Development Dysplasia (DDH)

lolli

Well Crumlin said that my daughter has developmental dysplasia. Her right hip is out really far so its going to hard to get back in plus her socket doesnt seem to be shaped right.

In four weeks or there abouts she has to go into hospital to have her legs put into Traction for 7-10 days (could be longer but this is the time they think) After those days they have to do a small operation on her where they will cut the tendons in her leg and try to get her hip back into place. After that they are going to put her in plaster of Paris from her Chest to her ankles. This will have to be changed every 6 weeks and she'll need to be knocked out everytime its changed. She'll have that on for 5 months approx. After that she might need to go into a brace and will need physio.

I'm just so so upset over this because she has already had such a tough start to her life after the Strep B meningitis. I just feel like life is being doubley cruel to her.

Just wondering if anyone else has been through this? What do we need to know.

Grawns

I'm really sorry to hear that lolli. It's not fair at all. I had a quick read on wikipedia and if caught early - which it has been, the prognosis for a full recovery is good.

I was in the cafe in the phoenix park the other day and there was another Mum there with her little boy in harnass, he looked to be around 7 months and seemed very happy in himself. Both my boo, my friends child and he were laughing at my friend frantically trying to see off wasps who were after her coke. ( doesn't happen with diet coke ) Anyway saoirse will handle this far better than an older child and won't remember it. I'm sure you will do everything possible to make it untraumatic and she will continue to have fun and grow and learn. x Grawns

Chuchoter

Thats awful, but at least as the other poster said she's so small it probably won't even bother her that much. I can't imagine doing it with a slightly older child, as they'd be used to moving around a lot. You might have already seen it but there is loads here about baby braces, traction etc. And all the kids in the photos don't look that bothered!

http://www.hip-baby.org/brace.html

lolli

Thanks to you both.

That website is very good. Shes going into traction first and then a Spica body cast.

I need to get a new car seat for her if anyone has any suggestions I'd be grateful.

Also where can I leave my Car? The last two times i've been there I just had to abandon my car in a housing estate.

Chuchoter

Apparently there is a specific car seat called spelcast designed for spica casts, but I can't seem to find anywhere that sells it.

lolli

Thank you so much, I'll have a look

Chuchu

So sorry for you all lolli, you really have been through the mill. I hope it all goes as well as it can from here on in. Keep us posted, and your little one is so young that she won't rememebr a thing and you will be the one more stressed out I'd say. (which isn't easy either needless to say):(

Das Kitty

Sorry for your troubles lolli. Soairse won't even remember any of this. Her parents will though! Take care. Xx

lolli

Thank you, I will keep you updated. I'm glad that she wont remember any of this.

lolli

Well, Saoirse is going into hospital this Friday. Dreading the thoughts of it.

janmc

lolli not sure if you found what you were looking for already, but there's a great website Steps - it's an English charity that has loads and loads of info, including an equipment list(click link and equipment list is about halfway down) - so car seats, buggies, clothing etc that will fit with the cast, and where you can get them. Apparently for small babies the Concord Ultimax is a suitable car seat.

Good luck to Saoirse

lolli

Well we are home.

Saoirse spent 11 days in traction, she was then brought down to theatre and her hip was put back in. She has a spica cast on her now which is going to be on for the next 18 weeks.

It has been tough!

Das Kitty

lolli wrote: »

Well we are home.

Saoirse spent 11 days in traction, she was then brought down to theatre and her hip was put back in. She has a spica cast on her now which is going to be on for the next 18 weeks.

It has been tough!

Aw lolli. Massive hugs to you and your Saoirse.

lolli

Thanks hun x

Grawns

That's rotten Lolli. Hope it passes quickly. Big Hug too.

Chuchu

Lolli thinking of you all, hopefully the toughest part is behind you now. Big hugs. x

lolli

Well Saoirse got a cast change yesterday in Crumlin. Was delighted it was changed because it really was starting to smell even though we keep washing her.

