Hip Diplaysia Support Group #3

[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

[Suezt]

First of all ... Laura - humungous hugs to you! The first week or 2 is extremely hard and it doesn't help the moods when both yourself and bub aren't getting enough sleep. It took my Sophie about a week and a half to get back to her sleeping routine - I had to get a bit tough in the end cause I was just so exhausted physically and emotionally and let her cry some of the nights out. Sophie was in a brace for 7 months (from the age of 8mths - 15) we've now been out of the brace for 1 month. I had the opposite recently where I was scared to get the brace off cause we'd grown so accustomed to it

It does get better and you're right - it doesn't help that people around you say that you should feel good cause your baby doesn't have anything major wrong. That talk isn't fair at all. What you're feeling now is like a grieving process and you have every right to feel angry, robbed, hurt, teary etc. I think I spent the 1st 2 weeks sobbing my heart out. And angry at the unfairness of it all - when other 8 mth old were beginning the process of walking my little girl had to lie flat on her back and stare at the ceiling. She adapted so well - much better than her mummy and the brace just became a part of our everyday life! Feel free to chat and share and cry with us ... that's what we're here for. Hugs again!

Update on Sophie ... she is going extremely well without the brace. It's taken about 3 weeks or so to get back into a good sleep routine - but she's learnt how to roll again and that makes it easier for her to get unstuck in her cot now and she's enjoying her new found freedom! She's also started pulling herself up and cruising around the furniture - she started doing that within the week of the brace coming off! I was so amazed. Yesterday she started to let go for a second or so and is so proud of herself (as are we!).

Rachelle - how exciting that the cast is coming off! Yah! I hope the transition goes well. Sophie used to have 4 hours a day out of her brace and we did have a bit of a protest getting it back on but it wasn't too bad. All the best!

HAPPY NEW YEAR EVERYONE ... HOPE THAT 2008 IS A FANTASTIC YEAR FOR YOU ALL
love
Susan & Sophie
xxxx

[Kartier]

Hi all,
It has been awhile since my last post, I have been overseas. I have read all the news and wanted to say to Laura- It is hard to see your little one go through this but the other ladies are right, it does get better. Chloe was fitted to the Pavlik Harness at 4 months then at 6 months she was fitted to yet another brace call a Rhino brace and has been in this for almost 3 months. She has one hour off in the morning and evening. It is something that you go though the motions and say this is best for my baby. It does get better, I think it is a matter of taking each day as it comes. I think I cried for a week but then thought this will be a long process so I will make the best of it. Mind you I didnt think like that when she was first fitted to the harness. On the family/friend front- people didnt know about this conditon and would often just stand back and not say anything and do nothing at all. It was difficult emotionally for us as some of the comments were not helpful to us. As perviously mentioned.I also knew that Chloe was going to be fine in the end, just a little bump in the road for her but she would grow and be her happy little self, which she is to this day. I understand how you are feeling as do the other mums going through this-they are all so right, it will be alright. When Chloe was placed in her second harness I was so mad and upset over it, but I also knew that we were through the first stage of her recovery. Your little guy will adjust to the harness and learn how to move and be active in it. Chloe rolls and sits in her harness, which is great to see. Keep up the great work Laura, it will be o.k.

Suezt-Update on Sophie- Congrats on Sophie being brace free. Sounds like she is loving it.

Ladies- To all the wonderful mums, Wishing you all a Happy New Year.
Kartier and Chloe

[LauraK]

Rachelle,
Thanks so much for your advice; It sounds like Taylor is going through the same as me when I was a baby, my hip dysplasia was picked up at 14 months, with a combination of spica casts & metal braces for the next 18 months. I can not remember anything of it and whilst my parents were told I would need a hip replacement by the time I am 40, i've reached 27 and the hips are perfectly fine; and medical approach has developed so much I am sure, and hope that Taylor's only knowledge of this will be from photographs. Fingers crossed for Wednesday, we'll be thinking of you & look forward to hearing how it all goes.

If it is any help; Harrison is in a hip abduction brace now until his scan & 4 days in he really seems to have adjusted well with the times we take it off for nappy changes & bath time. Our problem is associating every time he cries with the discomfort of the brace and it is probably not the case!
We are able to get him in his car seat without any problems, but dont know if this is a good indicator for you as he is going to be a alot smaller than Taylor at only 9 weeks old.

