Hip Diplaysia Support Group #3

[bridee]

Hi All,

We had good news today, Georgie can come out of the harness for all but the night sleep and at Xmas we can stop altogether. We were hoping this was going to happen but never wanted to get our hopes up to much. I was a skeptical after the ultrasound, the report said her left hip was normal with 70% coverage and right mild displacia and 70% coverage. Given it was the same coverage but 1 classed as mild I didn't know if she was going to be able to come out but the Dr said he deemed them normal and we would just gradually wean her of the harness with night us only. So very exciting. She has just gone to sleep without the harness on, she was kicking her legs all over the place and moving up in the cot, annoying since I want her to sleep but I'm not complaining I loved looking at her discover her new freedom.

[BubbaGirl]

Hi Ingrid,

Summer had shorter more frequent feeds and I found too much solids filled her from wanting her milk. It is a bit of trial and error but you may find this the case for most of the time she's in the spica. Summer is only now (1st week out of spica) taking longer b/feeds. Try adding some prune juice to breakfast meals. Jasmin will probably get more constipated with less exercise and ability to pass wind. Just make sure you line the nappy/pad all around the inside to help stop leaks if it ends up being a runny one. Will most definatley have a strange odour. Take nappy off and put on her tummy so she can move a bit to help get things going.

All the best, Karen

[nicoli]

Hi all

We go to have an ultrasound and to the orth surgeon ext Tuesday. Scarlett will have been in her harness for 5 weeks then. I am keeping my fingers crossed that there is some progress and I might be able to take the harness of for baths. Her harness is getting so dirty and horrible.

Here she is looking cheeky as usual:



Nicole

[KVintersten]

Hi everyone,

you all seem to be so nice and knowledgable - would you mind me joining you? Well, actually I hope I will not have to join, but things don't look too good, and I am so scared and worried that I don't know what to do.
Our little Emily is 4.5 months old (will be 5 on the 27th) and her pediatrician just referred us for an ultrasound of her hips because of uneven skin folds on her thigh. She said that this is not always a sign of hip dysplasia, but better check it up. She could not find any "clicking" in her hips. She was checked at 1 week, and then every month untli now, and nothing worrysome was detected.
Anyone have any experience like ours? How did it work out for you? How worried should I be? How high is the risk that she has a problem? Oh I have so many questions, and now that Christmas is coming up, I will have to wait so long to find out. Our appointment for the ultrasound isn't until January 18! At that time, she will be almost 6 months old, and as far as I have understood from what I have read, that is a critical cut-off time for a harness to work.
I would be so grateful for any experience you might want to share with me.

Kristina

[nicoli]

Hi all

We had Scarlett's ultrasound today and saw the Orthopaedic Surgeon. Her hip is getting better already. Her right hip has gone from 17% to 50% in 5 weeks and her left hip from 59% to 69%! How amazing what the body can do.

We gave her her first bath in 5 weeks tonight! She kicked around but her legs still stay out to the sides. I guess it will take some time after she gets the harness off for good to get back to normal. She feels so light and fragile without it on too.

Anyway our Orthopaedic Surgeon has referred us to the Hip Clinic at Westmead Children's Hospital as he is not a paediatric specialist. I am quite glad about that as they are supposed to be great there.

Kristina - you are most welcome. I got great support from these guys when Scarlett was diagnosed and I was so devastated. Scarlett was referred to have an ultrasound after the community nurse noticed uneven skin folds too. Her hips were not dislocated but her socket was very shallow on one side. I wasn't expecting bad news as the doctor said it would probably be nothing, so I was really upset when I found out. Are you sure you can't get in for an ultrasound sooner? That is quite a qhite to wait isn't it? Scarlett was 3 months when diagnosed so I am not too sure about what options there are for older babies. Scarlett will most likely be in her harness for 3 months or more. Anyway I hope all goes well.

Hope everyone has a wonderful christmas and new year...

