Hip Diplaysia Support Group #3

[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

[LauraK]

Hi Kartier
Harrison seems to be doing really well, he has adjusted so well to the brace. Last week the consultant said he would prefer us to put the brace under his clothes so we have now started to do this and when looking at him you can hardly see that he is wearing a brace! The only problem we have now is getting trousers to fit over the brace but we are starting to learn what he can and cant wear. Every now and then I think that things start to get to him as he seems to scream and cry for no apparant reason but overall he is being a little angel considering all that he is going through.
It must be fantastic for you to see Chloe out of her brace, we need to go back to the hospital when Harrison is 20 weeks at which point the consultant has said that he hopes to be able to tell us that we can wean Harrison out of the brace for a few hours each day. We really hope that this is the case as we are going on our first holiday with Harrry in May and it would be fantastic for him to be able to go in the swimming pool! It must be hard to see Chloe going back into the brace each day but hopefully she will start to get used to this and will adjust as well as I'm sure she has with everything else.

Hope everyone else is doing well.

Love Laura xxxx

[Haileys Mum]

Hi everyone,

My name is Jo and our baby girl is Hailey. She was 8 months old last week and we went to the paediatrician about her reflux. I asked about her hips while I was there, I have asked 2 different doctors and the mch nurse numerous times over the last 8 months as when she lays on her back for a nappy change she is unable to drop her knees outwards very far. They just kept saying she was ok, not to worry, first time mum, nurse, etc... Luckily I asked the paed. as it turns out after ultrasound and x-rays she both her hips are dislocated. As I'm sure you all know her dad and I both freaked out. She was put in a harness ( I think a pavlik???) and we were sent home, back to the paed. next week then off to the kids for an ortho. consult the week after. We can't take the harness off at all till then and I'm not sure what will happen after that. I have so many emotions but the worst thing is Hailey cries, hysterically, every time she wakes up. She used to sleepfrom 9-7 every night but now waking up frequently, hysterical. It takes an hour to settle her the she might sleep for an hour the it starts again. She is not a sooky baby at all and i find it so had to watch her suffer. I thought it was not painful for the babies?? She is sleeping on a lambswool as the buckles seem to dig in her back. Does anyone know anything that may help? Doyou think she will need plaster or what may happen. we were too uset on thursday to ask any questions.

Regards,
Jo

[LauraK]

Hi Jo
We all know exactly how you are feeling, this forum is really good and we have found it such a great help. Our little boy went into a harness on the 27th December when he was 8 weeks old and like Hailey he used to cry every hour during the night at first, it was as though every time he was trying to move his legs he was getting really upset and frustrated. We too found it so hard and would have given anything to take the pain and frustration away from our little boy, there is nothing anything can say that will help you to feel better at the minute but I promise it does get better and easier. Harrison is back to his normal self now and it's true what all the other mums say the kids really do adjust so well. The original harness gave Harrison a rash so they put him into an Aberdeen harness which is so much better and as soon as he went into this we saw a change. If Hailey really doesn't settle in the harness and you don't feel that she is adjusting then I think it is worth going back to the hospital and telling them this as this is what we did and they changed the harness.
Both of my hips were dislocated and this was discovered when I was 14 months old. Back in those days all kids went into a plaster so I had a plaster on for 6 weeks then different braces for another 18 months -I can't remember a thing and I'm absolutely fine now. This is what I keep telling myself about Harrison - he wont remember a thing and in the long run this is all for the best so that he doesn't have problems when he is older. Hopefully Hailey wont need a plaster, I think from what we have been told most babies react well to harnesses and only tend to need plaster casts following surgery - our consultant has said that Harrison will be reviewed when he is a year old and at this point we will find out if he needs surgery.

Best of luck with everything and as I said earlier this forum is great and everyone is such a great help so any questions you have are definitley worth asking as I'm sure someone will have come across the same questions before.

Take care,

Laura.

[sweetpea678]

hi nicole,

my youngest was in the dennis brown and i found that the only car seat she fitted in was called the safe n sound maxi rider and i got a high chair second hand that had no sides and tray folded over from the back, with the pram as she got bigger i brought a stoller and put a pillow behind when sitting up so her legs didn't hit the edges.

[Kartier]

Hi
Laura;
I am glad that Harrison is doing well with his harness. It takes a few hard days on you to adjust as well as Harrison but it is amazing how well babies cope with all that is going on and still
smile at you in the morning. Chloe went through a hard time at first but is such a trouper with all the changes to her harness and life. Chloe had her first harness on under her clothes, we just made sure she had something light on so she didnt get a chill. I always got pants that were one or two sizes bigger just to fit over her brace. I am so happy that she is allowed out of her brace for more than one hour a day she has just learnt to crawl and is powering from one side of the room to the other, all within 1 month of having her brace off for majority of the day. She still has to wear it for any sleeps including the night ones. It took Chloe about 8 weeks to be allowed out of her brace at all. She was then allowed 1 hour in the morning and 1 hour in the arvo. You will see a big change in Harrison when he is allowed out of the harness. It is hard to see her go back into the harness for her sleeps but I know that in my heart that she is near the end of her time in her harness and thats she is that one step ahead to being completely brace free. Let me know how Harrison goes with his appoitment.
Jo;
Wecome to the forum. I am sorry to hear about Hailey . I am glad you asked about her hips as my daughter Chloe clicky hips were not detected until she was 4 months old. Only after I insisted on her being checked out that they found that she had two bad hips and was placed in a Pavlik Harness within 12 hours of being seen. I had two doctors and two mothercrafe nurses look at her from birth to 4 months and say "she will grow out of it" , it was great that you looked into it. We were so upset when we found out as she was in her harness so fast and we didnt know what to say or do, but over time we learnt to cope and do what we could for Chloe and the situation. You are both justified in feeling the way you are as it is not easy to know that your child needs medical attention.We felt the same way as you are feeling now, so your not alone. Chloe was placed in a Pavlik Harness and was in it for over 2 months with no break, intense period but she was eventually allowed out of it for a short time then extended to a longer period. We learnt to manage and I know you will to. Chloe cried for the first week but she eventually calmed down and so will Hailey. It is hard to hear your baby cry in discomfort, all you can do is give her a hug and say that alls o.k, thats all I did with Chloe and it worked after awhile, just being close to you is the most important thing until she comes to terms with the harness. We had Chloe on the floor alot of the time for comfort, she seems to be o.k there. I also managed to breastfeed her with her harness on and burp her. Jo, it will be o.k-it may look like the world is on your sholders at the moment but it will get better and easier fo ryou and Hailey I promise you that as i have been there. Your Ortho Sur will take another xray at your appoitment and will tell you the best solution to help Hailey then you will know. In the meantime write down some questions that you want to know now that you can see what the harness looks like and what your concerns are. I walked into my 2nd appoitment with my ortho sur with 30 questions and made him answer all of them. They will answer all of them as they know what its like to see parents upset and confused. Hang in there Jo, you will be fine. We are all here to help. Let me know how she goes o.k. I check everyday so feel free to let it all out and chat.
Hugs
Kartier

