Hip Diplaysia Support Group #3

[teepee2]

Hi all. Hope everyone is doing well.

Just dropping in quickly to wish Taylor all the best for tomorrow. I'll be thinking of you and your precious bub Rochelle xx

[minimatron]

Hey Karen,
Welcome to BB. Sounds like you are doing just fine. Olivia has been in the Pavilk harness since she was 5 weeks old...shes now 6.5 months old. For the last 10 weeks, she has been wearing it at night only. I found that her legs are slowly coming in, but arent as straight as other kids. She doesnt find it a problem though. Initially she hated tummy time, with and without the harness on, but now shes fine. She was a little bit behind with things like rolling, but in the past week, I would have to say shes just worked it out. She rolls both ways, although it looks as though rolling from her back to her front is easier...when shes on her tummy, she has a little trouble flicking her leg over, mostly because they are still apart. Shes a while away from sitting because the harness supported her upper body, so its not too stron. Our physio gives us exercises to do to strengthen her torso. When shes on her tummy, she brings her knees under her belly, so she moves a little. Shes more capable of moving around on her back! My little bit of advice is to watch the head. Olivia has a really flat head from being on her back all the time. In heinsight (sp?) I probably should have put her on a bean bag, sat her up on pillows and more tummy time.
Good luck with it all.
Melissa
ps...swimming was so much fun and she was so tired she slept most of the day!!!!!

[black_rose]

I haven't posted an update for a while and I am just catching up on the posts.

Good luck for today Rachelle.

Adele has had her Dennis Brown Brace adjusted twice now, there was a lot more improvement this time around so it looks like it may still be off in 12 weeks. Last time he said it could be 6 months so it was a relief today to have good news. We have to go for another ultrasound in two weeks and see the Dr in three.

The positive thing is that Adele is coping fine and is only grumpy for a day after the ajdutsment of the brace so it makes it easier for us to deal with. She enjoys being on her tummy and moved around on the floor today so she was sideways on the playmat.

Melissa I can't wait for Adele to start swimming, I am jealous!

[BubbaGirl]

Hi Melissa,

Thanks for your response. Must have been hard in the early weeks of adjusting not only the brace but a new baby as well.
Summer is really strong on her tummy and lifts herself right onto her hands for long periods. She had just started rolling both ways when she went into the spica. Her instincts still tell her to extend her arm and tilt her head to roll but her hips don't let her. I don't think she'll lose this and will hopefully find a way to achieve this when in the brace.

Does anyone else have much experience with this - Summer will be 8.5 mths when she goes into the brace.

I don't think a flat head is an issue as she is upright a fair bit (I use a bean bag, pram and carry her around a fair bit) and she sleeps with her head on the left and right but will keep an eye on it all the same.

I'm interested in knowing more about the swimming lessons ie. when started, what you do in the water with Olivia, is it an actual lesson? as I'm keen to put Summer in the water for the hour she will have the brace off.

Also does any one have any ideas on what clothing bottoms fit bubs in the brace? It will be summertime so just need some thoughts on little pants etc. Obviously wider dresses and skirts work well.

Thanks

Karen

[Kartier]

Hi everyone,
Hope you are all well. I wanted to post a question to see if I may get some advice. I have a 6 month old in a Pavlik Harness, she has been it the harness for 5 weeks now and was coping well considering her given situation. However 2 days ago her sleeping pattern changed. She went from sleeping from 6pm through to 6am in the morning to refusing to sleep at all. For example, she was up from 10pm through to 6am in the morning (on and off). When she fell asleep I would place her in her cot-however 5 min later she would wake and scream,not cry but continually scream like she was in pain. Being concerned for her I took DD to the doctor he couldnt find anything wrong with her. She gets so frustrated that she pulls the straps of her brace and hits her legs. This has only started as of 2 days ago, before she was not hassled by her brace. I am not sure if it is a 6 month thing or if it maybe her brace or wanting to move more and getting upset that she is unable to move. However during the day she will go to sleep in her cot, no worries at all. I am at a loss as to what to do as we have tried everything, in the end we take her into our bed and she falls asleep there. Did anyone else have this? Any advice would be great as we have had no sleep for 2 days. Kartier

[Rachelle]

HI Ladies!

