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Hey Monica, so sorry for the delay in response! I have moved house and lost my internet!
Charlotte is fine with going back into the brace after bath time, was a bit tough at first but fine now! She started crawling in the brace this week which is really exciting!!
We have our 3 month check on Friday so fingers crossed it goes ok!
I hope all is well!
Hi everyone
I'm new too and registered as I Googled HD and came up with this forum - after reading all the posts I decided to join.
A bit about me and my DS...
DS (yes a boy and apparently VERY rare to have HD) was diagnosed with HD last Nov after I noticed he limped when he walked (DOB 29/05/07). It took one month to get into the local paedatrician and get a referral to the Children't hospital Princess Margaret (PMH)- we just rec'd a letter yesturday that we have our initial appt at PMH in one month. It says that DS will require x-rays and the appt will take up most of the afternoon (we live 5hrs away). I assume at this appointment that they will advise us of the next step, which from what I have read/heard from others is a cast, I just Googled images of these casts and got quite upset... I have been pretty ok up until this stage but scared myself with the pics of all these immobilised babies... I just dont know how we are going to cope - our DS is 21 months old at the moment...has anyone else gone through this with an older baby???
Both me and DP work full time too - so not sure how we are going to manage that one either??
Just hearing everyones stories I think will make me feel a little better - and not so alone
Hi Everyone,
I hope you are all doing well.
Emma- I am glad to hear that Charlotte is crawling. I hope all goes well on Friday. Let me know how it goes. Hayley is finally out of her cast and in her brace and has been now for nearly 2 weeks (very glad to see the back of that!). 3 days after the brace went on she started rolling over and now has that down to a fine art. It is so good to start seeing her be able to move a little. She has had a couple of x-rays both of which the surgeon has been pleased with. We go back on the 18th and hopefully then she will only have to wear the brace at night. Hayley has been ok with going back into her brace after her bath but she is only allowed to have it off for 1/2 an hour so it might be different when she stops wearing it during the day.
Welcome Caraash and Lizy79- My daughter Hayley was diagnosed with hip dysplasia of the right hip at 4 months and went into a spica cast for 3 months. She is now in brace and has to wear that for another 2 months. At first it was very hard and I cried alot.Hayley was very distressed when she came out of recovery and no matter what we did we couldn't get her to settle. Our surgeon told us that they adapt remarkably well and she did. By the next day she had stopped crying but she wasn't smiling alot however 48 hours later she was her normal happy self. It took myself and my husband alot longer to adapt but we did eventually. You can't bath them while thay are in a cast so Hayley had to have a sponge bath. It did affect her night sleeping. She went from going down easily and sleeping through to not wanting to go to bed and waking alot during the night. We were told to expect this and she is only now starting to sleep better at night.
I was also very anxious about Hayley going under anaesthetic and it is so hard and upsetting watching the surgeon carry your baby into theatre (because of her age we were not allowed to go in with her while they put her under). Hayley has been put under 3 times now (at 7 weeks she had a hernia repair and twice for the original cast and then a new one 6 weeks later). She has no reactions to the anaesthetic but does get upset when she comes out of it and cries in recovery. She takes a little while to settle again but overall she is fine.
Lizy79- I am sorry I can't give you any advice on an older child going into a cast. I also live in Perth and have been going to PMH for all Hayley's treatment. The cast technician who put on Hayley's original cast is so lovely and helpful. Her name is Scott and she came and saw me prior to the cast going on and answered all my questions. She also came and saw us after the surgery and to go over everything with us. Though I am not sure if you will see her at the intial consult. We have nothing but praise for the people we have so far dealt with at PMH. We are private so have mainly been dealing with one ortho surgeon but occasionally have had to see others and thay have all been very helpful. It will take up most of the afternoon. Our appointments are usually at 2.30pm and we don't leave until about 4.30-5.00pm. Try and get there a bit earlier as parking is terrible. Hayley had already started to roll when the cast went on so she was very upset at not being able to move. I hate to say it but your DS will probably be very upset about being immobilised but so many people told us how quickly they adapt and it was so true. Being older and stronger (Hayley was only 4 months when it first went on and is now 8 months) he may be able to eventually move himself around with the cast on.
I hope this helps and good luck with it all. I hope it all goes well at your next appointments. If you have any more questions please feel free to ask.
Monica
Hi Monica,
Thank you so much for your reply. I feel a little better having found out more info on HD and the spica cast. I have to say that I felt a little in the dark after my appoint on Friday. I have spent the last few days since trying to gain as much info that is comfortable for me knowing-I think too much may freak me out!!
