So that's my rant, but I hope I can come here to get some tips on how to cope with this situation from those who've gone through this. Thank you in advance.
Leon "Hera's Dad"

[Corelly]

Hi everyone,

Hera's Dad - what another idiot of a doctor. The quicker they do mandatory ultrasounds at 6 weeks old, the better all our babies will be. You'll get a lot of advice here and ideas of what to do. The best bit I found was to get a beanbag for bub once the spica goes on and to look at loads of photos online of babies in spicas so that you're not so shocked when your baby comes out of surgery. Good luck.

Monday was our 12 week appointment, "After Spica". Originally we were told that the rhino cruiser brace could come off then, but da dum. Not this visit. DD's hips are growing and starting to shape correctly but not enough for her to come out of the brace.

She's really starting to feel this horrid Melbourne heat, even in a fully airconditioned house. I asked the surgeon if swimming was an option, and he said that was fine, and even to leave the brace off for a couple of hours if we do put her in a pool, but I feel so bad for her- after a b/f her head is soaked because she is just so hot, poor darling. We've got another appointment in four weeks so I've got every finger and toe crossed that the brace can come off, even if it is just during the day. She cries if I put shorts on her under the brace, she hates the feeling of the foam inserts on her legs and I know I'm not supposed to do it anyway, but had to try something.

I really feel for you guys out there at the moment with bubs in spicas when we're struggling in the brace, which I'm sure isn't half as bad.

Hope everyone is coping with all of this. I can loudly say that I CAN'T WAIT FOR ALL OF THIS TO BE OVER!!!!

Corelly

[Hera's Dad]

Originally Posted by Corelly

Hi everyone,

Hera's Dad - what another idiot of a doctor. The quicker they do mandatory ultrasounds at 6 weeks old, the better all our babies will be. You'll get a lot of advice here and ideas of what to do. The best bit I found was to get a beanbag for bub once the spica goes on and to look at loads of photos online of babies in spicas so that you're not so shocked when your baby comes out of surgery. Good luck.

Monday was our 12 week appointment, "After Spica". Originally we were told that the rhino cruiser brace could come off then, but da dum. Not this visit. DD's hips are growing and starting to shape correctly but not enough for her to come out of the brace.

She's really starting to feel this horrid Melbourne heat, even in a fully airconditioned house. I asked the surgeon if swimming was an option, and he said that was fine, and even to leave the brace off for a couple of hours if we do put her in a pool, but I feel so bad for her- after a b/f her head is soaked because she is just so hot, poor darling. We've got another appointment in four weeks so I've got every finger and toe crossed that the brace can come off, even if it is just during the day. She cries if I put shorts on her under the brace, she hates the feeling of the foam inserts on her legs and I know I'm not supposed to do it anyway, but had to try something.

I really feel for you guys out there at the moment with bubs in spicas when we're struggling in the brace, which I'm sure isn't half as bad.

Hope everyone is coping with all of this. I can loudly say that I CAN'T WAIT FOR ALL OF THIS TO BE OVER!!!!

Corelly

Thank you , I am going to do the bean bag, but how long does this help a baby that wants to roam around like nobody's buisenesss.

[Jesska]

bridee - thanks for all the info on the ultrasounds, means a lot. I don't really like going into things not knowing what to expect kinda thing, haha, strange I know. I'd rather know that she may scream her lungs out than going in there thinking she will be a perfect Little Angel.
I have made sure my hubby's boss lets him have the morning off, and my mother in law is going to look after the boys for us, thank god. I am really nervous of what the results are going to be though... Im just hoping for good news... obviously - well aren't we all. Just a quick question, does anyone know why babies get hip dysplaysia?? or is it something that just happens???

wiggs - sorry i dont really have any advice for you - as i am only new to this myself... but i hope everything works out for you and you DD at your appointment.

Hera's Dad - Omg if i were you i would be majorly ****ed off, i cant believe your doctor didn't take you seriously!!!! some doctors these days really annoy me!! they get paid to do a job, so they should bloody well do it properly. Sorry I don't have any advice for you either, as I haven't been through it. I hope your little girl adjusts to the Spica quickly and she isn't too uncomfortable.

Corelly - That sucks that your DD couldnt get taken out of the brace yet, how annoying for you. How old is your DD and how old was she when she was diagnosed with HD? Oh I know what you mean about bubs feeling the hot weather... my lil one is deff feeling it, so when we are home she is only in the pavlik harness and a nappy... I am also constantly putting wet face washes on her face and body to try to keep her cool. Oh how I wish i could just strip her off and give her a bath. But this is the best thing for her, and I shall do what my doctor has told me and not take her harness off, as hard as it is somedays. She is a very good baby though so I cant really complain.
What is the rhino brace?? is that the brace they go in after the pavlik?? My little girl has been in the pavlik since she was 2 weeks old, then at our 3rd appointment our doctor also put her in a brace, that went over her clothes. its plastic and looks like a nappy sorta.... I just cant for the lfe of me remember what he called the brace.
I hope at your appointment in 4 weeks time the brace can come off for good!!

Anyway Lahni is back to sleep should go before the boys wake up, Cya's.