Karen-Thank you for sharing your story. It is so helpful to hear another person's experience as it gives us all strength to walk through all of this. And you are so right, our babies don't have a "long term disability", thank God! I am glad to hear that Summer is over the half way point and it sounds like you have adjusted fairly well so I know in time, we will too.

So, here's the latest. Taylor had her surgery yesterday morning. The hardest part emotionally was giving her to the anesthesiologist's so they could bring her to the OR. Well, that was the hardest part yesterday anyway. The past 24 hours have been almost unbearable. I kept telling the resident on call last night that Taylor needed something to help her relax like a muscle relaxer and he kept saying No and continued to give her narcotics and benadryl which was literally making her crazy. Up until a few hours ago, she had only slept 3 hours total in the past 24 hours. The resident finally agreed to give her a relaxer and now she has slept for over 2 hours. I couldn't help but cry this morning. I've never felt so heart broken and helpless. As a mother, all you want to do is help your children, and I realized that I can't do anything to "fix" this for my baby. Very heartbreaking! But, I know she will adapt in time.

As far as her surgery, it went well. She will be in the spica cast for 3 full months and will have to have 2 cast changes under general anesthesia during that time. After the cast comes off, she will be in the brace for 1 year (the first three months of that, she will wear it 24/7 except for bathing and diapering).

Anyway, I will keep you all posted!

Rachelle and Taylor

[KylieCL]

Hey Rachelle,

Its good to hear from you. Im glad that Taylors operation went well. I just want to remind you that we are all here to support you over the next year or so as i am sure there will be plently of challenges ahead! But regardless im sure that all will work out fine!

It's so sad to hear that Taylor isnt coping to well after her operation. She will get there remember that! she can only get better and now after the resident is on side and doing what mother knows best you may beable to relax a little and get your head around a bit of what been happening.

All the best over the coming weeks and please keep us posted!

[Rachelle]

Thanks Kylie!

Taylor is doing much better today. She was actually discharged last night from the hospital. She just wasn't doing well in an unfamiliar environment and the other baby that was in the room was crying off and on constantly. So, last night they sent us home with the pain meds and muscle relaxers and Taylor slept 12 hours although I got her up three times to change her diaper, positioning, and give her the medication. Now, she is sleeping again (her third two hour nap today). So, I am grateful that she is getting caught up on her sleep. She definitely needed it! She has been very frustrated and angry today and when she gets too overwhelmed that she can't get down and walk like normal, I think her brain shuts down and she just wants to sleep. I guess it's her body's way of healing itself and her way of dealing with it all. I know she will get better with time!

Thanks for all of your support ladies!!!

Rachelle and Taylor

P.S. How do you get a picture on the bottom of your messages?

[BubbaGirl]

Hi Kartier,

My bub is 6.5 months old and has been in the Spica for just over a month. She has been a great night sleeper since 2 months old and after being placed in the spica she does wake more often HOWEVER I don't think it is mainly due to this.

One night Summer woke 6 times crying her heart out and I was able to quickly settle her and she would go back to sleep. This happens on and off especially after I have put her down in the evening - she wakes about an hour later crying but then settles straight back to sleep. I wonder if she has muscle spasms after being asleep for a short period (although this does not happen during the day).

When they hit 6 months bubs go through developmental changes due to a whole range of factors like eating solids, growing teeth, reaching new milestones. My clinic nurse told me that Summer is probably getting frustrated because her body is telling her to do new things ie roll, crawl, sit up but her legs won't let her.

Your situation sounds far worse than mine (and I hope it has calmed a little since you sent your message) but I guess you just have to hope its a phase that will pass. To be crying constantly does indicate that something just aint right.

If it persists maybe try contacting your specialist/hospital care team to see if they have had experience with this. I don't think GPs really have the expertise in this area to identify a problem relating to the brace.

