Hip Dysplaysia Support Group

[nicoli]

Great news Belfie - at least you were prepared for the worst going in.

We are off to the hip clinic to day for Scarlett's xray and check-up. I'm crossing my fingers for good news. I am pretty sure we are handing her brace in for good today but am not sure what the next step is. I'll let everyone know how we go...

Nicole

[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!