Hip Dysplaysia Support Group #2

[Razzberry]

Hi girls,

DD is having her second ultrasound tomorrow at Westmead Children's Hospital. I am praying that her hips have improved (was 44% and 48% at 6 week ultrasound) otherwise was told she will be referred to an ortho and will be in a harness or brace. She will be 11 weeks on Wednesday. Hoping we will be able to get results and treatment quickly if need be! Will post tomorrow arvo on how we get on.

[Jesska]

Goodluck with the ultrasound tomorrow!! i hope her hips have improved.

[rarni]

hi new to this site,
Have a little girl just gone into spica cast. Usual six week deal hopefully and then braces. Think I have my head around it. She is 9 months old and diagnosed late. Had just started to commando crawl and was told she would not do this in the cast but after one week she is getting around. just wondering if this is normal and can it do any damage? she is getting great upper body strength already. Anyone had any dealings with this. Thanks Rarni

[Jesska]

hi rarni, welcome to the forum.
hows your lil girl going in the spica?

[Lizy79]

hi new to this site,
Have a little girl just gone into spica cast. Usual six week deal hopefully and then braces. Think I have my head around it. She is 9 months old and diagnosed late. Had just started to commando crawl and was told she would not do this in the cast but after one week she is getting around. just wondering if this is normal and can it do any damage? she is getting great upper body strength already. Anyone had any dealings with this. Thanks Rarni

Hi Rarni

Welcome

My DS was diagnosed at 20mths - he commando crawled as soon as he was out of bed after the first cast went on.. the Dr's said that this wasn't a problem and not to be concerned because how can you stop them really??!!
DS had 3 casts and crawled in all of them.. the only thing you need to watch out for is wearing through to the knees.. DS wore through 2 of his casts... the third they re-inforsed but this then created a problem when removing it as it was too thick to get the saw through. I would suggest that if you notice this happening to use duck tape or something to re-inforce the knees.

The last brace we has DS even learnt to walk in it!!!! I think there just isn't stopping some kids... we never stressed about it.. he was happy and that was the main thing in our opinion.

[Razzberry]

Her hips have improved - we still have to wait a few days for results so we can talk to the paediatrician but the ultrasound lady said she is not grade 2 anymore and that they have improved. She said she doesnt think she will need to go into a brace or harness. Sooooo happy to hear.

[wiggs]

erybery that is wonderful news! Hoping for improvement at our mid Jan x-ray too.
It's so great to hear good news and that our bubs do improve over time. Good luck with your follow up aptmt.

Can't believe it but Chloe is crawling backwards brace and all, is absoloutly obsessed with it. All the people at the RCH told me it doesn't slow their development but I didn't really believe them. Makes me feel better about the whole thing.

[Miss.September]

Oh wow, Wiggs!!! Crawling in the brace! Fantastic

Well, we had our appointment today with the surgeon and we are not yet brace free. Her bad hip is developing well, but still not enough to be out of the brace. The better hip is perfect now, so that's something. Our next appointment is in seven weeks, so through Christmas and New Year for us

The challange for us now is that we have a holiday booked for nine weeks time. We've postponed it once already, used a heap of frequent flyer points to change the flights, and changed it to March, thinking "For sure, she'll be out of the brace". Now I'm not so sure.

Just trying to stay positive and hope it doesn't get too hot over the next few weeks. The surgeon said that if we wanted to take her out of the brace for a bit longer if we were going to the beach or the pool, we can. So I'm thinking that I'll take her high chair to my mum's for lunch on Christmas day and damn it, DD will sit with us for our first Christmas together, instead of lying on the floor while we eat.

Hope everyone has a lovely Christmas

Corelly x

[rarni]

Hi Rarni

Welcome

My DS was diagnosed at 20mths - he commando crawled as soon as he was out of bed after the first cast went on.. the Dr's said that this wasn't a problem and not to be concerned because how can you stop them really??!!
DS had 3 casts and crawled in all of them.. the only thing you need to watch out for is wearing through to the knees.. DS wore through 2 of his casts... the third they re-inforsed but this then created a problem when removing it as it was too thick to get the saw through. I would suggest that if you notice this happening to use duck tape or something to re-inforce the knees.

The last brace we has DS even learnt to walk in it!!!! I think there just isn't stopping some kids... we never stressed about it.. he was happy and that was the main thing in our opinion.

