Hip Dysplaysia Support Group

[nicoli]

The news was not bad but not great either. Since Scarlett is still OK with wearing her brace at night, she has to keep it on for as long as she will tolerate it until she's 2. The doc said she showed a slight improvement which was a good sign, but there is still a 50/50 chance of an operation before she goes to school. At least it has improved...

[minimatron]

Hey Nicole, am sorry to hear the news that Scarlett still has to wear her brace at night. I think that was the hardest thing for us too, coz they would be free all day and then you put it back on. Am hoping that her hip improves so that she doesnt need an op, seems like you have been going through this for a long time. All the best
Melissa

[nicoli]

Thanks Melissa - yes Scarlett has been in this brace alone for over 12 months now. I was quite happy with the outcome though, as she is still quite cheerful having her brace put on at night. It is part of her bedtime routine. Now I'm trying to decide if I should put her in a big bed now that she will still have her brace on for the next 6 months...

[aegmusc]

Hi all--My 5 weeks old has been diagnosed with left hip dysplasia and was placed in a pavlik harness today. Problem is, the ultrasound they used to diagnose was from when she was 3 weeks (and she was born early so it corresponded to her actual due date) and they didnt repeat it. They said it was mild but that they just generally treat all cases to be safe. I didnt love this idea but went with it...until 4 hours had passed and our usually sweet temperament baby had not stopped screaming (a painful sounding scream/cry I had never heard her make before). She hyperventiliated and only stopped for a few minutes here and there when she exhausted herself and passed out. Then would open eyes and start screaming again. I couldnt take it and scheduled an appt for a 2nd opinion for Wed. and removed the harness. I feel like a terrible mom b./c if she needs it I know she has to be in it, but I just felt like something was wrong...So, here are my questions for those of you expereinced with this.
First, how long should I expect it to take for her to adjust (stop screaming/crying) once fitted in it? Online it suggests most babies adjust quickly to it, but she clearly was not or I have different idea of "quickly".
Second, how do I dress her with the harness on? It is a cold winter here and they said most people just put her in a onesie and sack, but usually we also swaddle her, which they said we cant do anymore...So, can she wear pants? Can they go on under the harness?
Third, how long does it take for the mom (me) to stop feeling so sad about it? I cant stand hearing my daughter cry like that and have been in tears all day.
Thank you so much to anyone who might be able to help---Amie

[MonicaP]

Hi All,
Nicole- I hope all goes well with Scarlett and the hip keeps improving so she doesn't need the surgery.
Amie- Hi and welcome! I felt so sad for you when I read your post as I understand exactly how you feel. My daughter Hayley was diagnosed with dysplasia of the right hip when she was 4 months. She had to go into a spica cast which has now been on for almost 3 months. When she first came out of recovery when it first went on she screamed for hours like we had never heard before. She finally fell asleep for about an hour and then woke up and began screaming again. This went on from 2pm until 7pm. We were supposed to stay in the hospital overnight but after her CT scan the doctor told us to take her home because that might settle her down. All the first night we were up with her constantly because she was so upset. By the next morning she had stopped crying but was not her normal happy self. However after about 48 hours she was back to her normal self and had completely adapted to the cast. It took myself and DH alot longer to adapt. I was an absolute mess in the hospital to the point that the cast technician rang me the next day to see if I was ok. I cried alot for the first few days but as Hayley became happy and adapted to it I began to feel better and slowly we just adapted to it as well. I still can't wait until it comes off but it does become easier to accept.
I'm sorry I can't help you with what to wear as we can't take her cast off and it is summer at the moment so she wears dresses and bodysuits that button up at the nappy.
I hope this is of some help and my thoughts and best wishes are with you!
Monica

[nicoli]

Hi Amie

My daughter Scarlett was in a pavlik harness from 3.5 months for about 2 months before going into her current brace. The first night wearing her harness was a nightmare. We were expecting it to be bad, but shortly after having the harness fitted int he hospital she fell asleep in her pram and we though maybe she would just accept it without any fuss. That was until we got home. The first night she screamed constantly. Like you were saying she was exhausted and would wear herslef out from crying so much. She would close her eyes for about a minute and then when her natural impulse to move her legs kicked in she would wake up screaming. My husband and I wanted to take it off because we felt like we were torturing her. We couldn't get her to sleep no matter what we did. We even called Tresillian becasue we wanted to get someone else's OK to take it off, but they said not to so we persevered. We took shifts in the loungeroom with Scarlett in her pram with a folded quilt undernieth her. We thought the soft quilt might help her feel more comfortable. We had to contantly rock the pram or she would keep screaming. She ended up falling asleep at about 2:30 in the morning and slept for a few hour. It was a terrible night. After that she slept in the pram in her room for the next few nights so she could get used to the brace and then I gradually moved her to her cot with the quilt under her in there. I know it is against sids rules, but it was the only way she would sleep. It is hard on the parents seeing their babies like that - especially one as young as yours - but after a few days they do get back to their old selves.

