Naomi - we've got eight more sleeps of the brace, thank god. Last night she was up FOUR TIMES!!!!! ARRRRRGGGHHHHH. And DH was snoring like a chainsaw so my head is full of the fuzzies today! On another note, I promise you that when Bailey is out of his brace I am going to send you some cargo pants to celebrate!
Jesska - thanks for the kind words for my nan. I don't quite know when its actually going to sink in. Great news on Lahni with her hips. Sometimes I wish that the doctors would tell us what they're thinking, but I agree with you - if my doctor was really worried, I'd prefer to not know. We didn't know that our surgeon believed DD was in the worst 10% until the day the brace came off and that was a good thing. Didn't need to have that on my shoulders.
Hi, everyone. I'm new here...is there room here for a Yankee? (I live in California. ) I was really happy to find this forum as I just found out that my son (Sam, 2 months old today) has to wear a Wheaton-Pavlik Harness for acetabular dysplasia. We are lucky that his displasia is likely very mild (diagnosed with u/s), as I've read many of your stories and know that things could be much more difficult. Because it took so long to get him the right appointments (grrrr...), he'll likely need to wear the brace for several months. He only cried a little when they first put it on him today and he zonked out in the carseat on the way home and is only waking up now, so I'm hopeful it won't disrupt his sleep too much, but I guess time will tell. Like a few of you, I am sad that my days of cuddling with my newborn have so abruptly been cut.
Mainly, though, it's the unweildy-ness of the harness that is stressing me, mostly with regard to nursing him. Has anyone successfully breastfed a baby in a Pavlik harness while laying down in bed? BFing was hard at the beginning (he has a really hard latch) and is only just getting comfortable. I was so excited to successfully nurse him lying down last night (first time) because it meant I'd be able to get a little more sleep (as opposed to the two hours at a time I've had for two months now). Now I think I won't be able to do so because I can't keep his hips in the proper position while laying down.
Any input would be appreciated. Thank you guys SO MUCH for having this forum!
I can breastfeed my daughter lying down - she's in a rhino cruiser brace and she can lay on her side in it. I'm not really familiar with the brace your son is in, but I'm assuming that their legs are all splayed out the same no matter what brace they're in. Maybe try laying a cushion or a small pillow under him to relieve the pressure off his leg? My DD went into her first brace at 7 weeks and I too had just gotten the hang of breastfeeding, only to have to change her position all around once the brace went on. But we're still going now, and she's nearly 11 months old. Good luck with it.
Keep coming in and asking questions, or share your stories and achievements, bad days too. We've all been there, are there and have those days still to come. This group has been a fantastic support for me - I don't know what I'd do without the knowledge and the shared experiences here. I really feel for you having your newborn days cut short. It really really sucks.
Hi Quilla - my DD went into a Denis Browne brace at 7 weeks (which is very similar to Pavlik in positioning I believe) - here are some pics so you can see
She has been out of it since Nov now but just wanted to say that I still managed to feed lying down the whole time she was wearing it. She sort of just twisted her top half and her bottom half stayed flat IYKWIM, in fact she still feeds like that laying down even though brace is off. In the beginning I wedged her up a bit on the opposite side with a pillow, but she didn't seem to need it so stopped. I must say when she first got the brace on not being able to feed lying down was also the thing that worried me the most, but worked fine. So I just started with her laying flat on the bed next to me, me on my side with boob lined up to where mouth would be and then she would just turn her head/chest - she fell asleep fine like this too.
Hi Quilla - welcome! Sorry to hear about your DS, it's very hard at first...
The only other position I could suggest is the way I cuddle my DS in close to me, I recline myself so I am practically laying on my back and he lays across my chest/belly - almost on his tummy but slightly on his side, and snuggles in, the brace doesn't hinder this position (we are in a denis brown brace though), but this position may be one to trf for BF? If it doesn't work for BF it is a good one for getting in those precious skin to skin cuddles
Quilla - DD1 was in a pavlik harness from 7weeks I breastfeed her holding her in my lap so no experience laying on a bed but my thought would be it would be possible if your son could lay on his back and turn his upper body/neck. I wouldn't be laying him on his side. With a pavlik harness while the straps do stop movement it isn't the same at other braces. DD2 was in a DB bar and that was certainly more rigid than the pavlik harness.
Thank you so much, everyone! Wysiwyg, thanks for those pictures...cute baby! The Pavlik harness isn't as rigid, like bridee said. Lying on his side would not keep his legs in the proper position. (In fact, I can't figure out how the Pavlik is supposed to help?) The idea of having him lay on his back and turn his head might work soon, but I think he's too little for it right now. For cuddling, it seems to work best to hold him upright on my chest, facing me with his legs splayed.
