Hip Diplaysia Support Group #3

[Suezt]

Rachelle, I have tears rolling down my face. Your poor little girl. It's been a few days since your message - has she got any better? It really must be so frustrating for them. I'm sure with time she'll get used to it - but that doesn't help the now does it? Huge hugs to you. I really feel for you and wished I live near you to come around.

It's been ages since I've been on here and something must be wrong with my link to here - cause I haven't received any emails telling me that there were new messages on here. I just assumed it had been quiet on here and no one had posted any messages. And then I come on and there's pages! Grrrr

Karen, it's great to hear that Summer is getting better in her brace. Re: clothes - I too have been thinking the same getting ready for summer. I went into Kmart this week and they have little cotton leggins for girls. They're really cute. And seeing that they are cotton and 3/4 length they won't be as hot. I'm so praying that Sophie gets her brace off on her next visit on 27th Nov - she would have been in the brace (rhino) nearly 8 mths by then. We've had a few hot days here and it seems she has a permanent rash/mark around her legs and waist. How do the mums/bubs cope that live in hotter climates?

Kartier, we too had sleeping problems around the 6 month mark. I'd just got Sophie sleeping through the night and she had to go in the brace We had a week or so of shocking sleep once the brace went on - but after 2 weeks I got tough like Rachelle, I did the control crying thing and it only took a few nights for her to start sleeping through. My fear now is once they take the brace off she'll find it hard to sleep through. Has anyone continued to put the brace on their kids at night to sleep once they've been told it can come off? I suppose we'll cross that bridge when we come to it

Sophie is going well. Still bum scooting around and taking in the world. We've both had colds on and off lately - so that's put a damper on things. She's just started to pull herself up this last month on to her knees - even in the brace, but still shows no signs (even when the brace is off) of wanting to stand on her feet. In fact she cries when we put her on her feet. Still, not walking at 14mths has its advantages!!!

Anyway, just wanted to pop in and say Hi.
Take care ... hugs to those who need them!
love
Susan

[Kartier]

Hi,
Just wanted to give you all an update on DD progress. We all had a rough few weeks. We went to see her specialist a few weeks ago to see if DD could have her harness off all together only to be told that her hips had not healed as fast as what the specialist had wanted. We were shattered at the news. DD was placed in a Rhino cast/harness, which restricts her movement more than the Pavlik Harness. DD hardly slept or ate for the first 3 days after the Rhino cast was placed on her. We have been told that she will be in this cast for 6 more months. I think we both cried hearing that as we were hoping that she would be free from the cast/harness by her first Christmas. It may seem selfish but I wanted DD first Christmas to be free from the harness so she could play. She will still enjoy her Christmas no matter what; just feel upset that she needs to be in the cast for another 6 months. I know that this is for the best for my DD but I know that as a mother I just wanted her to be happy and I know that she is starting to fight me and get frustrated which makes me upset. Not sure what else I can do to help her or us at this stage.
Rachelle- how is DD going? Has she started to settle down yet? Any update on what her specialist thinks?
Karen- how is summer going?
Suzet- My DD has just been fitted to the Rhino Cast and it has been rather hot at the moment. I have put cloth around her legs where the straps are. This helps stop the rash, hope this helps.

[bridee]

Hi All,

An update on Georgie. We saw our specialist yesterday which is 6 weeks since her Pavlik Harness has been fitted. We had good news, her left hips which was considered mild initially is now normal and her right hip which was considered severe is now mild (67% coverage). The specialist said another 6 weeks should be all that is needed. She can now be out of the harness for a few hours each day which means she can now have a bath again, which she (and us) thoroughly enjoyed last night.

Kartier, we are fortunate that Georgie will be able to celebrate her first Xmas without the harness.

To everyone I hope your little ones are coping ok and more importantly you are coping ok. It looks like our journey is going to be relatively short compared to many you.

