Hip Dysplaysia Support Group #2

[Pandora]

Hi,

I found out yesterday at DS' 10 month check up that he may have hip dysplasia. Paed appt is set up for next week.
Im really not finding a whole lot of relevant info out there though, so if someone could send me a link or point me in the right direciton that would be great.
MCHN says he has conflicting symptoms - extreme hypermobility - his hips dont click at all but there is so much movement there, more than normal. When he sits from standing up he does a full split with his left leg for example and can turn both legs out (but does it more with the right)
sh thinks the rolls around his nappy area and thighs arent 'chunky' enough and that his hips are uneven (mine are too though, and I also have the hypermobility).

What should I expect from the paed appt? MCHN mentioned that they would probably order an u/s?

Sorry for the questions its all very confusing. Is it normal for it not to be picked up til this stage?

[MummyNaomi]

Pandora - hope all goes well for the appt, keep us posted! Given your DSs age, I reckon they might go for an Xray, as he is older and has more bone formed an Xray would likely give a better picture, I think ultrasounds are more used in younger babes. The paed will likely do a clinical check - eg turn out the hips and check for clicks, look at how even his hips/legs are etc but will be unlikely to confirm much until and xray or ultrasound is done, you will probably be referred to an orthopedic surgeon or specialist after the xray if anything shows up - are you in Melb? I know alot of our thread parents have gone through the RCH. My DSs dysplasia wasn't picked up until 5 months which is quite late, but it may be that IF your DS has dysplasia it is mild which is why none of the obvious signs have been there previously.
Also I highly recommend NOT looking to far around the internet as you will come across info from very mild to very severe cases and it can seriously do your head in if you try to self diagnose. A good page to read might be this one Kids health info for parents

GL - I know this must be a worrying time

Naomi

[Pandora]

Thanks for the info, I will chek out the link
Yes we are in melb.
I was talking to my physio who basically said hypermobility and hip dysplaysia were the same thing? I'm trying to to look at too much stuff..google is not my friend, yesterday I was convinces he had a tethered spinal cord
The clinic we are going through to see the paed will refer straight to RCH if they think there is an issue so that's good.

[MummyNaomi]

"Oh, she's not crawling yet, but she's nearly one"

OMG Corelly - I'd want to smack them in the head - how insensitive!! I absolutely HATE it when people comment on babies progress etc, I have learnt since being a Mum that a babies development is soooooo individual normally anyway, let alone the differences being braced months on end also creates. Next time someone says something reply "Oh, so you haven't developed common courtesy yet, but your nearly (insert appropriate age here)" hehehehe. I hope DD has a wonderful birthday this weekend - how are you celebrating? What an exciting time! I am in full birthday-plan mode atm, have sent out invites, we are having a combined 1st Birthday/Naming Day so I am meeting with the celebrant tomorrow to work through our ceremony, very exciting!

Josie - we are in a DB brace also, the only other thing I can recommend is that we actually had a thin toddler pillow for our DS that we had under his head and shoulders as well as the rolled up blanket under his legs, this seemed very comfortable for him. I recall reading that another idea to try to increase comfort is to put a doona or something under the babies bottom sheet (almost to create a pillow top effect) and this increased the comfort factor, but you don't want it to be to soft that they sink in to it too much as then you'd create a SIDS risk. Although my DS sleeps pretty much 12-13 hours over-night, its not uncommon that I may have to resettle him a few times, even if its just with the dummy, I think sometimes the brace stops them from shuffling around to find a comfy position and wakes them unfortunately. I agree with Corelly, sleep when-ever you can. Or co-sleep if thats something you want to do, we find this helps on very unsettled nights.

We are going well, I've returned to work so DH and DS are enjoying their time together as DH is currently as SAHD until July. Bailey will be out of his brace in time to start childcare which was my goal so I am very happy about that. He is getting around with his bum shufflely crab like movements, or backwards crawling (more just pushing himself backwards), no commando crawling here, just leaping on things from a sitting position. We have 64 more days in the brace, I really cannot wait, I have bought a few outfits for Bailey that he will be able to finally wear - very exciting!

Best wishes to all our DDH familes out there

Naomi

[MummyNaomi]

The clinic we are going through to see the paed will refer straight to RCH if they think there is an issue so that's good.

