Hip Diplaysia Support Group #3

[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.

[Kartier]

Hi Jo,
Good luck with your appoiment on Thurs, hope is goes well. It is often confronting to walk out with a child in this harness as you dont know what to say or do. We went in for a check up to and came away 12 hours later with her in the Pavlik Harness. We ended up at a resturant as we were so upset ot try and drive home that day. People around us just looked at her with care and concern. We didnt know enough about the condition to tell people why she was in that position. Over time I was able to tell people what the harness was for when asked. I didnt ask any questions at all for the first few visits but during that time I researched "clicky hips" on the net and looked on the support website and read what I could to help Chloe with this. You are not alone in having both doctors and nurses miss the condition, ending up with Chloe in two harness by the time she was 9 months old. I was so angry with them but knew that she needed all my strength and support. Mind you I gave them a piece of my mind about it and never went back there. Dont beat yourself up over not asking or following up on it as when you are a mother you worry about so much and take the professionals word. Now I know that they to can be wrong. I just gave Chloe loads of cuddles and knew that she needed that contact. It works a treat. Sorry to say, but I found breastfeeding in the end impossible as being in the Pavlik I had to place her in a split postion to feed, she would often get upset over it so I went to the bottle and placed her on the floor or pillow and sat next to her. She was happy with that, but I missed the contact so much. In the end she was feeding well and that made me happy. I know that tummy time is hard now but try her a little each day as It helped Chloe with her coordination. Some of the questions I asked were:
1) What is her current hip % in each hip- Often one hip is worse than the other. That way you can see how long you are looking at her being in the brace.
2) Is there anything that I can do when she is allowed out of the brace to strengthen her legs (Mind you she was 4 months old) and keep her active.
3) Will this impact on her develpment? (often the answer was no that she will develop as a normally as possibe)
4) What can I dress her in (we were told not to put pants on her as she would get to hot, not sure where you are living but it is hot here in Sydney) So I got her larger size tops that would cover her harness at night
I have a list of all my questions, I will look for it and write again. Mainly the questions were related to how long she would be in it, what the current hip% is and what could I do to help her improve her recovery. In the end we were allowed to take her swimming on her brace free time which strengthened her legs. Hailey will adjust to it, it may take a week but she will be o.k. We all can tell you from experience that it will get better as time goes on and she will be back to her happy little self. Let me know about Thurs, we are all here.
Kartier
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

[Haileys Mum]

Hi Kartier,

I have got a list of a few questions, pretty much as you have said. I am numb, can't actually think of many questions! I live in Portland, south west victoria on the coast, it has been warm here but generally just nice. Hailey has always been a hot baby anyway, she is sleeping in the harness and a sheet usually, sometimes a tee shirt.
She is still not sleeping well, goes to bed and sleep no probs, the wakes up every half an hour or so crying, sometimes screaming inconsolably.That is what i find so hard.
I will let you know how tomorrow goes,
Thank you for your support and advice.

Dee;

I am going to ask if I can put pants or suits on her as i think he said last week i couldn't. But thank you for the suggestions.

Jo

[nicoli]

Hi Jo - Just on the breastfeeding question - I managed to breastfeed Scarlett for the full 2 months she was in her harness. It was difficult especially at first as she couldn't get comfortable. The physio who fitted her harness told me I wouldn't be able to lie her on her back to feed her because she would get a sore neck twisting to latch on, but that is how I found it most comfortable for both of us. I tried with her body facing me but as you would know they are so flat and wide with the harness on that I would have had to stand up so her bottom leg had room. I did give her a bottle of expressed milk every couple of days and she was so much more comfortable so if you find bottles are better just go with that.

We just found out that my husband (32yo) also has hip dysplasia. Only since Scarlett was diagnosed has he been getting pain in his hip so he finally went to the doctor to check it out. They did an xray and confirmed that he also has a shallow socket. Now we have to go to the orth surgeon to find out how bad it is and what treatment is available. I don't think his will be as straightforward as Scarlett's.

[LauraK]

Hi everyone.

Jo - how did the appointment go? I hope you managed to get some answers and hope you feel a bit more informed now. How has Hailey been sleeping? Do you think she is any more settled in the harness?

Nicole - It's so encouraging to see the lovely photos of Scarlett and to see how happy she is! What a gorgeous little girl you have. I'm so sorry to hear about your husbands hip, are you any closer to finding out what treatment he will require?

We were due to go back to the hospital when Harrison is 16 weeks old, we received an appoitment which was past this date so after a few phone calls we managed to get an appointment today although he is only fourteen weeks old. We are fairly happy with the way that things went. The doctor said he felt that Harrisons range of movement was better and he also said that last time he examined Harry he could feel the right hip clicking but today he could feel no clicking - he said this was a good sign. We need to go back in 6 weeks time when Harry is 20 weeks old and they will do an x ray so we should know more. I really want to take him swimming and forgot to ask the doctor if that would be ok. Has anyone taken their little ones swimming in their harnesses? I don't think their will be a problem as we can keep the harness on while in the swimming pool and then just put a spare one on when we get out - I'd better check with the doctore first I think! I just really want him to have an experience of being in a swimming pool before we go on holiday in May, also I don't want him to miss out on what other babies are doing!

Take care everyone.