She sweats like mad in that cast. We have 4 weeks down and 14 to go eeek! We are going on a weeks holidays next week, I need a break. Saoirse is coming with me, going to go to Fota and just spend a few days relaxing.

Saoirse is very happy which is keeping me going

Das Kitty

She will looove fota!

lolli

Yup Das Kitty you were right she loved Fota

lolli

8 weeks in the cast now almost. Saoirse has dressings on her under the cast. Last week she started smelling really bad so we tried our best to clean out the cast with bread soda and water and dried her really well. We have been washing her everyday and she just smells so bad.

I got a flash light and tried looking up the cast and all around the dressings looked really dirty and sore and her back is red raw. I was terrified she had an infection so I brought her up to my doctor who said he just thinks its from sweat.

I left it a couple of days and I rang Crumlin Friday so i'm bringing her up tomorrow and they are going to check her out. I'm just afraid that something might be going on under those dressings. Shes not due a cast change until the 30th Nov but I thought better to be safe. I feel so sorry for her. I just want to put her into a lovely bubble bath!

Das Kitty

Definitely best to get it checked out lolli. Try not to worry about it too much though. James has been sick for the past couple of weeks and we haven't bathed him. He smells like cheese. Went to town on him with the wipes this evening. So it could just be sweaty stuff.

lolli

Hope James is better soon xx

Chuchu

Hi Lolli,
Hope you get to bottom of it and that there are no infections under there, and well done for getting so far 8 weeks already gone. I'm keeping an eye on your posts incase we're in the same boat in new year, and our little one just started walking it's going to be so crap if it happens....
Big hugs to you and Saoirse.
x

lolli

I certainly hope you arent in this position Chuchu because its tough.

Well went to Crumlin Monday didnt get seen until 7.15pm.. the clinic was just MAD! They said the cast needs to come off and asked if we'd stay the night but I couldnt because I had my Mam with me. drove back to Wexford

Had to get Saoirse up at 6am to feed her as she had to fast after that. She was taken down to theatre at 3pm. It was the first time I went in with her for the Anaesthetic usually her Dad goes with her but he was working. It was hard seeing her fight it.

They took the cast off and her skin was really sore and raw underneath so they decided that the couldnt put the cast back on. (shes supposed to be in it another 10 weeks) They have put her into a Brace instead so hold her legs and hips in place. She is covered in dressings mostly on her back, bum and inbetween her legs. Got home late last night and have to bring her back tomorrow again to get the dressings changed. I am so tired so I cant imagine what shes feeling.

Das Kitty

Just goes to show the value of a second opinion. I hope you let your GP know the outcome.

Wishing you the best. Xxx

DeadSkin

Apologies for raising an old thread........post maybe a bit long........but adding our 2 cents and experience of our little girl who was diagnosed with DDH at 11 months.
Hopefully it will help some folk out there.

Our little girl was diagnosed at 11 months with DDH August 2009.
How it was caught, was, we went for one of those developmental check-ups, nurse/doc noticed an extra fold in her skin on her inner thigh. Also one leg was shorter than the other. We were sent for x-ray[but had to push them to send us asap], within the week DDH was diagnosed.

Anywho, went to see the excellent Mr. Curtain in Galway, he looked at the x-rays and told us what to expect.
All in all our little girl spent approx 20 weeks in a spica cast. The cast was put on under anesthetic and changed twice, at week 6 & week 12 under anesthetic.
The first casts were just above her belly button down to her ankles. The last one was from the top of thighs to her ankles.

Last cast came off just before Christmas last year and we were told the casts didn't work.
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.

January

My daughter (nearly 10 months) has an extra crease in her left leg, we were at the Public Health Nurse last month for her hearing test and I got her to have a look at her hips, she wasn't overly concerned, but at 10 months she's till not bearing weight on her legs for any length of time or sitting up on her own for any length of time.

I think I'll contact my GP to double check.

Great to hear your story DeadSkin

lolli

Deadskin,

thank you so much for your story, I'm sorry to hear about everything that your daughter went through. it is so tough. She really has been through ther mill. I'm glad that everything has worked out for her now. It really is so hard seeing them go through so much.