I'm in Adelaide so haven't obviously gone through RCH but from all the reports from Victorian members they are awesome and will take excellent care of your DS if needed so great that you have access to their services

Yeah the internet can cause more worries, rather than provide the simple info you need so you really need to read everything with a grain of salt. I had myself convinced that my DS would need surgery or worse . His case is moderate and our treatment is a dennis brown brace for 6 months (we are 4 months in), but in the early days it was just devastating.

Hopefully the time until your appt will go quick, waiting can do your head in

ETA - not sure if hypermobility and hip dysplaysia are the same thing, I've never had hypermobility mentioned to me from our specialists, sorry

[Miss.September]

"Oh, so you haven't developed common courtesy yet, but your nearly (insert appropriate age here)" hehehehe.

Hahaha Naomi - you always know how to make me feel better. Love ya! How exciting that Bailey's only got 64 days left in the brace. He's doing things that DD still can't do, so once he's out, hope you've got fast running legs to chase him as he bolts away! We're having family day on Sat for DD's birthday, a quiet bbq with 15 immediate family at home. We've bought her a sandpit, some books and some musical instruments so hopefully she'll love it all.

Pandora - good luck with your appointment and I agree with Naomi - don't google! I'm in Melbourne too and our surgeon has been absolutely fantastic. When we saw the paed when DD was 7 weeks, he just ordered an ultrasound because he couldn't feel anything unusual in the examination. Once the ultrasound came through, we were instantly reffered to our surgeon. RCH are nothing but professional too and lovely caring people. DD has a new issue (groan, non hip related) that she needs an ultrasound for so we're off to RCH again and I so much faith in them. If there is something that needs further investigating, they're the ones to do it.

Corelly x

[smarti]

Hi everyone

I haven't been here for ages but its nice to read some comments from the faithful regulars (!) as well as some newbies!

Our DD was 11 months on the weekend and has been in her rhino brace for almost 9 weeks now. We had our first follow-up appointment with ortho last week and he was happy with the position of her legs in the brace (viewed by x-ray) but said it was still too early to tell how long she will need it. In the first instance, he said a minimum of 6months. So many people have since said to us things like 'oh we had a friend etc.. who's baby had to wear that for 12 months'. Love the positivity!

Anyway, I guess the good thing is that we have been incredibly luck and she hasn't made a fuss about the brace. She even still sleeps on her side - with one leg stuck straight up in the air! Looks uncomfortable, but she doesn't seem to mind - bizarre!

For a month now, all she wants to do is walk along holding hands. This is terrific of course that she can manage it, but my back is getting sore! I also think some serious frustration could set in soon as I don't see how she will be able to walk solo - the brace creates of a bit of a pelvic tilt and of course her legs are so wide apart!

Hope everyone else out there is going along OK with various casts, braces and other hip issues! It's great to have this forum for support and to bounce ideas and experiences off one and other.

x

[crosswig]

Hi everyone,

It has been a while since I've posted but I admit that I have been in hiding with my head officially in the sand.

For those who are newer to the forum our DD 2 was diagnosed with hip dysplacia at birth and went into the pavlik harness at about 2.5 months for a period of 3 months. At DD 2's first review (after she had been out of the brace for 3 months) with the paed he said he thought her hip was still lax in the joint and sent us to see the paed othopedic surgeon. Of course it took us a month to get in to see him so I've spend the last month worried and was trying to work out how bad - brace or cast - it would be. Everyone will know that sick feeling.

The paed ortho had requested another x-ray and specified the von rossen position - legs at 45 degrees not down. Apparently it is harder for older babies to wriggle in that position and give a false positive. The examination went well and the new x-rays showed that her hip is in the joint and the angles are good. Our little minx had wriggled in the first x-ray making her hip look bad. The paed ortho is going to use our x-rays for when he talks to paed to show how x-rays can show a false positive.

The best news of all is we don't go back to the paed ortho untill DD2 is two years old.

Hope you are all well,

Crosswig

[Miss.September]

Crosswig - That's fantastic news! You must be over the moon!

Smarti - How cute that your DD sleeps on her side. It's a hard thing to see, but they somehow manage to cope. I'm sure she'll figure out a way to walk solo, but it's awesome that she can, even at the expense of your back. Maybe DH can give you some massages. Maybe all of our DH's should!!!!!!