He had an okay, but not great night. He does settle down, but it seems he cries more/more vociferously than he did pre-brace.
I guess I just have to hope that soon he'll be old enough to lengthen time between feedings so I can at least get a little more sleep. I'll try experimenting in the meantime and will let you know if I come up with anything!
Quilla - hope everything is working out for you in these early days of the brace. Fingers crossed for you.
Well we have four more sleeps until the brace is off for good. We cheated one night last week, and left it off. DD broke out in a scary rash on her leg and when it jumped to the other one, we took off to the RCH to get it checked out. After being told at midnight it was still a 6 hour wait, the triage nurse kindly had a quick look, told us it wasn't one of the bad rashes, and we'd probably be fine if we saw our GP, so we went home. I left the brace off, not wanting to irritate it further and DD slept ALL NIGHT. The rash was gone by morning and we've behaved ourselves with the brace since, even though we've had rotten sleep. The saddest part about our visit to RCH was when we thanked the nurse for having a look, and she thanked us back for not swearing at her. I felt awful for her. They do a great job, and there's only so much they can do at midnight!
We are going well, Bailey is getting rather adventurous with his efforts to get around the place which is exciting, but rather clumbsy, so there have been a few faceplants, headbutts and tears, but it's all for the greater good, I try to protect him from the ouchies as much as possible but there is only so much you can do, he'll soon work it out. He is sooo flexible, it really freaks me out. His latest trick is to get on one leg (so one foot flat on the ground) and then balance on the other knee, so he can reach forward for something out of his reach, but as he reaches forward he over balances because the brace stops him getting into the position he wants and 'kaput'. We've had lots of walks around the house to distract him after he takes a tumble. We have lots of tiles, so when he ventures off the rugs I keep a very close eye as I am a bit worried about him smacking his skull on the tiles
Naomi - You must be so excited at Bailey's progress, but the tiles would freak me out too. We've got floorboards, well, the fake stuff anyway and DD loves the feel of the different texture from the rugs and seeks out floorboard spots all the time. How long have you got to go in the brace and can he come out for any longer than the half hour yet?
Quilla - How are you going with BF? Hope you guys are comfy with it.
We've got two more nights with the brace and then we'll be free. I'm tired and although soooooo looking forward to the brace coming off, I know we'll have a few restless nights while DD gets used to it. Monday we go away, and each time we've slept away from home, its been a really difficult night the first night, so I know that I'm going to be stuffed. Will be worth it though
Hi Everyone, what a great discussion group, I wish I had know about it before!
I am expecting my third baby in April and am looking ahead to where is the best hip specialist/clinic in Melbourne (we live in Pakenham so on the East side if possible but open to all suggestions).
I may sound like I am jumping the gun but I have had two breech baby boys, the first had his hip dysplaysia picked up at 3 days and went into a Pavlik harness at 5 days, he was all healed up by 6 weeks. My second son was scanned at 6 days old and he was borderline so I had him in thick nappies and he was OK by his 6 week check.
This baby is a girl and I know that has a higher risk factor, she is not breech but given my previous history (of my babies and me who had a brace on from 4-14 months), I am not leaving anything to chance!
I need to plan ahead as to where I can go for an early check with a specialist, I am planning a homebirth so I will need to go to a paed. first I guess to get a referral and would love to have the details of where to go at hand. I don't have any intention of leaving it for 6 weeks to get her checked as my GP suggested?? Or can my GP just give me a referral straight to the hip specialist.
Sorry for all the questions, my first babies were born in the UK so the system is different.
It's been a long time since I checked this forum as I hadn't updated my subscription to the new thread so I've been missing out on all the news. For those that I haven't met - hi. A quick recap - my daughter Scarlett was diagnosed at 3.5 months and wore a pavlik harness then dennis brown brace full time for 3 months then only at night until she was 22 months. Her coverage is perfect but orth still has concerns and we continue to have annual checks (next one in Aug when she's 3). Second child Xavier was screened early and after an initial 'bordeline' result has now been given the all clear. He's almost 7 months and id=s starting to get into all his sister's toys. Watch out!!!
I love reading about everyones progress as it takes be back to the time when I was going through all the same things. I sometimes forget what a struggle it was at times as it just seems like a distant memory.
The stories of how children cope so well through adversity are particularly reassuring to me at the moment as my poor little darling is about to start on treatment for another medical problem that I'm not so sure she will like but I'm sure she will get through it.
We had our appt and xray todayh - Bailey's hips are showing obvious improvement - His left hip acetabular angle has improved 4%, the right (which was the worst) has improved 6% - Both hips angles are under 30% (which was what we needed to avoid the brace), However as there is still bone to be laid down and growth to occur the ortho has recommended that we stick to the 6 months to ensure the improvement continues and no deformity of the hip joints/angles occurs - but 6 months is the maximum! We can take the brace off on May 23 and we go back to the ortho 3 weeks later for an xray and to see how the hips are going out of the brace.