Hope that helps in some way.

Cheers, Karen

[Rachelle]

Hi Kartier,

My daughter is now 18 months old and wasn't in a cast or harness at 6 months, but right at about 6 months old she went from sleeping all the way through the night for 12 hours to waking up multiple times per night. Her pediatrician said that this was due to her development and teething, although I am sure your baby's harness isn't helping. My daughter had sleeping issues until she was 10 months old and then I just got to the point where I was so sleep deprived and couldn't handle getting up with her multiple times. I finally let her cry it out and stopped bringing her back to bed with me. I would go in to soothe her and it was the hardest 4 nights of my life and hers too probably, but at the end she learned how to put herself back to sleep and hasn't had any problems since. If you try this method, be sure to have a lot of support because it's almost impossible to not go pick up your baby when they're crying. This doesn't work for everyone and as long as your happy with the arrangement and don't mind this phase then just continue with what you're doing. She will grow out of it at some point! I hope this helps.

Rachelle

[Kartier]

Hi,
Thanks for your support and help, it has helped us out in our current situation. DD had a few bad days where she just wouldnt sleep at all no matter what we did to help her it wasnt what she wanted or needed. Since then it has settled down and she has been checked out by her specialist and a new harness was fitted yesterday. Although her specialist seems to think it was not the harness but her development (ie teeth). DD has been a little better in sleeping at night but we are still having a few problems putting her to bed,we will keep at it.
BubbaGirl: Thanks for your help. We ended up seeing her doctor the next day and she was o.k. Her specialist thought that it may have been her brace and fitted her to a new one. Since then her sleeping has been o.k. It is strange as she will sleep during the day on time and for 2 hours a go,but when it comes to putting her to bed a night she gets so upset. We end up trying to settle her for an hour then we take her for a drive or a walk. It seems to have helped lately. I am sure it is just a phase DD is going through.
Rachelle: I took your advice and let her cry it out for a little while, but she went on and on for at least an hour. So we gave up and took her for a drive. I know that this will not last I will keep at it and will have some postive news soon
Thanks everyone
Kartier

[Rachelle]

First off, Kartier, I am glad to hear that your DD is doing a little better. The cry is out method is definitely the hardest emotionally. I think my DD cried for 90 minutes the first night and then she still woke up several times and it took her 30minutes each time to go back to sleep. I gave up quite a few times. It really is so hard to hear your baby crying and not respond. Finally after four months of it with my DD, I just got to the point where I couldn't handle it anymore and literally went out to my living room and put in ear plugs that made her crying not so loud. If your DD is teething, benadryl rubbed on her gums works well. It acts as a topical anethestic. Anyway, I hope things get better.

To all the ladies: Last night was a really hard night for us. My DD is SOOOO angry and is acting out agressively. I got up at 4 AM to change her position and diaper and give her the medication. She was screaming and trying to pull her spica cast off and saying "STOP! STOP!". I finally broke down and lost it and started crying right along with her. I feel so helpless! She was so out of control that I had to give her the relaxer/anti-anxiety meds, which I've been trying to stay away from, but she may need a little a few times a day just to get her through these three months. I just can't imagine what must be going through her head, to be a happy 18 month old toddler one day and wake up completely immobilized from the chest down (except her feet). Her anger and frustration is totally warranted I just don't know how to handle it when she gets so physical with me and starts slapping me in the face. I've tried her normal routine of holding onto her hands and telling her "No" firmly. I've also tried telling her that I know she is mad but she can't hit. Hitting hurts. None of it seems to be working and I know she's doing it out of anger because she is "stuck", as she calls it, in her cast. Any advice would be appreciated!

Rachelle and Taylor

[KylieCL]

Hey All,

How is everything going with your beautiful babies?

Azaliah is doing so well, i am so proud of her! She has taken it all in her stride and is acting like there is nothing attatched to her which is so good to see! We are going back to the Orth. Surgeon on the 8th of november and hopefully she will get to take her brace off!! The Doctor said that the two months will more than likely be more than enough for her as the joint is sitting perfectly together its just the cartlidge that needed to be a touch more rounded... Oh i have my hopes up big time but am also prepared for any dissapointment that might come my way.