Nicole

Nicole

[ingrid]

Hi Kristina,

Dont want to scare you in anyway, but your case sounds a little similar to ours. Our little girl will be 8 months on the 27th. She had all the regular tests in hospital and by her pediatrician and nothing showed up. A lady at her childcare noticed the uneven skin folds when she was about 6 months (and also one leg slightly longer than another, which is another sign to look for). After going to the GP who said she didnt think it was anything but still referring us for an ultrasound, we went to the ultrasound only to have an x-ray done to find out she had a dysplastic hip (not dislocated just the hip not forming properly). Within a week of this lady approaching us at childcare (we are very grateful to her) we had seen an orthopedic surgeon. Jasmin is now into her 3rd week in a hip spica (and apart from the first 5 days is coping brilliantly). She will be in the spica for 6 weeks total and then in a Denis Browne Brace for 6 months.
I now it sounds terrible and hopefully there is nothing to worry about with your daughter but just know that babies are much better at adapting than us adults and it is better to catch it now and undergo a bit of 'suffering' than find it later when many more problems could occur.
I would also be pushing for an earlier ultrasound just to ease your mind. Most Benson Radiology places around here at least can fit you in within a week.
Good luck and hope ti all goes well.

Ingrid

[KVintersten]

Thank you Ingrid,

I did just as you said, tried to get an earlier ultrasound because I feel like I am going mad with worry. We got an appointment for Thursday morning, this way we will know for sure before the holidays. I live in Canada, but I think the system is pretty much the same here as in Australia. It is not easy to get an appointment to a specialist, but in cases like this they seems to be very nice and accomodating (thank heavens for that!).
I have tried to look for uneven length of the legs, but I can not see at least anything significant. Now that I look more carefully though, I can see that she clearly is using her right and left legs differently. She always turns over using her right leg, and when she is kicking around, she kicks more vigorously with right.
I guess I just need some fingers crossed on Thursday.
Poor little Jasmin, has she really got used to the cast? It seems almost impossible to me. How do you manage to get her around? I can not imagine that my Emily would fit into her stroller with a harness or cast.

Kristina

[nicoli]

Hi guys,
We had Scarlett's ultrasound yesterday and saw the Orthopaedic Surgeon. Her hip is getting better already. Her right hip has gone from 17% to 50% and the left from 59% - 69%!

We gave her her first bath in 5 weeks last night! She kicked around but her legs still stay out to the sides. I guess it will take some time after she gets the harness off for good to get back to normal. She feels so light and fragile without it on too. Anyway the Orthopaedic Surgeon has now referred us to the Hip Clinic at Westmead Children's Hospital.

Kristina - we had the same thing also. Uneven skin folds and told that it was probably nothing as her hips were not clicky. We luckily found out at 3 months and she was able to go into a pavlik harness. I would also request an ultrasound sooner. My GP called the specialist once the results were in and he fit us in the same day as a priority. And time is of the essence with these things.

Anyway I hope everyone has a great christmas and I'll see you in the new year.

Nicole & Scarlett

[Suezt]

Hi Kristina. I too had a very similar experience. Sophie was 1st recongnised to have different skin folds and a leg shorter than the other at 4 months by our maternal nurse. She too had no clicky hips. We were then referred to our local GP and then a Orthopaedic Surgeon. I just wanted to give you some light at the end of the tunnel. It doesn't mean that your little girl will need to go into a spica cast - she may only need a brace. Sophie went into a Rhino brace and had to be in it 18-20 hours a day - giving her 4+ hours free time. Plus the brace allows the child to move a bit more. She was in the brace from 8mths of age - 15 mths (7 months altogether). She is now brace free since 3 weeks ago! They adapt so well to the braces - the 1st week is the hardest (more for mum! and sleeping!) - but they really are little troopers and the brace becomes apart of your everyday life. In fact it was a bit hard giving it up recently

Good luck Kristina. Hugs to you.
Susan
Hip Kids Australia - Braces - Rhino Cruiser ( a website that maybe helpful)
xxxx

[KylieCL]

Hello All,

Just hopping on here to let you know i am still around. I Hope you all have a safe and Merry christmas with or special babies. Little Zali is now crawling despite having to wear the brace at night which is a pain with the christmas tree up! We go back to the orthapaedic sur. on the 8th of Jan. Fingers crossed there will be no more brace!!

Take care and all the best for the new year.

xox

[ZigZag]

Haven't been on here for ages...thought I might just pop my head in.

Hey Suzet -great to read Sophie is out of the brace - I bet she's really close to walking. It's so great when you don't have to think about it anymore. Did you keep it?