As far as clothing, we were lucky that Scarlett was in her harness during summer. We were told we could only undo the chest strap to sponge bath Scarlett and with great difficultly we managed to thread a jumpsuit under the harness without removing it. We had strict instructions not to remove or adjust the shoulder or leg straps so I think putting pants on underneith would be out of the question. I have read that other people bought realy oversized elasticised waist pants to put on over the harness. I had some leg warmers and big socks that fit over her feet to keep her toes warm. I was also told the same thing about wrapping, but I did it anyway as she was already so used to it. I just wrapped her top half and left the wrap open at the bottom.

We all know how you are feeling and since you took the harness off a second opinion can't hurt, but be prepared that she might have to be in the harness to fix the problem. The short time you will both have to endure it will be worth it in the long run. You are also lucky it was detected so early as the eralier it is treated the better the results. My daughter was diagnosed quite late and is still in a (different) brace at night at 18 months old. In the early days I was counting down the days to when I thought we would be free of the harness and I used to cry alot, but it just becomes a normal part of life after a while. Soon enough you will look back and be amazed at how quickly it goes.

Sorry for such a long post...

Nicole

[minimatron]

We had Rebeccas ultrasound today. Her left hip hasnt improved since the last one 6 weeks ago. The right hip is completely normal, the left has a shallow cup, but apparently stable. Makes me wonder what they will do for treatment if any. I was really hoping for a good result today, but it is what it is. I suppose I have enjoyed this far with her. Olivia was in her harness from 5 weeks of age, Becca is now 3 months old. I'm so miserable and its bringing up those feelings again. I cant understand why I breed kids with hip problems. And both of them have had foot problems. I know I should be thankfull that its nothing else, but it still doesnt make things any easier. If she has to be in a harness... at least I know what I am up for, its just the waiting tl its all over bit that I hate.

Thanks for listening!

[nicoli]

Hi Melissa

Sorry I only just saw your message - I haven't been getting email notifications.

I am sorry to hear that Bexxa's hip has not improved. I know what you mean about feeling like it's yor fault or something. I am worried about my unborn child having the same problem too. Our orth told me I won't need to get an ultrasound until 6 weeks when the baby is born but I feel like I'd be paranois if I didn't do it sooner.

Like you said you know what to expect if Becca has to go into a harness. Hopefully things improve soon.

Nicole

[minimatron]

Thats ok Nicole! I was really paranoid too about not getting that first u/s until she was 6 weeks. It felt so long away and time wasted, iykwim? Both my girls get my crappy genes, my dh has really good health and family history and mine is crap. I have asthma, eczema, allergies hips.....Olivia has that already.
Am packing about tomorrow, I really hope its going to be ok. Will let you know.

Melissa

[minimatron]

Hi Just letting you know that rebeccas review went well. The specialst seems to think that it will resolve itself. Her thigh creases are a bit uneven and her left hip is stiffer than the right, but its stable and he couldnt dislocate it. We go back in 9 weeks to see if there is change. Thanks for listening, I'll be back in 8 weeks to vent again coz I know for sure I will be nervous!!!

[babyBen]

Hey there! my baby boy who is 8 weeks old has been diagnosed with DDH. he was put into a Dennis Browne Bar just 2 days ago. So far he is just hating it. He gets very upset with the lack of movement, but after reading these threads I feel more confident that he will get used to it pretty soon. Putting the bar on after nappy change is the most distressing. Almost wish it didnt need to come off.
I also feel very nervous that im not putting the bar on correctly after nappy changes, but I guess you cant go to far wrong.


http://photos-e.ak.fbcdn.net/hphotos..._6099408_n.jpg

Are there many mums out there with a baby boy suffering from DDH??? I hear its pretty rare for boys to have this.