[Suezt]

Hi Kartier,

Sophie too is in the Rhino - she's been in it for nearly 7 months now. At first it was very restrictive - but over time the brace becomes very flexible and molds to their movement. The first week for us was a shocker with Sophie waking every half hour - now she won't sleep if she doesn't have the brace on! E.g. if she falls asleep in the car on the way home and I go to put her in the cot - she won't go back to sleep until I put the brace on her! It's become a bit of a security blanket (which worries me when she'll eventually have the brace off)

I'm sorry to hear that you have another 6mths with the brace. I always get my hopes up when we have our Orth. Surg. visit only to come out of the surgery nearly in tears. My last visit was on Sophie's 1st birthday and I was so hoping that he would tell us they we could be rid of the brace and give her the gift of freedom & 100% health for her birthday! You can imagine my disappointment when he said see you in 4 mths the brace is to remain on same as usual - so I know what you mean about Christmas! It'll all be over sooner than you know. Actually I really don't think much about Sophie being in the brace anymore - it's just part of our everyday routine. She too doesn't seem bothered by it. She scoots around on her bum, rolls over, pulls herself up - whilst she has the brace on. Actually the OS said he wouldn't be surprised if next time we come in she'll be walking in it. It's only a month til our visit and I don't see that happening - but it's good to know they are capable of doing anything that the other kids are doing! They're such little champions our kids. BTW - great idea about the cloth rather than having full length pants/leggins. I'll give that a go if it gets too hot - thankfully we're in Melbourne. Thanks. Hugs to you.

Bridee - that's fantastic news about Georgie. Congrats.

Anyway, I'm off to bed now. Chat soon. Susan xxx

[BubbaGirl]

Hi everyone,

Summer had her spica changed last Thurs and the xrays looked good. The spica will definatley come off in 5 weeks on Monday (3 Dec). She now has hot purple fibreglass instead of plaster and her legs are not positioned as wide as before. It isn't fun to see your baby go under anesthetic and come out at the end of it but it was a little easier this time. She actually woke on her way back from surgery and the nurse came to the waiting room asking for Summer's mummy with her crying in her arms. She settled pretty quickly.

Summer has been fitted for her brace and will go into that when she comes out of the spica. I can finally see a light at the end of the tunnel (well this bit anyway) and am starting to perpare myself for her to be in the brace for 6 months. My specialist initially said 3-6 months so will not set my sights of her coming out of it for her first birthday in March.

Kartier - my heart bleeds for you as I know how disappointed I was to learn that Summer needed the spica then brace for 6-9 months all up (when she was already nearly 6 months of age). Our bubs are also that bit older and we are seeing their development delayed which is the hardest thing of all. I'm sure you're like me in that you wonder what DD would be doing at this point and compare her to other babies at her age. Its a normal thing I guess. I know its hard to see now but when she is older you will look back and be glad that the problem was fixed. I do wonder why the treatment (ie. spica or brace and length of time) seems to be so different for all DD's. There just doesn't seem to be much consistency from people's stories. Hang in there and keep up the good work.

Susan - thanks for the tips on the clothing. I think I'll just wait to see what position her legs will be in etc. Summer will be in the brace until she's 1 or more which at this time is a little hard to accept when their development is so delayed. I am hoping that Summer will learn to roll again, crawl and maybe walk in the brace. What is the rhino brace?

Just wondering if anyone is being treated in Syd by Michael Bellemore (head of orthopaedics at Westmead). Might try and catch up on our next visit in Dec.

Does anyone have any experience of what to expect when DD goes from spica to brace (DB orthosis with waist and leg straps)? Also can anyone recommend a good high chair that works with the brace?

Keep on soldiering on everyone. Everyone seems to have their good and bad days which I think we would have anyway if they weren't in their spicas/braces. Our kids are very special and we all deserve a pat on the back for all the special care required.

Until next time...

[Rachelle]

Hello again Ladies!