Well I'm starting to get nervous already. My DD (spica cast 7mths to 10mths, rhino brace 10mths to 18mths) is having a check-up in April (she will be 3yrs then). Our surgeon at Westmead still hadn't ruled out surgery for the future so we're hoping this next visit will be the 'final' visit of her overall treatment and not a ....'no, I'm still not happy with the lack of growth' talk. Anyway, she's going great and all looks to be fine, I'm sure it'll be positive.

[nicoli]

Hi guys - I need some advice - we are now allowed to take Scarlett's hareness off for baths and the physio suggested every second day and letting her stay out of it for hour so she can play. As we can't get in to see the Hip Slinic at Westemad childrens hospital until the end of January, I'm a little bit worried what to do when she's out of the harness. Is there anything I shouldn't let her do? Is it OK to put her on her tummy without it on? And what about rolling over? I just don't want to undo any of te progress she has made.

Kristina - how did you go on Thursday? I hope it all went well.

Nicole

[minimatron]

Hey Nicole, Well done on Scarlett having her harness off for some time during the day. I remember when Olivia was allowed to do it....it was so amazing. Loads of tummy time is good. I just let Olivia play on the floor, practice rolling. Just dont push her legs together (am sure you know that), but if she does it herself then its fine. Enjoy her harness free time.
Olivia has been harness free for almost a month. Her sitting is great, she can now sit from lying on her tummy and shes rolling and almost crawling. Her legs still are a little bit apart, but not as much as before. Her head is not as flat either, phew. If I have another bub with DDH (crossing fingers I dont) there is one thing i will do and that is make sure they are sitting up on pillows or bean bags. livys head was so flat there for a while and the suggestion of a helmet came up a few times.
All the best to you for Christmas and have a safe and happy new year.
Love Melissa

[hellokitty876]

My 10 month old daughter Savannah just had CR surgery, and is now in her pink spica cast. We are looking at 6 weeks in the cast, and then she will have to wear a brace 24/7 except for baths until she's 18 months. At that point, there is a 60-75% chance she will need an OR surgery to fix her left socket. I hope it fixes itself so we don't have to have the surgery. This is the hardest thing I've ever done. [link edited please read forum guidelines]

Hope to get to know everybody soon!

[LauraK]

Dear All,

We were told at a routine 6 week check that our son, Harrison had a clicky / dysplastic right hip, and saw the paed last Friday. 2 days ago we saw the Orthapedic surgeon who confirmed the condition, but explained it was in both hips. He immediately put Harry in a hip abduction brace, and now almost 3 days on he is very distressed, feeding is difficult, sleeping is difficult, his clothes are no good, and friends and family insist that we should be happy that he does not have somtheing more serious - we arent asking for their sympathy but at the moment this sort of talk is no help to us.

I've searched the web and found this thread, and having now read your stories I understand that many more people are going through or have been through what we are. Having suffered with this condition myself as a child, spending almost 18 months in a combination of spica casts and braces I thought I would know naturally what he's feeling and going through, but this is not the case; we just feel helpless and so cruel to our baby boy who at 9 weeks has had little life experience, and know the next 9 weeks and possibly more are not going to be easy for him.

Any advice whatsoever would be very much appreciated to help us make his life in brace as comfortable, enjoyable and as tear free as possible. One thing I am struggling with is how some of you have managed to endure months of your baby in brace and stay positive; 2 days down the line I am very angry and very bitter that my baby is having to go throug this.

Thanks for your time; looking forward to reading any advice or comments.
Laura x

[nicoli]

Laura - we all know exactly how you feel and even though you can't believe it right now - things will get better really quickly. My daughter Scarlett has been in a pavlic harness for almost 7 weeks now and at first I thought we would never survive it. She was 3 months old at the time so she had already become used to kicking around and had started to roll over. Putting her in the harness was heatbreaking as she was so distressed for the first few days. People now can't believe what a happy little thing she is smiling away at everyone. We have at least another 5 weeks (but maybe longer) in the harness and I look forward to getting her out of her dirty stinky harness! We put a jumpsuit undernieth the harness so it doesn't rub on her skin too much and it also absorbs sweat. After 5 weeks we were allowed to take the harness off every second day for a bath. I know you feel like things will never get better but they will.

An update on Scarlett - we are going to see Dr Little at Westmead Children's Hospital on January 8 so we will hopefully find out more about her progress and have a better indication of how long she will be in the harness for. I'll keep you all posted.