Love Laura x

[minimatron]

Hi All,
Hailey, my dd was in a Pavlik Harness for 6.5 months, the first 6 weeks was 24/7, the next 6 she could have it off for 20 minutes a day, then the following 16 weeks she wore it at night only. It was very hard to see bubs like that and she didnt sleep well either for the first week. Sponge bathing was a challenge, especially when she ended up with gastro!
I basically dressed her in bonds wondersuits as they had heaps of stretch. Anything with stretch is fine. Pants are ok if they dont bring the hips in...so no jeans. I would put bonds leggins on her too.
Again, what i would stress is to give her loads of tummy time or prop her on pillows or a bean bag. My dd has a very flat mishappened head from me leaving her on the floor all the time (i feel guilty about that...but cant undo it). Tummy time is easier if you pop a rolled up towel under her chest to assist her. If she starts crying just count to 10 and then bring her up. She'll get used to it.
Oh and the other thing i sed to dress Olivia in overnight was a sleepingbag. I think you can get thin ones for the warmer weather.
If you need any tip, just pm me.
olivia is doing really well now, its amazing how quickly they catch up.
Good luck.
Love Melissa

[Haileys Mum]

Hi All,

We went to see the Dr on thursday and didn't really get much from him. Hailey is too old!! for him to make a decision about what he thinks will work for her so is leaving it upto the paed ortho to make the decisions... I pushed a bit but he really couldn't say much. Thought at best Hailey would have to wear a Dennis Brown Bar for 3 months, but he really wasn't sure. I asked, and begged and pleaded about bathing!! He said Hailey can have a very quick bath once a week then staright back in ahrness, and I'm happy with that, I understand usually they are not allowed out of harness at all to start with. So we had a bath today, I got all excited and thought she'd love it but hated it! as soon as the harness was off and her legs staightened she was obviously in agony, very sad, so she sat scrunched upin the bath like she had the harness on and was ok. When I dried her I noticed in her thigh/tummy fold where her kness are pulled up she has skin missing, like an old blister, I have been super careful to keep this dry and clean and powdered. Any suggestions?? I asked about the sleeping, we went through lots of scenarios, one thing I did say was that Hailey seemed to sleep better in our bed that in her cot since the harness went on. So i wondered if cot matress was to hard? He thought maybe , so I bought some eggshell underlay foam and put it under her sheet. Two great night sleep. Thank god!!
Melissa, the bonds stretchies pants are great, thanks, tried some last night and she was happy. Didn't seem to pull her legs in at all. I will get a sleeping bag as it cools down. At the moment she is sleeping in a singlet, the harness seems to make her quite warm.
Laura, Hailey is definatly settling into the harness now. I am slowly working out how to feed her, sit her, position her so she is comfortable. She hates tummy times so we are trying shorter more frequent times.
Nicloe, its weird about you mentioning your husband- i asked the paed if i could have some sort of dysplasia and not know; I have always had hip problems, but he said no way. Perhaps I should follow it up with my gp. Have you found out any more? I hace stopped bf Hailey, which issad for me, but It was just too hard for her. Her dad is enjoying giving her a bottle now so that makes me feel good.

So for now I guess we just wait and get used to the harness...

Thanks again for all your advice and support.
Jo

[minimatron]

Jo, we used to get bad rashes there too, so red and yucky. I guess it is being more aware that you have to dry thoroughly in every fold. The other place was under the arms, once they got so yucky, then ever since, i have made sure they are super dry. Glad the bonds stuff was ok. Its quite warm now and the harness does keep them warm, so a singlet is fine at night. Funny thing was after the harness came off, I initially found it hard to dress her in appropriate clothing coz we always dressed her light.
Good luck with tummy time. And am sorry bf hasnt worked for you while shes strapped up. And am sorry the Dr couldnt give you the answers that you needed. At least you get a bath in.
Hi to everyone
Love Melissa

[nicoli]

Hi all

Jo - I would get a second opinion about your hips. It seems like a ridiculous thing to say. Unless the hips are dislocatable (which even Scarlett's aren't) how would you know? The only way we found out about my husband is with an xray. We go to see the orth surgeon on 14 Feb so we won't know ay more unitl then. Scarlett also had rubbing in the pavlik harnes. Particularly under her knees where the air didn't get in. I just wiped it each time I changed her nappy and made sure it was dry. There's not much else you can do.

Laura - I can't remember which harness Harrison is in (probably different to the one we have here). We couldn't take Scarlett swimming when she had the pavlik harness on becasue we couldn't take it off and it couldn't get wet. Now with the dennis brown brace we can take her out of it for swimming as long as we only have her out of it for a total of 1 hour a day. She has been swimming twice - once at the beach and once in a pool. She quite liked it so I'll hae to take her again soon.

Scarlett goes back to the orth surgeon on 19 Feb so I'll let you al know how she goes after that.

Nicole

[Haileys Mum]

Hi all,

Well I guess now i wait till friday when we see the ortho at the kids. Has anyone heard of Leo Donnan? That is who we are seeing friday?
A general bf question... I haven't fed hailey since last friday. My right boob is really sore, normal??

Hi Nicole,

I definatly will get a second opinion about my hips, and ask for an xray. I have statred using the curash powder to keep it dry as well.

Thanks,
Jo