It's been about six weeks since we've been brace free. DD has learned how to stand up and the other day showed us that she can actually crawl "properly". Her preferred method is still commando crawl, but hey, she can do it so I'm pretty happy about that. Got our next surgeon's appointment at the end of May, and there's a little bit of anxiousness there, naturally, but I'm hoping that because DD was in the brace for so long that it's well and truly behind us.

Corelly x

[wysiwyg]

Crosswig - Just wanted to say when we were at airport not long ago, we saw a little girl walking in a brace unaided - we were amazed.

[leils]

Hello, I ave just found this forum and it feels reassuring to know the emotions I am feeling are shared by others.

My beautiful 2 week old girl was fitted with a DBB yesterday and I can't believe my soft little bundle is now this difficult to cuddle brick. I feel I have lost the chance to have her be a newborn. My son had a very difficult infacncy, and my daughter had been the complete opposite and I was loving having a newborn around.

I know that this is for her future and of course I didn't need to think twice about the need for the brace, but I feel I have lost something and I am glad that others on the forum have felt this way too. I feel incredibly selfish for feeling this way, hopefully it will pass over the next few days as I get more used to the brace.

Sorry to use my first post for a whinge, but I really needed it.

[crosswig]

Liels,

Welcome to the forum. I'm glad that you found it. As well as the support one of the best things for me was following everyone and hearing their happy endings. Helped me hold onto the fact that there was an end in sight.

This first little bit is tough and there is a feeling of loss that you have to work through. If you need to have a vent feel free to do so here. Everone here has had their bad days and everyone understands.

Corelly, best of luck for your next appointment.

Smarti, that sounds so cute!

Crosswig

[Miss.September]

Leils - Big hugs to you. It IS the hardest thing to have this beautiful newborn to hold and then to have them tied up in metal or plastic and it's rotten. There's no other way to say it. The rollercoaster of emotions that comes with it, especially for you with your hormones still coming down, it's just awful. Keep coming in here and talking about it, good days, bad days, you'll get loads of support. I found it to be invaluable when nobody else understood what I was going through and until I found this group, I felt like I was the only one looking at my beautiful daughter in such a way.

I hope the transition into the brace goes quickly for you and please don't feel selfish about the way you feel, that you have lost something. My DD went into her first brace at 7 weeks and I too felt so robbed of that beautiful little bundle that just moulded to me, instead to have a baby at strange angles. Don't feel bad for the way you feel, just feel it and vent it out and we'll support you the best ways we can.

Corelly x

[Miss.September]

Thanks Crosswig - how's DD2 travelling?

Wysiwyg - It's funny to see another bub in a brace, must have been pretty cool to see that baby managing to walk in one. I bumped into a lady in the shopping centre carpark with her 4 year old daughter who pointed out my DD and said "That was the brace you were in honey!". We had a brief chat and she said that her daughter hadn't looked back from the day she'd come out of it. There's hope for us all!!!!

Mummy Naomi - How many days?!?!

Corelly x

[crosswig]

Corelly,

DD2 is doing really well. Once she got out of the brace she started rolling over really quickly. She does an ultra quick leopard crawl and is just starting to do a 'proper' crawl when the surface is a bit rough for her. DD2 now LOVES pulling up onto things and standing by herself although she gets sooooo mad when she can't get down! It is so funny to watch her as she just has no fear at all.

Crosswig

[leils]

Dear Corelly and Crosswig,
thanks so much for your words of encouragement. Our journey is just beginning, but already I feel a litle better. My daughter seems to be adjusting well to the brace, and I am figuring out how to bath her etc. So it's not as difficult today. Yesterday was a bad day, but having your support was wonderful.

Will keep checking in aswell as follow everyone elses travels
Leils

[bridee]

Hi All,

Free to a good home

I have some home made babylegs (baby leg warmers) for anyone that would like them. I used them under DD2 DBB to help prevent blisters. They are in pink and white colours generally. If they have to be in the brace I say at least let the cuffs be a jazzy!

They may be useful for other types of braces but I know they were good for the DBB

PM if you would like them and I will send them to you (first in will get them).

Haven't been in for a while but just to give everyone some light at the end of the tunnel. DD2 was in DBB for 6wks from 12-18wks, her hip dysplacia was mild but never the less was in the brace. Anyway she has started walking at 10mths so time in a brace does not mean they will be behind.

[Miss.September]

Bridee - DD2 walking! That's awesome!

Leils - Good to hear that your DD is adjusting well. Hope you're still okay with it all.

Corelly x