Nicole

[LauraK]

Hi Nicole

Thanks very much, it really helps to talk to people who are going through the same thing because up until now we felt as if it was only us! Everyone seems to know someone who has been through this yet we couldn't manage to speak to anyone as it's always a friend of a friend! We can take Harrisons brace off to change his nappy and to bath him but we almost feel as if this is cruel as he is reminded of what its like without it on but I'm sure wearing it full time is much worse.

I hope everything goes well for Scarlett on the 8th Jan, we are waiting for our first ultrasound scan appointment to come through and hopefully should know more then (I don't know about your health service but things have moved very quickly for us which is great and very rare for the British National Health Service!).

The hospital told us not to put any clothes under his brace but we might ask the question at our next appointment as his little legs are getting really red and I wonder if this is making him upset sometimes. At the moment we are just covering his legs with vasaline before putting his brace on and then trying to fit him into dungarees as thats the only thing we can fit over his brace (Winter here is so cold otherwise we would leave his legs exposed!).

I've read the thread back to 2005 and it's really encouraging to see the mums progress from where we are now to eventually getting the babys brace off - although to us this seems a million miles away it helps to read other peoples stories and to talk to people who are going through similar things at the same time.

Thanks again Nicole, best of luck to everyone, keep us posted.

Laura xx

[Rachelle]

Hello ladies!

I am sorry it's been so long since I posted, but things have been super busy with the holidays as I am sure you can all understand. I hope all of you and your babies are well!

Taylor is now approaching the 3 month mark since her spica cast was put on! It's hard to believe but it's gone by relatively quick. I have especially been suprised that she has done so well given her age. If you all remember she had it put on she was almost 19 months old! Good News: The cast comes off this coming Wednesday, January 2nd!!! Only 3 more days and I am very excited. Although she will be in a brace for 1 year, it will be good to be able to remove it for that 1 hour a day for baths and diapering if needed. I can't figure out what the name of the brace is but it's an abductor brace made for older babies and toddlers. Anyway, when we went in for Taylor's last cast change on November 22nd, the orthopedic surgeon said that she will wear the brace 23 hours per day for the first three months and then, his hope is that she will only have to wear it at night for the next 9 months following! I am trying not to get my hopes up, but this is the first time that I actually feel as though I can see light at the end of this journey!

How is everyone else?

MELISSA- How is Olivia doing?

NICOLE- Good luck for your appt. on January 8th! I'll be thinking about the both of you!

KRISTINA- How did Emily's Ultrasound go? I hope you received some good news!

KYLIE- Good luck with Zali's appt. on January 8th!!!

SUSAN- How is Sophie doing? I am sure you are very happy to have her brace free!

HELLOKITTY- I can totally relate to the ordeal of the spica cast. I hope you are doing okay with Savannah and let me know if you have any questions now that I am almost to the end of our 3 months with Taylor having one!

LAURA- I am so sorry to hear about your little Harrison. A lot of people had a difficult time understanding how hard it is emotionally. I acutally had people say things like, "oh, well my friends son was in a body cast and it wasn't that bad" or " well, at least it's not cancer". Well, for me in the beginning I knew that she wasn't going to die but I felt as if it was so horrible and like a piece of Taylor's childhood was being taken from her. It's okay to feel the way you do. Even almost 3 month into my daughter being in a spica cast, I still have my moments where it makes me sad. It's okay to feel that way sometimes! But, on the other hand it does get so much easier and if they take care of it now, hopefully your little guy won't have any need for future surgeries! Taylor was not diagnosed until she is 18months old and the treatment for her is a lot longer and the prognosis not as good. But, looking back I don't think I could have handled it when she was a newborn. I was a first time single mom who was sleep deprived and it would have been too much stress for me! Anyway, feel free to vent on this forum and ask questions. The ladies here are great and are here for you!

Has anyone had any trouble taking the brace off for an hour and then putting their babies back in? I was just wondering if Taylor is likely to be upset by having to put it back on after being out of it? Also, I was wondering if anyone thinks she will be able to sit in her normal car seat with the brace on. Right now we are renting a Britax Hippo Car Seat and it's not very well designed! Although I love my Britax Roundabout!

Alright ladies. Well I am going to sign off. I'll keep you posted after Taylor's cast comes off on Wednesday!!!

Below is the link for myspace page. There are plenty of pics on there of Taylor of course!

Take Care, Rachelle

http://www.myspace.com/rachelleandtaylor