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Thread: Hip Dysplaysia Support Group

  1. #127

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    Hi Everyone,
    We have survived one week in the spica cast and things are starting to return to normal. At least I feel like I am starting to accept it.
    I was looking on the net tonight about dysplasia and found a medical article that said that there is a 6% chance of your second child having it if your first one does. That means that there is a 94% chance that it wont. Those odds are pretty good.
    Once again thanks everyone for your advice and support. I have taken it all on board and although I can't wait until its a thing of the past, I am dealing with it a whole lot better!
    Monica


  2. #128

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    Hey Nicole...congrats on your pregnany. wishing you a happy and healthy one.

    As you know, Olivia was given the all clear last month. i asked about our new one as i was 36 weeks pg then. The specialist said that she has a slightly higher chance of having ddh. he recommended a scan at 6 weeks and an ortho review. Well dd was born just over 2 weeks ago. they couldnt feel a clunk like Olivias hip. We have a review in jan. The health nurse yesterday couldnt feel anything either...so heres crossing fingers. I know your anxiety nicole, I remember asking the same questions. I hope this relieves some of it for you.

    All the best to those who are embarking on the journey of hips!!! its a hard time, but it does get better. olivia is 20months now and shes doing so well.
    Melissa x o

  3. #129

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    Hi Everyone,
    Thanks Tammy for your advice. I hope all goes well on the 11th and that this will be Eleni's last spica. My thoughts will be with you!
    I understand how you feel about not wanting to go out because you see all the "normal" babies. I find myself looking at little babies legs and just wish I could see Hayley's again. I know I will eventually but it is hard. Also I wasn't prepared for the number of people that stare at her. I know they don't mean to be rude and they think it is probably rude to say something but when I took my son to kindy the other day one of the mums looked at her and said "Oh my god, what happened" and I actually appreciated that reaction because at least she said something and didn't just stare.
    Hayley also loved her bath and had began swimming lessons which she enjoyed and all that had to be given up.
    I had her at the clinic nurse on Tuesday and she has lost a bit of weight since the spica went on. She told me not to be worried but I am a little bit. Did this happen to anyone else's child after having the spica and/or the brace put on.
    Hayley is getting better being on her tummy. The nurse suggested that we prop her on something so I put her on a little cushion which she seems to like better.
    All the best to everyone!
    Monica

  4. #130

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    Hello everyone

    Sienna had her operation last Monday and they ended up having to do an open reduction (cut in the groin) to put the hip back in the right spot. Her spica is from under her arms right down to her ankles - very high! Even the nurses thought so.
    Monday was pretty tough, lots of tears, from Sienna, myself and my hubby. But we got through it. Sienna slept through the night for the first two nights - probably due to the anaesethic. The last few nights she has woken twice, so she is getting better. She did not eat hardly anything for the first few days, but drank alot.
    Thanks for all you tips on bedding and nappies. I am using the aldi newborn inside the spica and a bigger nappy on the outside. I am also putting a low pillow under her head and one under her feet at night. This seems to help.
    Sienna was getting better as the week went on, then she got a high temp, was vomiting and we ended up at the hospital all day Friday. She now has a urinary infection and is on antibiotics. She is quite good today though - she does want lots of cuddles from us and is enjoying her bean bag we bought her to sit in. She does not like being on her tummy at all, and dreads nappy changes as we turn her over to put the newborn nappy under at the back.
    Tammy - thanks for your advice on bathing. We used the kitchen sink for her hair and then sponge bathed her upper body and feet. We also just bought a plastic showerhead from the $2 shop to place on the tap, which helps immensely. I highly recommend it. Hope all went well in Sydney.....thinking of you.
    I also feel for Sienna as she is missing out on lots of things. She especially loved her baths and swimming. Her plaster comes off in just over 5 weeks and then hopefully just a brace, depending on how she goes.
    I now understand what you all said about the weight of her spica too. She is now 3kgs heavier and being 7 months pregnant makes it hard. I am getting used to holding and carrying her, but the worst is putting her in her cot as even with the gate down it is quite high and I am short. We also put her mattress up on the top level like when she was a newborn, this also helped with putting her back in.
    Thanks again for all your support. I must go now and give my hubby a break.
    Take care
    Paula

  5. #131

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    hi everyone,

    i just wanted to note that i hope Sienna is going ok and that she will handle the rest of the 5 weeks well also... i am amazed at how well Charlotte has adjusted to her brace (obviously has alot more mobility than a spica though)... she is actually able to sit up in the brace which is really good at 6 months but cannot balance without it!