Rachelle how is Taylor coping now? i hope she is doing better and has adjusted some more in this past week.

Thinking of you all!

[Suezt]

Rachelle, I have tears rolling down my face. Your poor little girl. It's been a few days since your message - has she got any better? It really must be so frustrating for them. I'm sure with time she'll get used to it - but that doesn't help the now does it? Huge hugs to you. I really feel for you and wished I live near you to come around.

It's been ages since I've been on here and something must be wrong with my link to here - cause I haven't received any emails telling me that there were new messages on here. I just assumed it had been quiet on here and no one had posted any messages. And then I come on and there's pages! Grrrr

Karen, it's great to hear that Summer is getting better in her brace. Re: clothes - I too have been thinking the same getting ready for summer. I went into Kmart this week and they have little cotton leggins for girls. They're really cute. And seeing that they are cotton and 3/4 length they won't be as hot. I'm so praying that Sophie gets her brace off on her next visit on 27th Nov - she would have been in the brace (rhino) nearly 8 mths by then. We've had a few hot days here and it seems she has a permanent rash/mark around her legs and waist. How do the mums/bubs cope that live in hotter climates?

Kartier, we too had sleeping problems around the 6 month mark. I'd just got Sophie sleeping through the night and she had to go in the brace We had a week or so of shocking sleep once the brace went on - but after 2 weeks I got tough like Rachelle, I did the control crying thing and it only took a few nights for her to start sleeping through. My fear now is once they take the brace off she'll find it hard to sleep through. Has anyone continued to put the brace on their kids at night to sleep once they've been told it can come off? I suppose we'll cross that bridge when we come to it

Sophie is going well. Still bum scooting around and taking in the world. We've both had colds on and off lately - so that's put a damper on things. She's just started to pull herself up this last month on to her knees - even in the brace, but still shows no signs (even when the brace is off) of wanting to stand on her feet. In fact she cries when we put her on her feet. Still, not walking at 14mths has its advantages!!!

Anyway, just wanted to pop in and say Hi.
Take care ... hugs to those who need them!
love
Susan

[Kartier]

Hi,
Just wanted to give you all an update on DD progress. We all had a rough few weeks. We went to see her specialist a few weeks ago to see if DD could have her harness off all together only to be told that her hips had not healed as fast as what the specialist had wanted. We were shattered at the news. DD was placed in a Rhino cast/harness, which restricts her movement more than the Pavlik Harness. DD hardly slept or ate for the first 3 days after the Rhino cast was placed on her. We have been told that she will be in this cast for 6 more months. I think we both cried hearing that as we were hoping that she would be free from the cast/harness by her first Christmas. It may seem selfish but I wanted DD first Christmas to be free from the harness so she could play. She will still enjoy her Christmas no matter what; just feel upset that she needs to be in the cast for another 6 months. I know that this is for the best for my DD but I know that as a mother I just wanted her to be happy and I know that she is starting to fight me and get frustrated which makes me upset. Not sure what else I can do to help her or us at this stage.
Rachelle- how is DD going? Has she started to settle down yet? Any update on what her specialist thinks?
Karen- how is summer going?
Suzet- My DD has just been fitted to the Rhino Cast and it has been rather hot at the moment. I have put cloth around her legs where the straps are. This helps stop the rash, hope this helps.

[bridee]

Hi All,

An update on Georgie. We saw our specialist yesterday which is 6 weeks since her Pavlik Harness has been fitted. We had good news, her left hips which was considered mild initially is now normal and her right hip which was considered severe is now mild (67% coverage). The specialist said another 6 weeks should be all that is needed. She can now be out of the harness for a few hours each day which means she can now have a bath again, which she (and us) thoroughly enjoyed last night.

Kartier, we are fortunate that Georgie will be able to celebrate her first Xmas without the harness.