PS Does anyone have facebook?

[Corelly]

Hi!

Hera's Dad - We found an adult sized beanbag to be better than a baby/child one - it's bigger so it fits better around bub. I don't know how you'll go with it because my DD still isn't mobile - has never been, so she's happy to sit in it for quite a while.

Jesska - DD went into the first brace when she was 7wks, in that for four weeks, one week brace free and then into surgery for the open reduction. It was then the spica for five weeks and now the rhino brace. She's now seven months old. The rhino cruiser wraps around her thighs and around her waist, it's plastic and foam, with velcro to hold it on and is so easy to work with. It goes on over clothes and comes off for every nappy change, baths and for an hour morning and afternoon. It's pretty flexible and kids that have already been walking or crawling can do both in it. From what you're describing, I think your bub must be in the rhino. I was watching DD this morning, trying to roll over in it - she got right up on her side and stayed there!

Corelly

[erybery]

Hi, my DD Ella is 6 weeks old and had an ultrasound last week to check her hips as the paed said she may have hip dysplasia when she was a day old also when we saw him again at 3 weeks.
We go back tomorrow to discuss results, though I picked up the scans and reports yesterday.

It says on the report: bilateral grade 2 acetabular dysplasia. it also says the right and left acetabular roof is shallow.
The left femoral head coverage measures 48% at rest and reduces to 38% when stressed.
The rightfemoral head coverage measures 44% at rest and reduces to 38% when stressed.

Does anyone know what this means? how bad is it? If she is gade 2 how many grades are there? will she need to be in a harness? etc.

I guess I will get some answers tomorrow at the paed, just so scared and sad for my little bub!

[nicoli]

Hi all

Just popped in to say hi as I haven't been on here for a while. Xavier had his second ultrasound (14 weeks old) this week and even though I haven't spoken to the paed yet the sonographer said it all looks good. He has 60% coverage in one hip and 'well above 60%' in the other. Good news for us.

To all the new forum member - welcome. I am sure that all of you will find great comfort in talking to the other parents going through similar situations as you on here. When my daughter was diagnosed at 3.5 months (now 2.5 years) I got so much support on here.

Erybery - I'm sure you will find out all about this tomorrow, but I think grade 2 is the second best grade if they have hip dysplasia. Grade 1 is the least severe. My daughter's 'bad' hip was only 17% coverage when she was first diagnosed and I believe that full coverage is somewhere around 70%. Good luck with her treatment. Since she is so young and it is not extreme, hopefully her it will be short and sweet!

Hera's dad - so sorry to hear your story. I hear it all the time. I am so lucky to have had a wonderful GP and community nurses who have always listened to my concerns. Hopefully Hera's treatment will be successful and the time will fly by. Once they come out of casts/braces they pick up where they left off and catch up so quickly. Hopefully Hera copes with not being mobile for that long. You might have to try to find other activities to amuse her and take her mind off things.

Take care everyone

Nicole

[bridee]

Erybery - my DD2 had coverage that was about 50% in both hips. Initially at the 6wks scan they said it could still correct itself and to rescan at 12weeks. Nothing had changed at 12wks so she went into a DB bar. After 6wks her coverage was 70% so with only mild dysplacia babies respond quickly to treatment.

[MummyNaomi]

Hi Everyone,

Eryberry, sorry to hear about your DD, hope that all went well at your Paed today and if treatment is needed it is brief

Leon - sorry to hear that your DD was diagnosed so late - I can understand your devastation, I hope you find some support in this forum, the others have been very helpful with info and support

Nicole - good to hear that Xaviers coverage is so good - congrats

Corelly - sorry to hear that the brace cant come off yet - and it must be so tough to deal with in this heat

Jesska - it must so so tempting to give Lahni a nice cool bath, how frustrating!!

Well this is the week we take Bailey back to the hospital then straight over to the orthopedic surgeon straight after and if his acetabular angle hasn't improved he will have to wear a brace, most likely a denis brown bar, so I have everything crossed for thursday so thats not the case. Bailey had an appt with a paedeatric physio on wednesday due to his gross motor skill delay and she confirmed he had poor tone, especially in arms, neck and back and when I told her about the dysplasia and possible bracing she said "You dont want that, it will further hinder his development" - NO SH#& SHERLOCK, of course we dont!! Sheesh, talk about stating the obvious.

Naomi

[nicoli]

Naomi - what an idiot that woman is to say that to you! Besides stating the obvious, if he needs treatment that is the most important thing and everything else will have to be put on hold. I will keep my fingers crossed for you this week. Let us know how you go.

Nicole

[erybery]

So the paed is sending us for another ultrasound in 4 weeks at the Childrens hospital. He said he wants to give it bit more time to see if there is any improvement as her hips aren't dislocatable or out of the sockets, they are just shallow. so now just have to wait.... I just really hope waiting doesnt make it worse!

[bridee]

Erybery - waiting won't make it worse given the hips aren't dislocated but make sure if nothing has changed in 4 weeks you get treatment because the quicker you seek treatment the quicker it will be over and fixed. We are proof of that and our cases seem similar.