My beautiful girl is due for the procedure March 23. I almost feel as though I want it to come around already so we can get on with it. The anticipation is always the worst part.
You must feel great to be progressing so well. Its nice to hear some positive stories :)
Do you have any tips on how to keep them stimulated while being flat on their backs? Before the brace went on my 6 month old started rolling, but she hasnt at all since (2.5 months). Can they sit in the cast? Doesnt look like it? I feel like shes starting to get frustrated becasue she wants to sit and be more mobile. Did you say that they can actually crawl in the cast?
Sorry I have lots of questions.
Thanks again for the support.
Caraash :)
Hi,
I'm glad you say the PMH are nice - you just never know these days... Im sure it will make it easier having caring staff.
Can ask how you all cope with the cast during summer and this awful heat? Does it get smelly?? Are there any tips or hints??
Hi Caraash,
I hope you are well. I know exactly how you feel when you say you wish it would come around now so you can get on with it. I felt the the same because at least then we had made a start.
Hayley wasn't able to sit in her first two casts as they went from just above her waist down to her toes so she wasn't able to move at her waist. We moved her around alot so she wasn't always laying down. We bought a small bean bag and that worked really well in being able to prop her up. She can't go in a high chair either because her cast (and her brace too) had a bar across it so we either propped her in a rocker or her bean bag to feed her. The rocker we bought was a Childcare brand from Big W. We also carried her around a bit and gave her tummy time which she wasn't too keen on. Her last cast just went from the tops of her legs to her toes and with that one she was able to sit as her waist was no longer restricted.
Hayley had began to roll over when her cast went on and was then completely immobile as it was just too heavy for her to move. Her first cast weighed 900g. She has been in her brace for two weeks now and has been able to roll over for the last week, but I'm afraid that she wasn't able to move at all in the cast.
Children wouldn't be able to crawl properly in the casts but I would think that older children that go into them might be strong enough to pull them and maybe commando crawl but I'm not 100% sure. Hayley went into her cast at 4 months and came out of it at 7 1/2 months so didn't have the strength to move around in it.
One of the major problems with the cast is trying to keep it clean. We bought Huggies newborn nappies to stuff into the cast and then used the bigger nappy to wrap around the top of it and changed her nappy often so it wouldn't leak into the cast. The hospital staff used sanitary pads to stuff into the cast but we found the newborn nappies worked better.
It will be very hard to see your beautiful little girl in the cast and it is very upsetting, especially becuase they are so upset when they first get it on but our surgeon and the cast technician told us the children adapt very quickly and they were right. Within about 48 hours Hayley was her normal self. Although my husband and I hated the cast and are so glad to see the back of it, it did the job it was supposed to do because so far all her x-rays have come back positive and we are happy about that.
If you have any more questions please feel free to ask I will be happy to help you as best I can. I will be thinking about you on the 23rd and I wish you all the best. Let me know how it all goes. I hope this has been of some help.
Monica
XXX
Hi Lizy79,
We didn't go out much this summer as the cast gets quite hot. If we did go out it was in the morning so we could be back in time before the heat really set in. Our airconditioner got a real workout this summer. I dress her in a lot of those little suits that button up under the nappy and I found that her normal size would still fit over the cast so I didn't have to go out and buy bigger clothes.
Hayley had a change of cast at 6 weeks and it was staring to get smelly in the last week. We changed her nappy a lot to try and stop leaking but it still happened occasionally no matter how hard we tried for it not too. We would stuff a newborn nappy into the cast (Huggies) and then place the bigger nappy over the top. You have to stuff something into the cast otherwise all the urine just runs into the back of it. The staff at PMH used sanitary pads but the newborn nappy worked much better. Her second cast was changed after 4 weeks and her last cast she had on for only 2 weeks so those two never got smelly.
I am happy to answer any more questions that you have and I hope everything goes well. Keep us posted!
Monica
XXX
Hi everyone,
Thought i would send a quick update about Charlotte, we went for her check up yesterday after 3 months in the DBB. It was better than i expected, she has got good coverage now but the sockets are still a little flat, so they are keeping her in the brace but this time just 8 weeks and then another checkup, hopefully then it will be gradually weaned! Fingers crossed!
I was please with her progress and really happy that she only has to do another 8 weeks this time!
