Development Dysplasia (DDH)

Chuchu

Thanks Deadskin, haven't time to do proper post, puttin little one to bath and bed... but will dig this up again if our next apt in Jan is bad news, would appreciate the tips and advice if we are in the same boat as you were.
Hope Saoirse doing well lolli. x

DeadSkin

This is the booster seat, it's air cushioned;



Of course it does depend what type of cast and what position the legs are in. Our daughter was in a seating position for the first two casts, so that seat was perfect for the kitchen chair. You can bring it with you when you're out and about also!
Argos have something similar, Baby Polar Gear Booster Seat.

We found for the buggy, the icandy cherry did the trick when she was in the spica casts.

This car seat Britax Evolva 1-2-3 Felix did the trick for the splint as her leg was straight out. We pushed the passenger seat forward on the car & put a bean bag on the floor of the car, it was big enough to support her leg.

Cushions and loads of them for support!!!

Melion

Sorry to bump an old thread but i was sent this way. We found out this morning that Caoimhe has 2 dislocated hips and i really have no idea what to expect. Some of the things here have helped. The thing that makes it worse is that Caoimhes mother has said from the day she was born that there was something wrong with her hips and feet and kept being brushed off.

Das Kitty

That's awful Melion!

lolli

Melion I am going through it at the moment with my daughter so maybe you or you wife would like to pm me and we can talk by message or phone if you like. I'm back to crumlin on Monday again with my daughter

lolli

I must update this thread!

Saoirse is in her cast 12 hours a day now but I noticed after Christmas that her hip was clicking again so I brought her back to crumlin and they did an xray and they said everything is still fine.

I'm back up again next monday. My baby turned one recently!! I am still a bit concerned as she still wont put any weight on her legs at all. She can sit up for a while if you put her sitting up but she cant actually sit up by herself.

I suppose shes bound to be delayed with her hips and the meningitis!

DeadSkin

Melion wrote: »

Sorry to bump an old thread but i was sent this way. We found out this morning that Caoimhe has 2 dislocated hips and i really have no idea what to expect. Some of the things here have helped. The thing that makes it worse is that Caoimhes mother has said from the day she was born that there was something wrong with her hips and feet and kept being brushed off.

I know where you're coming from in relation to what to expect. Post up any questions you have or drop a pm. We felt the same way.

The doctor we dealt with was excellent, he explained best case and worst case scenario from the beginning.

lolli

DeadSkin wrote: »

Next step was surgery, an osteotomy, but not until July this year. Basically a bone graft to form a socket to put the joint in place.

It was tough, she was in pain for the first few weeks after surgery, but she was absolutely amazing[put us men with flu to shame]. The surgery left a cut of approx 4 to 5 inches, from the top of her hip down towards her groin. She was put in a cast & metal splint that ran from the top of her thigh to about a foot past her foot!!

Six weeks after that, got the cast & splint removed, x-rays were all positive and just recently went back for another x-ray and all looks good.

Tis getting late now, but I'll post up some more tomorrow about car seats and other support there is out there.

Looks like we are going to be heading down the osteotomy route. I wont know for sure until April but I feel sick thinking about it.

Grawns

Ah Lolli, It's just one thing after another at this stage. You are both due some really good luck. Maybe things will work out in April after all. Fingers crossed.

lolli

Thank you I appreciate that!!

Shes starting Physio next week so hopefully that will help!

Few set backs, shes delayed developmentally but sure she'll get there too

Das Kitty

lolli wrote: »

Thank you I appreciate that!!

Shes starting Physio next week so hopefully that will help!

Few set backs, shes delayed developmentally but sure she'll get there too

She's using all the energy she would have spent on physical development and spending it on mental development I'll bet.

lolli

Das Kitty wrote: »

She's using all the energy she would have spent on physical development and spending it on mental development I'll bet.

Oh shes as bright as a button

I was told her speech would probably develop faster because she would concentrate on that seeing as she cant walk.