    Anyway i just wanted to say also that i hope eleni is doing ok now and has not needed surgery...

    We have a fitting on 5th January which i am looking forward to because the brace charlotte is in seems to be rubbing and causing red marks on her bottom... so far no skin breakage but the red marks dont go away at all in the hour she is out of it and so i am worried it will develop into a pressure sore...

    anyway, good luck to all and hopefully the next updates u all post will be good ones!

  6. #132

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    Hi All,
    Paula- I hope Sienna is doing well and is adjusting to her spica.
    Emma- I am so glad to hear that Charlotte is adjusting well and beginning to sit up as well. Thats great!
    Hayley is also doing well and although we still have some bad nights her sleeping at night is getting better.
    We had a fright tonight because when she woke up after her sleep her toes on both feet were blue. We were just about to rush her down to the hospital but then my husband suggested that we turn the aircon off and see what happens. It wasn't long before they were pink again. The poor little thing was just cold but it made us worry.
    We had our follow up appointment on the 9th and it went really well and we walked away feeling quite positive which was nice. The surgeon said that it would be highly unlikely that they would put her into a third spica and she will just have to go into the brace for a bit longer if it is still not good after 3 months, which I am glad about because at least the brace can come off for a little while each day.
    She is due to go in for a spica change on 6th Jan.
    Hayley is 6 months old in a couple off weeks and due to start on solids. Has anyone got any suggestions on what to do for a high chair. Because of the spica she can't sit up so I was wondering what everyone else has done to prop their chn when feeding.
    Good luck everyone and I hope you all have a great Christmas!!
    Monica

  7. #133

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    Quote Originally Posted by MonicaP View Post
    Hi All,
    Paula- I hope Sienna is doing well and is adjusting to her spica.
    Emma- I am so glad to hear that Charlotte is adjusting well and beginning to sit up as well. Thats great!
    Hayley is also doing well and although we still have some bad nights her sleeping at night is getting better.
    We had a fright tonight because when she woke up after her sleep her toes on both feet were blue. We were just about to rush her down to the hospital but then my husband suggested that we turn the aircon off and see what happens. It wasn't long before they were pink again. The poor little thing was just cold but it made us worry.
    We had our follow up appointment on the 9th and it went really well and we walked away feeling quite positive which was nice. The surgeon said that it would be highly unlikely that they would put her into a third spica and she will just have to go into the brace for a bit longer if it is still not good after 3 months, which I am glad about because at least the brace can come off for a little while each day.
    She is due to go in for a spica change on 6th Jan.
    Hayley is 6 months old in a couple off weeks and due to start on solids. Has anyone got any suggestions on what to do for a high chair. Because of the spica she can't sit up so I was wondering what everyone else has done to prop their chn when feeding.
    Good luck everyone and I hope you all have a great Christmas!!
    Monica

    Hi Monica,

    Hopefully Hayley will be all good and into a brace in January. For a highchair substitute I bought a "Snazzy Baby" Portable High Chair. It is a harness type thing that goes around any dining chair. We just place a pillow under Sienna and behind her head and she sits perfectly at the table with us. It folds into a little pouch so you can even take it with you if you go out for dinner too. It was $35 at baby bunting. Well worth it. There are a couple of different varieties on the market but it depends on the type of chairs you have at home. This sort suits all chairs - big and small! I hope this helps. I would post a picture, but do not know how.
    Sienna has also lost weight, there seems to be so much room now in her spica. She is however eating better now.
    I have not put Sienna on her tummy yet as even when we change her nappy and put her on her belly for a few seconds she cries. I might try doing it next week with the cushion under.
    I hope everyone has a great Christmas with their little treasures. Take care and stay safe.
    Paula

  8. #134

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    Nov 2007
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    Hi everyone

    I hope everyone has a safe and relaxing break over christmas. I feel for all you guys who have bubs in casts at the moment and hope they are able to enjoy all the attention (and presents).