[nicoli]

Hi guys

I just found out at my 20 week scan that we are having a boy! At least his chances of having DDH is slightly less because of his gender.

Nicole

[minimatron]

Congratulations Nicole, hope all is well for his little hips

[celtic31]

I am new to this thread, But what I want to say to you is hold on. I have worked with children with sever dissabilities. She will be fine, not to say that there will not be hardships for her. But I believe in the complete restoration of what God has created. It might not look like what we think it should look like. But he is a compassionate God!!! I have just gone though a loss of a child, and I would give anything to be where you are. I know this may not make it any easier. She has life and God gave it to her. Just rest, and know he is in control, not making her that way, but He has a plan.. She is special and don't think of that as bad. Think of it as wonderful!!!

[minimatron]

Just had Rebeccas hip u/s and xray yesterday. We have the review with the orthopaed next thursday. The u/s guy said it looks heaps better...yay, hopefully it will be the same with the x-ray. The only thing about yesterday that upset me was with her first x-ray I requested they put a metal thing over her overies and they said that they dont do it for the firt xray coz they need a good look. I aked if it would have an effect on them, however both the people in there didnt speak much English and I didnt really get much of an answer. They said that at subsequent xrays she will have the metal piece.

Anyway will let you know how it goes. Hey Nicole, hows your pregnancy going? Hows Scarlett?

[nicoli]

Hi guys

Melissa - it's good to hear that Rebecca's hip is looking better. Good luck next week. I had never thought about asking for metal plates. Is there information out there to suggest it could cause damage to their ovaries?

My pregnancy is going well. I'm much more relaxed this time around. Little Scarlett is also going well. She is still sleeping soundly in her brace at night but I am going to take it off in the next month or so when we move her to a big bed! Wish me luck!!! The doc said we could stop wearing it by her next visit (in July).

Hope everyone and their little ones are well.

Nicole

[Johanna Michelle]

Hi there everyone!

Its so strange to hear the parents point of view of this disability! Im 23 years old and have suffered with the condition since birth. Unfortunately it was not spotted until I was 18 months old the doctors thought my mum was just a paranoid mother when she told them she thought there was something wrong! nice.....

Any way, Ive had about 7 operations, pin and plate etc, had that done twice as the lovely doctors did it wrong the 1st time. When I was 18 I had a major operation taking part of my pelvis out and grafting it onto the side of my hip to limit the chances of dislocation. It was an awful ordeal and I lost almost 2 years of my life trying to recover, and tbh my problem hadnt got any better from it!

I have no intention of having a hip replacement as its best to hold on to your actual body parts for as long as possible, as Im sure ur all aware of! I can walk and go out and party etc, same as any 20 something! and though It does affect me (eg when I went to New york last year, I ended up having to get a wheelchair as I was in so much pain from walking around, but Im one of those people who try and do as much as they can to the limit...not sure if thats good or not!lol!) I try and forget about it, and have to remind my friends to slow down where were out and about.

I was bullied about it in school because of my limp etc, but those people soon left my life and I am surrounded by real people now, not idiots! and all of those people are losers now (I have found out via facebook) and I now have a degree and am an editor for a television company pretty much as soon as I left university. so remind ur little ones of that, or remind yourselves. As such ordeals have made me want more from my life and do better, and things can be better, but it does help if people are aware of problems.

I have had an awful time (in my teens) trying to get jobs as no one would touch me with this disability, so I lied on my applications and said I was fine and suddenly got jobs. Unfortunately thats the way things are, it needs to be changed but sometimes we have to play the game to get work, which can be the same for anyone I guess....

I dont know what state my hip will be in 10 years time, but your can say that for any 'able' bodied person, as anyone could end up in a car accident or have many other bad things happen to them etc....so just remember that!!!!

Hope all are ok and good luck to yourselves or little ones!
Im contactable at jomichelle86@googlemail.com if u want to say hello!

Big Love!
xxx

[minimatron]

Hi all, just thought I would let you know that we have the all clear for Rebeccas hips. All the angles and coverage are considered normal, so much so that she wont have to be reviewed. So am happy with that. Can enjoy my first baby without a harness!!!

Good luck mis_tree with your ds review....nerve racking waiting isnt it?!

Nicole; good luck getting Scarlett into a big bed. Took me about 2 months for Olivia to really settle in and she still comes in every other night.

Well I will stck my head in to see how everyone is going. Take care

Melissa x o