Also just a bit of a funny note, charlotte's brace size got put up again and he told me she is now in the biggest one they have which usually accomodates 12 month old! She is too tall! So i asked what would happen if she still needs it for longer and they are not sure! I think there is a different kind that they can put her in instead but i just thought it was funny/strange that she is in the largest one already!
Anyway, i hope everyone else's babies are going good and developing well! I am quite pleased with Charlotte's progress and hoping to get the brace off during the day in 8 weeks!
Emma xx
Hi Emma,
I am glad to hear that everything is going really well with Charlotte. I hope all goes well at your next visit as well!
Monica
Hi Monica,
Well yesterday was the big day and as you can imagine we were quite nervous and emotional. The anaethetist told us that L would need both a general and spinal block-my husband and I went white! We had no idea that a spinal was part of the procedure. Anyway we didnt want her to be in any pain so we went along with what the anathetist suggested. We waited to be called into the rcoverey and when we went down to get her we were bracing ourselves for the cast and a screaming child. I didnt see a cast.
Confused I asked if they would be putting the cast on later and the nurse said "no, the surgeon will be here soon to talk to you." I nearly had a heart attack waiting for him as we were expcting him to come back and tell us that it was worse than he initially thought and a more serious operation was needed.
He finally came in and said that when he injectd the dye he saw that the ball was well covered with cartlidge that had not yet formed into bone and therefore had not been picked up on the ultrasound.
So, no incision was needed, no manipulation and no spica cast!! She was fitted with a Rhino brace and discharged that afternoon We were both in shock. I think we are still in shock. She will be in the cast for 3 months 23-24 hrs/day-which we are used to. But the best thing is that we can finally bath her daily-I am SO SO thankful.
Thank you for your support over the last few weeks-it has meant a lot to me.
Hi everyone,
well we just got back from our PMH appt today - the staff were lovely and jsut as helpful as everyone had said. We have DS booked in for Tuesday next week to have his surgery and put on his cast, must admit we're not looking forward to it... I think the look on his face when he wakes up with the cast on will be the killer.
caraash - thats fantastic news!!! I'm so glad for you both - what a lovely surprise =]
Glad to see that everyones progress is so good, gives hope to those of us who are still at the beginning stages.
I have a question about the nappies.. is it best to use Huggies? We currently use toddler Huggies and we're told by PMH to buy the next size up... we were looking into the newborn nappy under the cast - but I'm sure your aware how expensive they are... if its worth buying them then thats fine but if other brands are just as good then we might try those. Any advise would be appreciated.
Thanks :)
Hi Everyone,
Caraash- I was so happy for you when I read your post. You must have been so relieved when you found out your DD didn't have to have the cast put on.
Lizy79- I will be thinking about you next Tuesday. It will be hard seeing your DS in the cast so if you have any questions please feel free to ask! We used the Huggies newborn as we were told they were the best to use by someone else that had been through it. Prior to the cast going on Hayley was wearing infant size and we had to go up to toddler size to fit around the cast so that was an increase of two sizes. We actually didn't have to buy many of the toddler size as we found the newborn nappies absorbed most of her urine and the toddler nappy was still clean. I would put a new toddler size nappy on each night after her sponge bath and again in the morning as I would find that there was usually a bit of urine on it after she had slept all night. So really we were using the newborn nappies mostly as they were getting changed more regularly. I think we only bought two boxes of toddler nappies and that lasted us the 3 months the cast was on and we still have half a box left which I have put away for when she grows into them. I'm not sure if any other brands work as effectively as the Huggies. We got a sample of the Woolworths Select brand nappies in the mail and I used that a few weeks ago and it seemed to absorb well but I'm not sure what it would be like in the cast.
An update on Hayley's progress- We had our appointment last Wednesday and it was good news. Everything is going well and she now only has to wear her brace at night. We were so happy as it is so nice to see her kicking and moving around. She was all smiles when we walked out of the hospital. She has started rolling and although she doesn't weight bear very well on her legs we have noticed that it has improved over the week. We go back on the 21st and hopefully it can come off completely then.
I wish everyone the best and let us know how everything is going!