DeadSkin

lolli wrote: »

Looks like we are going to be heading down the osteotomy route. I wont know for sure until April but I feel sick thinking about it.

Sorry to hear that. Better sort it all now than seeing a bigger problem a few years down the road.
It is very tough seeing them go thru' it all, but we were amazed with our little girl. The first few days after the surgery are really hard, she was in a lot of pain and moving her was really awkward.
Nappy changes were also difficult.

Get to talk to an occupational therapist.

I'll keep an eye on the thread and post up anything I think you may find helpful.

lolli

DeadSkin wrote: »

Sorry to hear that. Better sort it all now than seeing a bigger problem a few years down the road.
It is very tough seeing them go thru' it all, but we were amazed with our little girl. The first few days after the surgery are really hard, she was in a lot of pain and moving her was really awkward.
Nappy changes were also difficult.

Get to talk to an occupational therapist.

I'll keep an eye on the thread and post up anything I think you may find helpful.

Thank you I appreciate that. Just had such a hard year. She got meningitis at 3 weeks old. This hip thing has been going on since August so its just taking its toll you know.

She is starting physio next week. Was your daughter delayed at all developmentally? I have been seeing a few doctors/nurses etc re her development because she has been so behind. I know she'll get there in the end. Its just hard waiting for it!

How is your daughter doing now?

DeadSkin

lolli wrote: »

Thank you I appreciate that. Just had such a hard year. She got meningitis at 3 weeks old. This hip thing has been going on since August so its just taking its toll you know.

She is starting physio next week. Was your daughter delayed at all developmentally? I have been seeing a few doctors/nurses etc re her development because she has been so behind. I know she'll get there in the end. Its just hard waiting for it!

How is your daughter doing now?

I know the hip thing drags on, but you have to go with casts[and whatever other options] to see will that help it. Surgery is a last resort.

We weren't offered physio, but that's probably 'cause our daughter's hip socket never formed and the osteotomy was the only option.

Delayed developmentally, no chance. Non stop chat with a wonderful imagination.
She's flying about the place wrecking our heads, as any 2 year old should be

The next appointment is in June. Also, the scar she has, has diminished so much the past few months, I reckon there'll be very little evidence of it as she gets older.
Any other questions, do post them up.

As you said, ye'll get there in the end.

lolli

Sorry Deadskin I never answered you.

I'm going to Crumlin today. They should be telling us if she needs the op.

Im so scared about it. I am getting appointments everywhere for Saoirse!

I'll update when I get home.

*Fingers Crossed*

Chuchu

Hi Lolli,

How did you get on yesterday?
We will know in early May if we're to have the surgery.:(

x

lolli

Chuchu wrote: »

Hi Lolli,

How did you get on yesterday?
We will know in early May if we're to have the surgery.:(

x

Hey Chuchu.

The waiting game is really hard isnt it?

Well they did the xray, her hip socket still isnt right but they want to give it 6 months. Shes attending physio now and they have given us a stander which we have to strap her into. She wont bear any weight on her legs. She has started swimming too.

Shes behind in her development but we are seeing people to try get that sorted.

I really hope my little one or yours doesnt have to go down the majory surgery route.

She is out of her brace now at night. Thank god

angelfire9

Aisling had her 3 month visit with the PHN and she is referring her to the doctor as the creases in her legs don't match

I'm terrified they are going to find something wrong

lolli

angelfire9 wrote: »

Aisling had her 3 month visit with the PHN and she is referring her to the doctor as the creases in her legs don't match

I'm terrified they are going to find something wrong

I hope not. We noticed that one of Saoirses legs was longer than the other. The creases were uneven too.

Its better to catch it early and get it sorted.

Keep me updated x

angelfire9

lolli wrote: »

I hope not. We noticed that one of Saoirses legs was longer than the other. The creases were uneven too.

Its better to catch it early and get it sorted.