Best of Luck for Wednesday I am sure it will be a special moment & a great start to the new year.

Laura x

[bridee]

Georgie has now been out of the Pavlik Harness during the day for 1 month and out of it altogether for 2 weeks (was on night use). At last Dr app we were told her hips was good enough to come out of the harness, the right hip was deemed still to have mild displacia however, with 70% coverage it was deemed stable and all that over time it would become normal. She does not need to see Dr until she is 1 (in another 7 months). For the past couple of weeks (probably since coming out of harness) we have noticed her right hip clicks. Not all the time it will do it once a few times a day - ie. after each sleep when she is playing it will click once. After some opinions - do you think I should be worried and ring Dr or do you think this is due to hip still having mild displacia. Dr didn't mention it would occur but he didn't really say anything apart from she can come out of the harness.

[Rachelle]

Hi Bridee,

I would definitely ring the doctor. I wouldn't walk to take the chance that your DD's hip is regressing any so I would call just to make sure still hearing her hip clicking is normal.

All the best,

Rachelle

[bridee]

Hi All,

Finally got to speak to our Dr about DD clicking hip. He said if it was just a sound then it is probably just a tendon moving. He said if we could feel it like the bone was moving making the sound then would be of concern (which we haven't been able to feel). He also said if she still had the same moved in the hip ie. hip could flex out so knee almost touching the surface she is lying on then he could see no reason for concern.

So hopefully it is nothing, my fear is we get to our next check up (in 6 months time) to find there is a problem but at this stage just have the trust all is good

[Kartier]

Hi everyone,
Some good news, we went to see the OS yesterday and Chloe can be out of the brace for 4 hours a day. It may sound like a little but for us it is great news as it means that her hips are starting to fix themselves. We are along way off being brace free at this stage but we are now one step towards that goal.
bridee- Good luck and best wishes for your DD
Nicole - I had the same problem when Chloe went from the Pavlik harness to the Rhino brace, I had to change my car seat and pram. In then end it was worth it as now she is comfortable and is happy. Not sure about the high chair as I ended feeding Chloe on the couch or floor to make her more comfortable, she seemed to like it like that.
KylieCL- Thanks for asking about Chloe, she is doing so well. She is allowed out of her brace for 4 hours a day. When she is out she is off rolling, rocking and on her knees. It is hard to see her go back into the brace after that time but we make her laugh and smile and it seems to work. Well done on DD being brace free. She didnt waste anytime and was up and moving already. I am so happy for you and DD. Keep me posted on how she is doing?
Laura- How is Harrison going?
To all the other mums, Hope you are all well
Kartier and Chloe

[minimatron]

Hey Dee,
I would call the doc as well...just to put your mind at rest. I remember that when Olivia came out of the harness during the day I heard it click for a few weeks, then it stoped all the sudden, but she remained in the harness for 16 weeks at night after that. Good luck and let us know the outcome.

Olivia is doing great. Its been a month now since she has been out of the harness completely and shes just started crawling.

Hope everyone is well

Love Melissa

[LauraK]

Hi everyone,

Just and update on Harrison. We took him to the hospital on Monday as the hip abduction brace he had was really rubbing his legs and he had broken out in a rash. They have changed his harness until he has his scan and he is now wearing an Aberdeen harness which is worn over his clothes and he seems much happier. We have had confirmation that his scan is on Monday so we hope that they wont try to put him back in the other harness as he was so upset and life was so difficult! However, if the consultant tells us that this is the best for him we will just have to get on with it and do whatever is best for Harrison. So fingers crossed we will know more on Monday.

Hi Kartier - it's great to hear that Chloe is able to sit and roll in her harness, we have been so worried that the harness will stop Harrison from developing in the way that other children do, we just don't want him to miss out and want life to be as normal as possible for him.

Hi Susan - you must be so happy that Sophie is starting to walk around the furniture, it must be so fantastic to see and again it really helps us to hear this as it gives us hope.

I will let you all know how we get on with Harrisons scan on Monday, thanks again for all of your support!

Love Laura xxx