Monica
XXX
Hi everyone - I am new to this site, finding it after searching for any info I could on hip dysplasia. When my daughter Summer was 6 weeks old, my brilliant GP detected a slight click in her left hip, that the M&CH nurse didn't. At her 6 week ultrasound they were not too concerned bc of her age. A few days ago we returned to the children's hospital for a 12 week check up. They told us there had not been much improvement - diagnosing mild hip dysplasia of the left hip. They then sent us to orthotics to have her brace fitted - a Dennis Brown Bar DB Bar. I think I was just in shock - hadn't prepared myself for it. Then I was bombarded with so much info as you all would have been from changes I would need to make from breastfeeding to her clothes. I had a good old cry and felt great sadness for 24 hours, but after reading all your entries I realise Summer is very lucky. You are all very strong women, and have given me the strength to work through this with my beautiful daughter.
Hi StaceyLee,
Welcome to the site:) You must have been shocked and its always hard-no matter what the severity-to see your little child be fitted with a brace. It is a big adjustment to life but thankfully the children seem to get used to their new situation quite quickly. I think its always harder on the parents. You'll find you'll adapt and it will become very easy-good luck.
Caraash
Hi Lizy79,
I just wanted to wish you a BIG good luck for tomorrow. I hope you're feeling ok today-probably some relief that it will be over with tomorrow.
We are thinking of you :) and let us know how it all goes.
Caraash
Hi everyone, (bit long sorry)
Thanks caraash for your best wishes... I was thinking of you all this week and even mentioned this forum to the nurses - best tips and hints ever!
Welcome StaceyLee - I'm fairly new too, all the ladies on here are lovely and great for asking advice... they all respond quickly too. Feel free to ask me anything though... wish we had your GP, our never picked anything up, neither did the clinic nurse.
Ok, so we got back late last night after 3 days and 2 nights in PMH. We arrived on Monday for the blood test and then were admitted on Tuesday for the op. Hudson went in at 1.15 and was out of the op just before 3 - the lead up was horrible and DP and I have just been terrible to each other over the last week.
When Hudson got out of his op the Dr said that they only had to nip his tendon and manipulate his hip into the socket space, it went in easily and avoided the more invasive procedure - thankfully!! Hudson was doped up to the eyeballs and just went in and out of sleep until the next morning...
When he woke Wednesday morning we braced ourselves for the tantrum to end all tantrums.... but nothing ever came, he has been so good about it and was more concerned about his drip than the cast. He calls the cast his 'shoes' and says 'shoes stuck' but only winges every now and then, more from bordem than anything. Fingers crossed this will continue.
His cast is from just under his rib cage down both legs all the way to his toes. There is a bar from ankle to ankle and his legs are splayed so far apart they nearly rest on the ground when he is laying on his back. This was a surprise for us as we thought he would be in more of a sitting position. He is really hard to carry and HEAVY. We had his pram modified with a board for his legs to rest on and we had to rent a carseat as ours wasn't suitable.
Now we are home and while I'm at work during the day DP looks after Hudson then DP goes to work at night - I day down, about 83 to go.
I think my little man is now my new hero =]
By the way - for any others going in with older toddlers, take a portable DVD player! If not for your child then maybe for you at night (with earphones). Saved our lives... in a 6 bed ward there was only one tv and we couldn't see it from our angle.
Hi Everyone,
I hope you and your bubs are all doing well!
Lizy79- I am so glad Hudson's procedure went well and what a brave little boy for not letting it bother him too much. The cast sounds exactly like the first one Hayley went into and it is so cute he refers to it as his 'shoes'. I wish you all the best and let us know how he is progressing.
I wish you all a lovely Easter!
Monica
Hi all,
I thought I would share my story...My DD Leila was diagnosed at birth by the paediatrician with hip dis. When first told the news of this I burst in to tears...worried...unsure I guess but then was explained it was kinda a given since the 37 week ultrasound we had found she had decided head down was not the way for her and turned to breech. I had a CS a week later. All good, recovered fast except for the excess weight lol still going on that department! Anyways Leila was in the pavlik harness from about day 3-4?. Can't quite remember. Before we got it thought we were encouraged to use a double nappy apparently the old fashioned way from the harnesses these days and that Leila was to sleep on her tum next to someone. This was done much to the midwifes disagreement. But 9 weeks later and only about 24 hours all up out of it, thats right no bath...just wash downs except for when she pooed all over it!!! Middle of winter difficult to dry I had it haning from a hook off our balcony god knows what the neighbours thought...Leila reached all her milestones as normal and walked just days before her 1st birthday. Our 18mth scan showed its not completely healed but hopefully with time it will evetually go into place. And it has certainly not tarnished her from becoming a toddler!
All the best to those of you experiencing this. Treated children grow and it shouldnt affect them. Take care,
Rach