[nicoli]

Hi ladies

Scarlett is still doing really well in her new brace. She is happy and contented most of the time but she has been waking more during the night than she did in her pavlik harness. I'm not sure if this is the hot weather we are having or what but she has been waking and demanding a feed sometimes twice during the night!

Jo - Scarlett was in a pavlik harness from 3 - 5 months old and is now in a dennis brown brace for an additional 7 months. Her hips were not dislocated but she had a very shallow socket on her right side. At first we were devastated, but once Scarlett got her smile back we knew everything would be OK. The first night Scarlett didn't sleep at all. As she drifted off to sleep she would wake up screaming. But gradually she got used to it and after a week you wouldn't even know she had it on. I know you can't believe it now but things will get better really quickly. Here are some photos of Scarlett in her pavlik harness:
http://users.tpg.com.au/nicoli/scarlett/frog.htm

Because we can put clothes over Scarlett's new brace you can barely even tell she has it on:
[URL="http://users.tpg.com.au/nicoli/scarlett/images/DSC02084.jpg[/URL]

We go back to the specialist on 19 Feb when we will also have an ultrasound. I am hoping she has made progress by then but I know not to expect too much.

Take care everyone.

Nicole

[minimatron]

Hi All and welcome to everyone who has joined the forum,,,good luck with your journey as hard as it is.
Well Olivia is 2 months harness free, shes crawling and cruising, getting into everything.
The reason I am posting is I just went to the nurse for her 10 month check up, who told me that kids with congenital problems are more intelligent, because its Gods way of compensating for it. Apparently thats why Olivia is very bored and needs so much stimulation....I found that very entertaining!!!
The issues I have now is that she stands on her toes and flexes her feet when sitting, so we need physio. Also because I left her on the floor when she was in her harness so much, shes got a flat head...its getting better now, but her head size is going off the scale...so we have to get a referral for the paed. Ahhh, this kid keeps me so busy. it just amazes me how quickly she has picked up stuff as soon as the harness came off. I wonder if she would be walking by now...thankfully she not. I am so tired, she tires me out. I just think I had it easy with her in restrait...IYKWIM!!!
The nurse checked her hips and the skin folds and everything is going along fine.
Good luck everyone and I hope yopu dont mind me popping in every now and then.
Take care
Love Melissa

[Haileys Mum]

Thankyou all for your support and suggestions.

Laura;

It's reassuring to hear that what Hailey is going through is temporary. Your right, we would give anything for this not to happening to Hailey. I am supposed to work tomorow so hopefully Hailey gets some sleep tonight.

Kartier;

Hailey was put straight into the harness, before we left the paed. It was so confronting and unexpected as we went in there about reflux! I was so shocked I didn't even ask any questions and all I really understood was that I can't take it off, at all. I have to see him again thurs so hopefully we can have some time for questions! The same; Two doctors and the maternal child health nurse all said numerous times, it's fine. I'm really anrgy with them and moreso with me for not demanding further tests. I think Hailey is in a Pavlik harness, not really sure though, like I said- the paed. didn't say much at all. Your right, Hailey is enoying hugs when she's upset. I am trying different positions with Hailey, she now hates tummy time so it seems to be on her back or upright. I was only bf hailey once or twice a day and it seems to upset her trying to bf so we will prolly go to bottle i think. What sort of questions did you ask? Its really weird, i cannot think of a single question, I must be in denial or something. Thanks heaps for your support and hugs

Nicole;

Thank you so much for the pictures, It was great to see another baby in a harness and looking happy. I am not allowed to take the harness off so trying to get clothes over it is a big challenge! Also no bath is making me very very sad. We loved our baths. Hopefully things start to get better for her soon. She is happy enough when she is awake, its just in her sleep and waking upthat is awful.

Thank you all so much. Back to see Dr Nick on thursday so will let you all know.

Jo

[bridee]

Jo,

My DD was in Pavlik Harness and we couldn't take it off for the first 6 weeks so completely understand the bath but DD ended up still loving sponge baths. With clothes I found romper suits with no feet were good as well as seperates as we needed bigger sizes to fit over her legs but not her arms. I also didn't dress DD in anything with collars as they were always too big and bulky.

Like everyone has said you quickly work out what works and what doesn't.