I'm super happy today - I was really counting on some good news and we are soooooo happy that the brace is doing what its supposed to and 6 months will be the maximum - Bailey will be 13 months old on the day the brace comes off
Hi, sorry I've been a bit quiet but have been looking in to see how everyone is doing from time to time. We've been lucky compared to some and my son has only needed a DB brace for nights and day time naps. However, in some ways I wish they hadn't debated whether he needed one so much early on and just done it straight away. But like someone on here said, its good to have it if it does them good. Seeing some Mum's in the waiting room for the hip clinic with 2-3 year olds with issues it is good to have it fixed when they are so little.
We went back to our specialist a week or so ago and after the x-ray and check up are now brace free. The x-ray was funny (our first one as now over 6 months) as my son just won't lie still for anything and they put these weighted bean bags over his arms to hold him down. He just looked so shocked at being unable to roll around.
We'll go back in 6 months to see how his hip has developed on its own but they felt now was the time to let that happen. If thats good, then 5 years old and then thats it.
So we've been looking forward to more peaceful nights being brace free and no more issues of legs trapped in the cot bars etc. The trouble is he is now 8 mths old and thinks its great to sit and stand up in his cot now instead of going to sleep. Even the sleeping bags don't seem to hold him back much, though they are definitely better than not even though he still traps his legs through the bars with them on!
Hope all continues to go well with you all and look forward to hearing the updates.
Karen
Yaaaaaaaaaaaaaaaaayyyyy Naomi!!! Great news! Sorry it took so long for me to reply - just got back from hols today and was very excited to see your post!
Nicole - great post. Love reading about kids that have been through this and are still going strong. I hope Scarlett's new medical problem sorts itself out soon.
DD went really well on our trip away. She was brace free two nights before she went and while we were away she commando crawled EVERYWHERE!!!!! I don't know that she'll actually crawl though - she stands on her toes and hands, instead of hands and knees so it'll be interesting to see what she'll do. I got a fright on day two though - I'd put her in her cot so I could make the bed and she chucked a wobbly so I ignored her, but when I turned around and looked at her, she was standing up!!!!! AAHHHHHH!!!! Hadn't done that before and hasn't done it since, but was pretty cool!!
Well we've been brace free for almost a month now and hit an interesting "thing" that I wasn't prepared for.
If one more person says to me "Oh, she's not crawling yet, but she's nearly one" I'm going to flatten them!!!!!!!!!
How quickly people forget what has happened to her. These are people that know her and know the journey we've taken. It's already a worrying thing to hope that they'll crawl and walk, knowing deep down that they will, but having that irrational fear that they won't, without these stupid comments as well. Has this happened to anyone else??
Hope everyone's babies are going well in the various spicas and braces.
I am new to this blog, but my 4.5 month old baby, Lucy, got a DB brace on monday for her left hip dysplasia. The doctor/physio and orthotist all told me she would adapt really quickly. She is fine when she is awake but has hardly been sleeping at night. We have had a week of no sleep! She was a brilliant sleeper before. Is this going to settle soon? Has anyone got any suggestions? I have been giving her panadol, have put a pillow under her legs and nothing seems to work. I am going crazy from sleep deprivation.
Would love to tell you that the sleep issue will be fine, but I'll give you hugs instead
We found that after our first initial week of having the brace on, DD settled into a sleep, where she wasn't out all night, but we only had one or two wake ups and this continued throughout much of the time she was in the brace. I wish I had some better news for you. Try to sleep when she does during the day. I know I did on those days where I was fuzzy and bleary eyed and it did make the world of difference.
) I was really happy to find this forum as I just found out that my son (Sam, 2 months old today) has to wear a Wheaton-Pavlik Harness for acetabular dysplasia. We are lucky that his displasia is likely very mild (diagnosed with u/s), as I've read many of your stories and know that things could be much more difficult. Because it took so long to get him the right appointments (grrrr...), he'll likely need to wear the brace for several months. He only cried a little when they first put it on him today and he zonked out in the carseat on the way home and is only waking up now, so I'm hopeful it won't disrupt his sleep too much, but I guess time will tell. Like a few of you, I am sad that my days of cuddling with my newborn have so abruptly been cut.
His latest trick is to get on one leg (so one foot flat on the ground) and then balance on the other knee, so he can reach forward for something out of his reach, but as he reaches forward he over balances because the brace stops him getting into the position he wants and 'kaput'. We've had lots of walks around the house to distract him after he takes a tumble. We have lots of tiles, so when he ventures off the rugs I keep a very close eye as I am a bit worried about him smacking his skull on the tiles 
Sleep!!!
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