Keep me updated x

Thanks Lolli
I am wondering now whether I should try & get her to a specialist for a definitive diagnosis or wait til the 6 month check like the PHN suggested

What do you think?

lolli

angelfire9 wrote: »

Thanks Lolli
I am wondering now whether I should try & get her to a specialist for a definitive diagnosis or wait til the 6 month check like the PHN suggested

What do you think?

Saoirse didnt get treatment until she was 8 months old and at that point I was told that if it was caught earlier it would have been easier to treat.

I would go to your gp and tell them that you want an xray organised. If she does have DDH its a very long process. So they earlier you get it started the better. Is harder on a baby thats more active to be restricted.

I would certainly push to get it checked now.

Chuchu

I agree with everything lolli said, the earlier the better, we were told she might 'grow out of it' and she just went through the x-ray screening until surgery was the only option, the 'click' in her hip was noticed at birth and had she been put in a harness then it may even have meant that surgery was avoidable :mad:

No point dwelling on the past for our little one though, but do your best to push for yours now. They now do ultrasound screening for hips (this only came in last year, a year too late for us!) Having said all of the above surgery is rare and your little one more than likely will be fine, it's only a small majority that end up needing surgery. Hope this helps and good luck.

liliq

I don't really know anything about this stuff... but my boyfriends sisters little girl was caught very early (I think it could have possibly been at about 12 or 14 weeks) by their PHN (who had a rep as being a scaremonger, but fair play to her, she pushed them to get her suspicions checked out...)
They got the xray and checks (not sure of what exactly they did) all done, and she was put in a soft harness for what they were told would be up to 5 months. She had to wear the harness for 23 hours a day for most of the time, the last few weeks it's been 16 hours a day. She can still move her legs around, and after a couple of days of adjusting, she's not bothered by it at all now.
She's 7 months now, and I think at the last visit they were told she'll be out if it just after Easter, so she won't have had the full 5 months in it.
Definitely a huge benefit to her and them that she was diagnosed so early!

angelfire9

Going to my GP at 11.30
Will keep ye posted!

Oh and thanks for the advice guys!

angelfire9

Met with our GP
She did the hip exam and says she reckons there is no problem as there is no clicking but as the creases on her legs are not assymetrical she is sending me to see a consultant

Will keep ye posted!

DeadSkin

angelfire9 wrote: »

Met with our GP
She did the hip exam and says she reckons there is no problem as there is no clicking but as the creases on her legs are not assymetrical she is sending me to see a consultant

Will keep ye posted!

Our daughter didn't have the 'clicking' either. It was the crease and one leg shorter than the other, that led us to a consultant.
Chances are they'll do an x-ray. Hopefully you'll get good news.

the goon

Hi, my little pixie is 19 weeks old and has an appointment for an xray on Wednesday. She has an extra crease on her left leg but there is no discernible difference in her leg length. I am really nervous but since she seems to be able to bear weight on her little legs I am trying to be positive. I am just wondering if anyone can tell me how long it takes for the results of the xray to come through?

DeadSkin

the goon wrote: »

Hi, my little pixie is 19 weeks old and has an appointment for an xray on Wednesday. She has an extra crease on her left leg but there is no discernible difference in her leg length. I am really nervous but since she seems to be able to bear weight on her little legs I am trying to be positive. I am just wondering if anyone can tell me how long it takes for the results of the xray to come through?

Can't remember our daughter having a problem bearing weight on her legs prior to diagnosis.

X-ray was pretty obvious, very little of a socket present and the the ball of the joint was out of position, it was out and above the socket.
Hopefully you'll get good news Wednesday

lolli

the goon wrote: »

Hi, my little pixie is 19 weeks old and has an appointment for an xray on Wednesday. She has an extra crease on her left leg but there is no discernible difference in her leg length. I am really nervous but since she seems to be able to bear weight on her little legs I am trying to be positive. I am just wondering if anyone can tell me how long it takes for the results of the xray to come through?

Best of luck with the xray. We got the results straight away. they told us within half an hour exactly what they were going to do. My daughter never has and still wont bear weight on her legs and shes 15 months old now. I wish you all the best. Let me know how you get on.