Hi everyone,
I'm new to this website and very happy and relieved to find a forum with other mums and bubs going through the same thing.
I have a 6 1/2month old who has HD and has been in a brace for 2 1/2 months. I was told at the onset that she had a severe form of HD and that she would be in the brace for 6 months. Of course I was upset to hear this but thought as long as she doesnt have anything life threatening we would get through it. We have not been able to take the brace of at all not even for a bath which has been challenging through summer. But my little angel has taken to the brace really well and has been her same smiling self which has made it much easier for all of us
Yesterday we had the routine monthly ultrasound and appointment with her Orthopaedic Surgeon (OS) and was told that her hips are not improving and will need to have a procedure done in hospital to see if the hip is sitting deep enough in the socket and will need to be in a plaster cast for 6 weeks. I just burst into tears in the OSs office.
I am so sad about this and wanted to know if anyone has gone through a similar thing? We are waiting to get another opinion and am anxious about her being under anasthetic.
I hope someone can shed some light and support.
Caraash
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 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
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!
I don't know if this is still relevant to the way they do thing now days, but I was a child born with this hip condition and it is something that you have to keep an eye on later in life.
My hip problems resurfaced when I was a teenager as I was going through my growth spurts and I ended up having to have a couple of hip reconstructions to deeper my hip sockets. All is well now though and I am 28. I think my mum and dad must have gone through quite a lot with me as I was in the brace for two years! But it was all worth it as I can now walk perfectly.
I have also heard that I have an increased possibility of having children with this condition, but so far it hasn't been the case. I wish you all the best of luck with your children, it is a little uncomfortable at times, but in terms of problems with babies, it is definitely a manageable one.
Well its been just over a week now since we did the trek to Perth, this time to pick up the brace.
We arrived a PMH and poor Hudson started crying as soon as we got the the ortho floor... I guess 2 wks ago was still fresh in his mind. He cried while the nurse sawed his cast off - she was great, no pussy footing around, just got straight into it and it was over within 10 mins.
We then went to orthotics to pick up the brace. Hudson was measured and fitted and we were out of there just after an hour total! So we headed back home as we were all keen to bath Hudson.
14 weeks without a bath took its toll on his poor skin, it was all scally and peeling... like really bad suburn peel but thicker. Didn't hurt Hudson at all though which was good. Poor guy hated his first few baths, he's ok now but still hangs on to the side of the bath as I guess he is unsure of his balance.
We are allowed to remove his brace for an hour a day (bathtime), he's been really good about putting it back on too - I thought we would have a fight on our hands every evening but Hudson even asks for his 'shoes' to be put back on.
The Brace - its two pieces of plastic molded around each leg with a metal bar between the knees to keep his legs splayed out. The plastic goes from half way up his cast to just above his ankles. The plastic wraps around the girth of his legs about 3/4 the way around. Velco wrapped around the top and bottom keeps it in place.
The only annoying thing is because Hudoson still dragges himself around on the floor he keeps wearing through the rivets holding the bar on to the plastic, we have had to get extra rivets sent up and replace them all the time... he wore through the first ones in only a couple of days!
We go back in 6 weeks (4.5 to go) to have x-rays etc done so we can see how Hudson is progresssing and hopefully get told he can have the brace off for longer... fingers crossed
Hope all is going well - glad to hear the new bubs are settling in to their braces/cast ok.
Good luck Corelly - remember the next few days are the hardest, and things do get better! I found that I felt much better once the anticipation had become reality and I knew exactly what we were dealing with.
Let us know how you get on, but my thoughts are with you and your daughter
DD's op went well with the surgeon happy with how everything went. Most nerve-wracking wait I"ve ever had! She's waist to ankles in plaster and has settled surprisingly well for daytime - nights are another matter altogether. I'm finiding it really difficult, because she won't go to my husband, just screams and screams, and I've no family living nearby to fall upon. Last night I finally got to have some decent sleep at around 6am, and she slept from then to 10am. On top of it all, I have a cold, so am feeling miserable and having trouble coping in the middle of the night! Some family friends offered some support, offering to take her for a couple of hours, but then kindly informed me that they "don't do nappies". Real helpful. Everyone thinks that I'm just being brave and proud, thinking that I'm the only one that can do it, but with comments like this, what else am I supposed to do? Grrrrr.
But I figure, its day 4 already, over half way into the first week. She's booked in at the RCH on Tuesday for her MRI so hopefully that shows everything is fine. So it's just panadol for now and hanging in there that my beautiful girl will settle at night soon and we'll be speeding towards the day where we're plaster free.
Thanks for the chance to vent, and for all the support on this site.
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