Hey Lizy 79, Jesska,
Thanks for your replies. Great to hear that they crawl in the cast no problem. She is getting so fast now that she has a rocking action up. Had a shocking day yesterday. Had to go for MRI to check hips had not redislocated in cast. Gave DS liquid sedation which she promptly spewed up and then they couldn't give her more as they didnt know how much she had spewed. When she finally slept after 20 minutes there was a hold up on the machine and after 45 minutes of waiting she woke up when they went to put her in. Then they tried to pin her down with no success and ended up having to do ct scan instead. So more radiation. It scares the life out of me. Very emotional day. Does anyone know the effects of so many xrays. I am really frustrated that they dont cover her ovaries for xrays when I know she has many ahead of her.

Lizy79 your DS sounds like a little trooper crawling in all casts and wearing out the knees. We have put a sheep skin under her cut out in body shape and that works great to protect the polished floor boards and is slippery for her to get around. Carpet areas and no worries. hey least this way she can help with the cleaning. ha ha Rarni

[wiggs]

Chanzanlow - just wondering how things went with your DD on Tuesday, have been thinking about you. Hope all is going OK and you are adjusting. The first week is not fun but it does get better.

[MummyNaomi]

Hi Everyone - I'm having a bit of a tough time emotionally so sorry for a selfish post - I just cant shake this sadness I feel of Bailey's situation in the brace. It's really silly as I think he is coping fine most of the time, but I just have alot of anger, resentment and sadness about the situation that I just cant seem to get past. I get panicky every time a baby around us hits a milestone - eg crawling, rolling, pulling themselves up etc and it just reminds me how behind and immobile my little guy is. Don't get me wrong, I am enjoying him, but I just worry ALOT and having the clock tick down as I am returning to work in March, this isn't helping either. I keep telling myself logical things like "Just enjoy this time", "He'll catch up", "Don't waste this precious baby time" etc, but then something happens to drag me back down again (eg simple things like a bath used to relax him before bed, now as I have to flip him over so many times to get the brace back on him after a bath and then dress him he is cranky and it just drags out bed time etc). The biggest issue I have is cuddles, and its making me cry typing this out but I just want to be able to hold my baby close in a proper cuddle - are these feelings normal? I just cant shake them, I think I cry at least once a day over something brace related............ I feel like no-one IRL understands, or they think that as I am coping with the practicalities that I am coping emotionally, and in fairness I have been hiding most of my feelings as I dont want to burden people and when I have let my feelings out I am not finding the support or understanding that I am looking for (and am sooooooooooooo over people telling me that he'll be out of the brace before I know it, and he'll grow up to be healthy, wont remember it etc etc - I KNOW all that, it doesn't help me!). I know he doesn't have cancer and is healthy etc etc, and I know there are always people worse off, but this is our 'worst' situation and I am struggling to accept it, I dont think I will ever accept that this is how my babies first year is supposed to be........I feel robbed of this special time - rolling, crawling, learning to stand, by the time these all happen I will be back at work and I will miss it all, its not fair. I scrimped and saved like a mad woman to have almost 12 months off as these things were important to me. Unfortunately I cannot extend my maternity leave. Bailey was already behind in these things anyway (his delayed gross motor issues led us to the DDH and there seems no sign that he will do these things in the brace unlike other babies)

I just dont know what to do..... Maybe I just need to find a way to accept that there is nothing I CAN do, and this is they key - it all seems logical in my mind, but overwhelmingly the emotion keeps over-riding everything

Naomi

[Lizy79]

HI MummyNaomi,

I know its hard - I think we all know and can relate.... at sometime even if you weren't going through this with your little man it would be something else. I think we can all agree that at some stage being a mum we have second guessed ourselves, felt bad that we missed something, got angry at our babies for something silly like lack of sleep... the list goes on. What you are feeling is normal but you are not alone.... My DS was dignosed after I had gone back to work fulltime.... he has gone thru all the braces, casts etc with me at work.... my partner took 7 wks off in the beginning but then DS had to go to daycare... I have had to take time off for appointments so am torn between feeling guilty that I'm taking time off work and feeling guilty that I can't dedicate more time at home when my DS is going through such a big life event - double edged sword really

Find other things that he may enjoy - maybe a walk outside in the pram or leave the house work for a little while and lay down and just watch him play... I'm sure he's not too fussed... so why should you be... Try and be happy BUT if it seems never ending and you are always feeling sad then I would talk to your Dr about it in case its more than that.