I was in Crumlin on monday with Saoirse and her xray looked good, so she has to wear the brace 12 hours at night now and shes free during the day which shes delighted with.

its great to hear from somebody who has been through the same. you have obviously been through a lot. My daughter also got meningitis at 3 weeks old so its been a hard year.

Adrieanne deffo get your little Saoirse checked out xx my Gp thought there was nothing wrong either. Just ask him to get her xrayed in Crumlin.

January

lolli wrote: »

Deadskin,

thank you so much for your story, I'm sorry to hear about everything that your daughter went through. it is so tough. She really has been through ther mill. I'm glad that everything has worked out for her now. It really is so hard seeing them go through so much.

I was in Crumlin on monday with Saoirse and her xray looked good, so she has to wear the brace 12 hours at night now and shes free during the day which shes delighted with.

its great to hear from somebody who has been through the same. you have obviously been through a lot. My daughter also got meningitis at 3 weeks old so its been a hard year.

Adrieanne deffo get your little Saoirse checked out xx my Gp thought there was nothing wrong either. Just ask him to get her xrayed in Crumlin.

Think I will, I'm in the GP with Addison tomorrow anyway (she's not well , think it's tonsillitis) so may ask for a refferal for an x-ray!

DeadSkin

Thanks folks!

Yes it's tough, but we approached it that there's other kids and parents going thru' so much more everyday.
Yes we had our low points, but kids amaze you at what they can deal with.

There is very little support in Ireland for DDH, the day our little girl was diagnosed the doctor was excellent in explaining everything, but you leave there with a 10-15 page pamphlet that looks like it came straight from the 80's. It would've been nice if we could have contacted other parents that went thru' the same thing.

We were told that they wouldn't do the surgery until she was two, but we just kept pushing them and they brought it forward to the summer this year. We just wanted to get on with it.
That was the toughest part, she was in serious pain and it was so awkward to lift her.
We were told we would see an occupationalist therapist, who would call to our home and see what they could provide to help us out.
We only found out then, that we should have got a visit from the therapist the first week that she went into a cast last year :mad:
We were provided with a cool wooden chair with a big desk attached, where she could be strapped in. Her leg was supported by a Pampers box.

The Steps website is a great source for information.

We needed two different car seats, one for the spica cast and one when she went into the splint. I'll check later what brands/models and post them up.
When she was in the spica cast, we got a booster style seat from Argos that straps to the chair at the kitchen table which was excellent, again I'll find a link later. A beanbag is also worth taking a look at.
We also had to get different buggies, one for the spica & one for the splint.


@ lolli, all the best.
@ adrieanne__x, definitely push for the xray & good luck.

cynder

adrieanne__x wrote: »

My daughter (nearly 10 months) has an extra crease in her left leg, we were at the Public Health Nurse last month for her hearing test and I got her to have a look at her hips, she wasn't overly concerned, but at 10 months she's till not bearing weight on her legs for any length of time or sitting up on her own for any length of time.

I think I'll contact my GP to double check.

Great to hear your story DeadSkin

I got that done with my fella at age 3, hip xray was fine, his 4 in a few days and still has the extra crease, i can stick up a photo of his extra crease if you want me too. His always had the extra crease but we didnt take much notice until he was walking around in the nude.

He also had different creases down his legs like the baby in this photo

http://hairyfarmerfamily.co.uk/2009/06/11/itchy-and-scratchy/

I emailed his mother and asked her about his legs and extra crease's and there was no concerns (the little boy has other issues concerning his body his hyper-mobile)

We think our guys one leg might be a little longer than the other by less than a centimeter, and thats whats causing the asymmetrical creases.



A quick xray will do the job, im surprised you weren't sent for one. I phoned the phn and as soon as i questioned DDH i was seen by the area medical doctor and he was sent straight to the xray department and two days later ddh was ruled out and they no concerns. I might question it again when he starts school next year as i would like to know if one leg is longer than the other, (my hubby swears his one leg is longer than the other by around 1cm and his 5F 11 now)

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