    Nicole

  9. #135

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    Hi Paula,

    Thanks for the tips on what to use for feeding. I will have a look for the 'Snazzy Baby'.
    Hayley also hated being on her tummy. When I asked the clinic nurse about it she said that that was because when they lift their head on their tummy they use alot of tummy muscles and now those muscles are restricted because of the spica which makes it more difficult. She also suggested a cushion and when she starts to grizzle to take her off her tummy (we were told by the cast technician that she needed to be on her tummy for 1/2 an hour at a time, which is impossible!). The cushion worked well for Hayley and although she still only stays on her tummy for a little while she prefers to be on the cushion ten flat on the floor.
    I hope the cushion works for you and Sienna and thanks again for the high chair tips.
    Have a great Christmas and New Year!

    Monica

  10. #136

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    Quote Originally Posted by MonicaP View Post
    Hi Paula,

    Thanks for the tips on what to use for feeding. I will have a look for the 'Snazzy Baby'.
    Hayley also hated being on her tummy. When I asked the clinic nurse about it she said that that was because when they lift their head on their tummy they use alot of tummy muscles and now those muscles are restricted because of the spica which makes it more difficult. She also suggested a cushion and when she starts to grizzle to take her off her tummy (we were told by the cast technician that she needed to be on her tummy for 1/2 an hour at a time, which is impossible!). The cushion worked well for Hayley and although she still only stays on her tummy for a little while she prefers to be on the cushion ten flat on the floor.
    I hope the cushion works for you and Sienna and thanks again for the high chair tips.
    Have a great Christmas and New Year!

    Monica
    Thanks Monica, I will give the cushion a go and try for 30mins a day. But as you say, that is going to be hard.
    Can anyone help me in regards to when we should take Sienna's tape off her open reduction wound. The nurses told us 7-10 days, we tried last night which is just over 2 weeks and it looks like we pulled a stitch. I am a bit scared to try again, apart from the fact that Sienna absolutely screamed from the pain of pulling the tape. I assume we need to do it to give the wound some air and to heal properly. Any advice would be great.

    Take care all
    Paula

  11. #137

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    Hi Paula,

    Hayley had a closed reduction but they did nip a tendon to relieve some tension and although she didn't need a stitch she had tape over the wound. When she was 7 weeks old she had a double groin hernia repair and after that surgery she had dissolvable stitches and again tape over both wounds. After the hernia operation the surgeon told us the tape will come off by itself and in both cases the tape just slowly started to lift by itself and after about 10-14 days we were able to take it off very easily and it didn't hurt her. Also today we had a bit of an issue with Hayley's cast and I just rang the hospital and spoke to someone there and they were very helpful so maybe ring the hospital and see if someone there can give any suggestions. My GP has also been very helpful with any concerns or queries I have had regarding the spica. I hope that is of some help to you.

    Monica
    Last edited by MonicaP; December 23rd, 2008 at 11:43 PM.

  12. #138

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    OOh I havent been in here for ages...for those of you who dont know me, my dd1 was diagnosed with cdh at birth. At 5 weeks she was put into a Pavlik harness and was harness free by 8 months In November last year, she was given the all clear.

    2 weeks later, dd2 was born. She has positional talipies, which are looking good. The Pead thought he could feel a click, he physio couldnt and neither could the orthopaed surgen. Since being home in the past 7 weeks, the chiro cant feel a thing, neither can the health nurse nor the gp.

    Today we are going for Rebeccas hip ultrasound. Next week we have the orthopaed review. I am quietly confident that things will be ok, but there is a little niggle in the back of my mind, expecting the worst. At least I know that its a hard journey, but things WILL be ok in the end. So I just thought I would pop in and let you know where I am at....

    all the best to everyone and your hip kids

    Melissa

  13. #139

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    HI Everyone,

    I hope you all had a good Christmas and New Year.
    Hayley had her spica changed yesterday and boy were we glad to see the back of the old one, it had definitley seen better days!
    The surgeon was pleased and said that the hip felt stable in the socket and this cast stops at her ankles as her feet had swollen. I am so happy to be able to see her little feet again.
    This cast also doesn't have a bar across it so it is so much easier to give her a cuddle.
    She is in this cast for another 6 weeks and is getting measured up for her brace in 4 weeks.
    Melissa- Congratulations on the birth of Rebecca. I am glad that all looks well so far and I hope everything went well with the ultrasound today and the review goes well next week.

