Hip Diplaysia Support Group #3

[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

[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

[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

[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

[Kartier]

Hi Laura,
I was concerned about Chloe's development such as crawling and rolling as she was placed in her harness at 3-4 months old. Now at 8 months old and still in her harness she is rolling, moving backwards and pulling herself up to a sitting position. She is allowed 2 hours a day out of her harness and during that time she is standing up (with help) and rocking on her knees. I believe that she is on track with her development even though she was in the harness for the last 4 months. Chloe broke out in a rash from her first harness, the Pavlik Harness but we ended up getting some cotton material and placing it in the harness boots and under the straps. We now have her in the Rhino Harness which goes on over her clothes, she seems happier now.
Good luck for Monday's appoitment.
Hope everyone had a great Christmas and New Year.
Kartier

[nicoli]

Hi all
We go to the new orth srgeon tomorrow. Wish us luck. The last doctor referred us on becasue he thought she might need 'exptended' management which he couldn't provide. Ayway all we can do is hope for the best but expect the worst. I'll let you know how things go...
Nicole

[MistyFying]

Nicole I hope all goes well tomorrow

[nicoli]

So the news was not good but so far I am OK. We were told that Scarlett is getting to big for the pavlik harness and that she will be put in a dennis brown brace this Thursday. The upsetting part was that the doctor thinks she will require some kind of bracing until she is at least 1! I guess I had prepared for bad news but not quite like this. A few extra months I could have dealt with but this means 7 more month at least.

Has anyone else had experince moving from a pavlik to dennis brown? Does anyone have photos of what it looks like? Is it harder to fit into carseats/prams than the pavlik?

I hope she is OK becasue we are going away on holidays the day after and I don't want her to be miserable. I am trying to look on the bright side of things and think that at least she won't have straps around her lower legs or shoulders any more.

Oh well it looks like we are in this for a longer haul than first expected and I guess things could be worse but it is still a little bit of a blow.

Wish us luck for Thursday...

Nicole

[Rachelle]

Hi Nicole,

I am so sorry to hear that Scarlett's appt. did not go as well as you had hoped it would! I know it must be hard for you, but I am sure Scarlett will adapt to the change in braces just fine. I actually don't have experience with either brace. My daughter Taylor just went from a Spica Cast to a Hip abduction brace. She is now almost 22 months old and has been receiving treatment since 18 months old. So, only 5 days into her brace she is sitting up, rolling over, and has re-learned crawling, even in her brace. I was amazed at how quick she adapted to it! I know I haven't had any problems with Taylor fitting into her carseat now that she is in a brace. We have a Britax Roundabout which is fairly narrow, but Taylor's brace is flexible enough that she fits in it (and her stroller too). I don't know what the Dennis Brown Brace is compared to Taylor's, but I hope this helps. Taylor will be in her brace until she is almost 3 years old (due to her late diagnosis), but we are hoping that only these first three months will be 23 hours per day and then after that she can go to nighttime wear only (again, that's what we are hoping for). That means that once she is 2 years old, she will hopefully be able to go without the brace during the day!

I wish you all the best and hope this information helps some!!



LAURA- How did Harrison's scan go??? I hope well!




Rachelle

[LauraK]

Hi everyone,

Harrisons scan on Monday didn't go too well. Although the first diagnosis was wrong, its not both hips and it is only limited to his right hip - which is good news - unfortunatley the right hip is classified as a graf 4 which we are told is as bad as it can get. Because of the conflicting information and this eventual conclusion we made some angry demands to our health trust and managed to see the consultant today at short notice. He was really positive and has kept Harrison in his Aberdeen brace which we are happy about - although my husband is concerned that this will not do the job as his leg does not seem as abducted as it was in his previous brace.
We know that in Australia and the US it seems common practice to put babies in a pavlik harness but in the UK they seem really reluctant to do this, does anyone know why - it's not that we want Harrison to be in any more discomfort but we dont want to be told in 6 months that his hip has not formed correctly and he should have been put in a pavlik from day one. We were also really angry to find out that due to the family history he should have been in the brace from two days old yet they have let us down and he didn't start treatment until 9 weeks old.
Anyway, we were pleased with the way things went today, the consultant wants to see us in 5 weeks time and then again when Harrison is 20 weeks old to do an x ray. We are just hoping that for such a severe diagnosis the treatment is sufficient.

Nicole - really sorry to hear that things didnt go as you had hoped, I just wish I had some words of wisdom, we all know what it feels like to have change, set back and dissapointment. All the very best of luck for tomorrow and I'm sure you will let us know how things go. Hope you have a great holiday, you will all be ready for it!

Laura xx

[Suezt]

Laura and Nicole big hugs - my thoughts are with you.

Nicole - are you able to do a google search to have a look at photos. I suppose you already have it now and are on holidays - I hope everything is going well. Sorry the news wasn't that good - it always sux when you leave the OS with the news you don't expect. Sophie was in the (rhino) brace til she was 15mths (7mths total) and the OS said on our last appointment when she had her brace removed that she will only take 3 weeks - 3 months to catch up to her peers. The first week after the brace came off she started pulling herself up and now within the month she's cruising the furniture. Like Rachelle said with Taylor - even with Sophie in the brace she was sitting up, bum scooting, rolling etc - so don't let it worry you about Scarlett's development because they are such amazing little babies and adapt so incredibly. Sophie just amazes us each day with the new challenges she tries to discover. Again - hugs to you.

Laura - I was nearly in tears reading about Harrison. I'm glad you pushed ahead and finally got the answers and the correct medical attention that your baby deserves. Are you able to have an xray in 5 weeks also to see if the brace is doing what it should just for peace of mind? With Sophie they actually waited 4 months (from 4mths of age til 8mths) to see if the hip would correct itself on its on (which often it does) - I'm sure with Harrison being in the brace from 9 weeks he'll be on the mend in no time. Hugs again to you as well.

Hope all you other lovely ladies are doing well and also the bubs.
love
Susan
xxxx

[KylieCL]

Hello Lovely ladies!

Well i have great news concering Zali- she is now Brace Free!!

She started to crawl on Christmas day and then within her first 24hrs of being completly brace free she pulled herself up to stand. I am one very very proud mummy!

Laura- I hope little Harrison is doing well today. It's good to hear that only one hip is affected. We are all here for you so please feel free to share your journey with us.

Nicoli- Sorry to hear that Scarlett will be in her brace for another 7 months. I can only imagine how disspaointing that news would have been. As Susan said, i'm sure that she will catch right up in development.

Rachelle- I'm glad to hear that Taylor is out of her cast and is now moving about. Did she adapt well?

Bridee- did you get georgie's hip checked? I hope to hear some good news and that the clicking wasnt anything to be concerned about.

Melissa- It's good to hear that Olivia is crawling. I bet you have your hands full now!!

Kartier- How is Chloe going? Is she crawling yet? she sounded pretty close. Hope shes doing well!

Have a great weekend everyone!!

[nicoli]

Hi all

Thanks for your kind words. I know Scarlett will catch up and it really helps hearing all your stories. I know that when the time comes Scarlett will be off and racing too!

We had the new brace fitted yesterday and she has been an absolute angel! We had another appointment after it and she didn't mind being dragged around the shops for a few hours either. She has been sleeping/eating etc as before. I guess even though her legs are in a different position it is the restirction that she is used to now so she has handled it well. She can sit up alot easier in this brace as her legs are straigh instead of bent at the knees.

It is a little harder to fit her into the car seat and pram. I am also starting to look for a high chair that she'll fit in becasue we will be starting solids soon!

Anyway thanks again guys...

Nicole

[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