To everyone I hope your little ones are coping ok and more importantly you are coping ok. It looks like our journey is going to be relatively short compared to many you.

[Suezt]

Hi Kartier,

Sophie too is in the Rhino - she's been in it for nearly 7 months now. At first it was very restrictive - but over time the brace becomes very flexible and molds to their movement. The first week for us was a shocker with Sophie waking every half hour - now she won't sleep if she doesn't have the brace on! E.g. if she falls asleep in the car on the way home and I go to put her in the cot - she won't go back to sleep until I put the brace on her! It's become a bit of a security blanket (which worries me when she'll eventually have the brace off)

I'm sorry to hear that you have another 6mths with the brace. I always get my hopes up when we have our Orth. Surg. visit only to come out of the surgery nearly in tears. My last visit was on Sophie's 1st birthday and I was so hoping that he would tell us they we could be rid of the brace and give her the gift of freedom & 100% health for her birthday! You can imagine my disappointment when he said see you in 4 mths the brace is to remain on same as usual - so I know what you mean about Christmas! It'll all be over sooner than you know. Actually I really don't think much about Sophie being in the brace anymore - it's just part of our everyday routine. She too doesn't seem bothered by it. She scoots around on her bum, rolls over, pulls herself up - whilst she has the brace on. Actually the OS said he wouldn't be surprised if next time we come in she'll be walking in it. It's only a month til our visit and I don't see that happening - but it's good to know they are capable of doing anything that the other kids are doing! They're such little champions our kids. BTW - great idea about the cloth rather than having full length pants/leggins. I'll give that a go if it gets too hot - thankfully we're in Melbourne. Thanks. Hugs to you.

Bridee - that's fantastic news about Georgie. Congrats.

Anyway, I'm off to bed now. Chat soon. Susan xxx

[BubbaGirl]

Hi everyone,

Summer had her spica changed last Thurs and the xrays looked good. The spica will definatley come off in 5 weeks on Monday (3 Dec). She now has hot purple fibreglass instead of plaster and her legs are not positioned as wide as before. It isn't fun to see your baby go under anesthetic and come out at the end of it but it was a little easier this time. She actually woke on her way back from surgery and the nurse came to the waiting room asking for Summer's mummy with her crying in her arms. She settled pretty quickly.

Summer has been fitted for her brace and will go into that when she comes out of the spica. I can finally see a light at the end of the tunnel (well this bit anyway) and am starting to perpare myself for her to be in the brace for 6 months. My specialist initially said 3-6 months so will not set my sights of her coming out of it for her first birthday in March.

Kartier - my heart bleeds for you as I know how disappointed I was to learn that Summer needed the spica then brace for 6-9 months all up (when she was already nearly 6 months of age). Our bubs are also that bit older and we are seeing their development delayed which is the hardest thing of all. I'm sure you're like me in that you wonder what DD would be doing at this point and compare her to other babies at her age. Its a normal thing I guess. I know its hard to see now but when she is older you will look back and be glad that the problem was fixed. I do wonder why the treatment (ie. spica or brace and length of time) seems to be so different for all DD's. There just doesn't seem to be much consistency from people's stories. Hang in there and keep up the good work.

Susan - thanks for the tips on the clothing. I think I'll just wait to see what position her legs will be in etc. Summer will be in the brace until she's 1 or more which at this time is a little hard to accept when their development is so delayed. I am hoping that Summer will learn to roll again, crawl and maybe walk in the brace. What is the rhino brace?

Just wondering if anyone is being treated in Syd by Michael Bellemore (head of orthopaedics at Westmead). Might try and catch up on our next visit in Dec.

Does anyone have any experience of what to expect when DD goes from spica to brace (DB orthosis with waist and leg straps)? Also can anyone recommend a good high chair that works with the brace?

Keep on soldiering on everyone. Everyone seems to have their good and bad days which I think we would have anyway if they weren't in their spicas/braces. Our kids are very special and we all deserve a pat on the back for all the special care required.

Until next time...