    Monica

  14. #140

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    Thanks Monica, the ultrasound went ok yesterday, I asked loads of questions and because I had been there before with Olivia, I knew which questions to ask to satisfy me. Basically Rebecca has above 70% coverage on both hips which is fantastic, Olivia had only 23%, and they werent able to dislocate them either. The only concern that they have is that the left hip cup is a bit rounded and they are not sure if this is because it is still cartlidge. I have been booked in for another ultrasound in 6 weeks and we are seeing the orthopaed next Thursday to discuss the results. Am hoping for no treatment, but if we do have to going on those figures of coverage and the inabitlity to dislocate the hips, it will be minimal....I hope

  15. #141

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    Hi everyone, I'm new here, my second daughter, Addison, was just born on December 10th, and at her first appointment, not even a week later, the pediatrician felt her left hip click and sent us for an x-ray(I didn't think x-rays worked in babies under 6 months, but ah well). They then sent us to a pediatric specialist and he said he did not feel anything, but sent us for an ultrasound anyways. After about a week, he called and said that she does have dysplasia and that we needed to get her in a pavlik harness asap. We went to an orthotist and got a very uncomfortable harness and when I got home and looked over the instructions, saw that the guy fit it wrong. He had the chest strap down around her stomach, and the legs wernt flexed at all. So i took it off of her and fixed it myself the best i could and made an appointment to see a different orthotist, who gave us a much better harness(more comfortable looking too), and also said that I did an amazing job adjusting it, and that I must have done alot of research.. Addie seems to be doing ok in this new one, but they never told us how bad it was or anything, everyone has been very vague on ever aspect and its very frustrating. Also, I am having a hard time breastfeeding her, as I am a larger woman, and can't seem to find a comfortable position(any tips?) also, what the heck am I suppose to dress her in? Right now, I just keep her in tee shirts and socks, and then in a sleep sac for bed, but to go out, what can I do? any tips or tricks would be great, thank you all so much!

  16. #142

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    Witchymommy - my DD was in a Pavlik Harness from 7 weeks through to 5mths. Well done firstly on picking up the harness was not fitted correctly - that is just not good enough. I dressed DD in clothing that was generally a size bigger than what she would have been without the harness. I found seperates to be be good ie. t-shirt and leggings, dresses also work but I didn't really do a alot of dresses, romper suits also worked. On hotter days (and remember the Pavlik harness is like a layer of clothes so you have to be careful of not dressing too heavily) suits with no legs were perfect.

    Breastfeeding I actually had no problems with but that was largely because my daughter was so small and light (born 5lb 14oz) she was easy to move around.

    Feel free to ask any questions and I will try and help.

  17. #143

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    Hi Witchymommy - my daughter Scarlett was also in a pavlik harness from 3 - 5 months and at first they seem very uncomfortable in it. By the end Scarlett was quite a happy little thing kicking her legs out to the sides in her harness. I mostly dressed her is oversized dresses (which have been great this summer as they all fit her propery now!) we were also allowed to loosen the chest strap to give her sponge baths and I manages to thread a thin jumpsuit under her harness every time I gave her a bath. It was difficult but it stopped any rubbing from the upper straps.

    I also had a bit of trouble breastfeedind at first and people tried to give me adivce on what they thought were good ideas. My physio suggested holding her parellel to my body which was nearly impossible! You just have to try things out until something works for you. I used to lay Scarlett on her back across my foerarm and she twisted her neck around to drink. People said she looked uncomfortable but she continued feeding like this even when she came out of the pavlik harness and wen into a dennis brown brace.

    Hopefully everything will seem easier for you soon enough.

    Nicole

  18. #144

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    Hi Everyone!

    Withcymommy, good luck with everything with your daughter... i do not know much about the pavlik harness as my daughter was too old for that when she was diagnosd so shewent straight into the dennis brown brace... But one thing i have heard is that usually with pavlik harness healing time is faster?? Could be wrong but i think the younger they are when it is picked up the better... My daughter was just shy of six months and they said could take up to twelve months to fix but i have my fingers crossed at the next xray that she may be healing faster than they expect!

    In terms of clothing i found it really hard too at th start... i actually think summer clothes are much easier... my daughter lives in bonds rompers... they come in pretty colours and patterns and are really easy to change nappies etc and are thin so they dont overheat in warmer weather... In cooler weather i use leggings and a t-shirt or overalls that button in the crotch... if u know a dressmaker u could probably get them to adjust some of the clothes to put buttons or velcro on to make it easier...

    Anyway, good luck to all with their babies! I will update when i have had my xray!

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