Sorry it's taken me so long to respond to all of you. Taylor is doing so much better. I think that she actually was reacting poorly to her pain medication because once I took her off of it, she was back to being happy most of the time. She still gets frustrated, but it's been a couple of weeks since her surgery and she is now starting to pull herself on her stomach to go and get toys. She still pulls her hair when she gets really angry but I usually catch it before she gets too frustrated. She is also a really good talker so I am encouraging her to use her words instead of screaming. I have a bean bag chair which has worked great. I was also able to adapt one of those highchairs that straps on to the normal dining chair. I just had to unstitch the side and she sits in it perfectly up at the table. I also have a small stool that she sits on. I put it up against the wall and then her dad adapted an old coffee table and I am able to push that right up to her. I am finding it's the perfect spot for coloring, puzzles, books, and other activities. I also found that she fits in her stroller still, which is so much lighter than the wheelchair, so we are able to get out of the house and go for walks. Being that Taylor is 19 and 1/2 months old, with the cast on she weighs 30 pounds, so I am happy that the stroller works and that I don't have to carry her everywhere.

For those of you who have had babies in spica casts, what do you do to get the urine/ammonia smell out of them? Taylor's diaper has leaked a couple of times and I've used vinegar/water and then baby powder but it still smells badly of ammonia. Any suggestions would be appreciated.

KARALEE- Welcome to BB! You are in my prayers. I know how hard it must be as a new mom to hear that something is wrong. This is not your fault. When my DD was diagnosed at 18 months old, I thought the same thing: maybe I accidentally dislocated her hip when I was playing with her? Just know this is a developemental issue and there is nothing you could have done during pregnancy to prevent it. From what I've heard the risk factors are 1) first born child (because your uterus is a lot tighter and the babies don't have as much room) 2) Having a girl (because they have more of the hormone, Relaxin in their systems 3) Having a baby born breech. So, all this to say, you couldn't prevent this somehow. Don't blame yourself. Allow yourself to go through all of the emotions (you will be up and down) but it does get better!

KYLIE- Good luck with your ortho. visit on the 8th!

SUSAN- I hope that you and Sophie are feeling better.

KARTIER- Sorry to hear about your DD's visit to the specialist. I can't imagine how hard that must be for you, to think that you are at the end of the road only to be told that you have to deal with it for another 6 months. I'm sorry! You will be in my prayers.

DEE- Congrats on your good news from the specialist!

BUBBAGIRL- I am glad to hear that Summer's cast change went well.


Well, I'll talk to you all soon. Only 2 more weeks and then Taylor will get her first cast change. She'll go under anesthesia again but I anticipate it will be easier this time than it was for her surgery.

Take Care All!

Rachelle

[bridee]

Karalee - Just wanted to reaffirm what others have said - it is not your fault. My daughter was discovered to have hip displacia at 6 weeks. She was put in a Pavlik Harness. Like you I was concerned about I would be able to cuddle her and hold her and breast feeding. Well I really did not need to be concerned. In terms of holding cuddling just minor adjustment but very easy, people have actually commented it is easier to hold her with the harness on than without (she's less flopping in the back with it on). What we missed the most was not being able to bath her but she surprised us and still loved the sponge bath we were giving her. In terms of breastfeeding, in the lead up to her being fitted with the harness I got a supply of expressed BM ready in case I had troubles and had to bottle feed her. In the end didn't need it I really did not need to change my position (she has always been a excellent feeder). If you have any questions PM. My journey with the harness has not been as long as some (has been fitted for 7 weeks and looks like will only be needed for another 5 weeks) but if I can assist would be happy to.

Melissa - Question for you, do you know the % of coverage Olivia has. Just interested as Olivia was fitted at about the same age as Georgie and followed a similar time frame 6 weeks full time and now up to time out of it (Dr said can be a couple hours a day). Dr said has probably after the next 6 weeks she won't need, having read your time frames I wonder whether it will really be the end.