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Old 01-06-2013, 08:24 PM
MAB MAB is offline
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Default What can a parent expect?

I'm so glad my son's surgeon put us on to this forum. It's certainly helping to allay my fears. Mr 14 has had a rapid onset of scoliosis with a 57 deg right thoracic curve, 39 left thoracic and 29 left lumbar. I'm frustrated and annoyed that we didn't notice it sooner .. why oh why don't they screen in schools? The surgeon's tried to reassure us that rapid onset is not uncommon during periods of growth, which he's definitely had over the last 6 months.
My son seems to be handling the idea of surgery far better than his parents that's for sure.
I'd love to hear from other parents who have shared the journey with their child. What can we expect when he's in hospital, and when he comes home. In terms of taking carers leave from work, did your child need someone at home with them all of the time for the 6 week post-op period? How did they manage when they returned to school - were they able to take public transport to school when they returned? Did they do part days at school for a while?
Any advice you have, I'd love to hear.
Thanks
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Old 01-06-2013, 09:12 PM
M&M M&M is offline
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Default Re: What can a parent expect?

Hi MAB

My 13 year old daughter was diagnosed in February with minor scoliosis. As a parent I have found this forum invaluable.

As to what is involved with surgery, a young man by the name of Jake has written a brilliant post at http://www.scoliosis-australia.org/f...read.php?t=537
Renee has also just had surgery and written quite a bit about it. All of her posts are on this link: http://www.scoliosis-australia.org/f...searchid=13893

I think most of your other questions will be answered on this forum - it is just a matter of reading as many of the forums as you can, especially those in the surgery section.

Best wishes
Carol
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Old 01-06-2013, 09:53 PM
Pegacorn's Mum Pegacorn's Mum is offline
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Red face Re: What can a parent expect?

Hi MAB,
My daughter s scheduled for surgery on 27/6, and we have not long had our post op info. In this, they say that most kids go back to school for half days after the 6 weeks. I didn't realise we would be having a brace after surgery until we got the hospital information, so I still feel a bit anxious about not knowing enough.
Our situation was similar to yours in that we didnt know our daughter had scoliosis, then when we saw a specialist, we were told bracing wouldn't fix it, so it was all a bit of a surprise . I felt really bad that I hadn't noticed what was going on, but apparently it can all go pear shaped (or s or c shaped) very quickly. Our daughter is 14, in year 9, which is probably a goodyear to have disrupted. All the best. PM
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Old 02-06-2013, 10:13 AM
Eliz Eliz is offline
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Default Re: What can a parent expect?

Hi MAB,
You sound very similar to me! Someone at school picked up my sons unevenness in nov last year and we were horrified that we hadn't noticed. Straight to gp, X-rays , then specialist appointments. Forum kept me sane while waiting for specialist. We are in WA and travelled to Melbourne for a very rapid surgery time, feb 18.
Lots to tell you about the whole experience really. My son is doing well. He was extremely keen to have surgery because he was old enough to understand the consequences of not having it! That made the journey so much easier. As a parent the guilt is terrible, watching them go through it. As it was he was always just so grateful that I was there for him 24/7 at the beginning. (I couldn't leave him for too long). I slept on a mattress on the floor in the hospital. He gave me the last night off, day8 I think, but didn't sleep well in the hotel anyway!
Going back to school, didn't really happen till 8weeks for us, then only 2 hours max. Then school hols and now full time. We still drive him cos there is a 20 min walk at the other end of the train, school itself he finds exhausting. Next week he will be on the train a couple of times. He uses an overnight suitcase with wheels and friends at school help him with lifting etc. He is getting used to being different without the bag.
So much more to tell you, keep asking questions, it's good therapy for everyone !
Liz,
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Old 02-06-2013, 12:23 PM
MAB MAB is offline
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Default Re: What can a parent expect?

Thanks so much all of you.
We're still waiting for a surgery date but he has an MRI and bending x-rays over the next couple of weeks and then back to the specialist.
We sound very similar Liz you're right!
My son also has a 15 minute walk to and from train stations for school - how we're going to tackle that when he does eventually get back to school I have no idea.
I'm a school teacher and have warned my Principal that I'll be needing time off but at this point have no idea how long it's going to be. Luckily my husband has more flexibility than I do so between us we'll manage somehow.
It amazes me how strong and positive my son is being - he is also very keen to have the surgery which definitely makes the whole thing easier to deal with.
Anyway thanks all .... you'll definitely be hearing from me again!
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Old 03-06-2013, 03:45 PM
jane jane is offline
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Default Re: What can a parent expect?

Hi MAB, I'm from WA like Eliz. Sophie had surgery nearly one year ago (June 28th ) in Melbourne too because of long wait in WA (you cannot go private here). I am a teacher and I decided that because of the demanding nature of my job (and yours too) I needed to be able to be there 100 per cent of the time for Sophie until she went back to school fulltime. In total I had 7 weeks off school (plus 2 weeks of school holidays in the middle). This was a generous amount of time but it allowed me to be close by when she went back to school part-time and then be immediately available for her first week back fulltime. I work an hour away from her school and so having the time off really helped. I teach early childhood and have to be there 100 percent for the children I teach too so I did not want to try to juggle that. Sophie went back to school part time at 4 weeks post surgery and was back at school fulltime by 6 weeks. It varies though, depending on the extent of their fusions and any complications in their recovery. Sophie had a right thoracic curve of 63 degrees and a T4-T12 fusion. I did not let her catch a bus until 3 months post surgery when she no longer had a brace on. The brace she had was lightweight and able to be worn easily under her uniform. We still limit the weight of her school bag and my husband takes her to school if the bag is too heavy. However, 8 months post surgery she got school swimming champion and interschool runner up and last week won shotput, discus andf javelin in her athletics carnival. Even with the time out from school she got year 10 dux last year...so you will be amazed at how strong and capable they are after such huge surgery. We had excellent support from the teachers at school and all her friends helped her carry things and do things when she returned to school. The time for pre-surgery workup varies but I had 5 days off pre-surgery, 7 days in hospital with her, 1 week in melbourne post surgery and then flew back to WA. The WA surgeon said he would not even like to do surgery in Year 11 and 12 so yes it was great that she had her surgery in Year 10.
This forum will be your lifeline through the surgery and recovery as it has been for so many of us. Like Eliz, I am happy to answer any questions but she can help you more I feel, having a boy...as we all know how different males and females are... Take care,
Jane
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Old 03-06-2013, 08:11 PM
jane jane is offline
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Default Re: What can a parent expect?

Hi Jane again...forgot to say to taske into account that your son will be on a medication regime when he comes home that will most probably involve you getting up at least once in the middle of the night.You will need to help him by turning/repositioning him also so you have to take the broken nights into account when planning any return to work. They let me take over Sophie's nursing after day 3 in hospital so I was prepared for the home nursing which really helped. Thanks
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Old 05-06-2013, 09:20 PM
MAB MAB is offline
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Default Re: What can a parent expect?

Thank you so much Jane .... you have given me so much wonderful advice!
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Old 13-06-2013, 08:37 PM
MAB MAB is offline
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Default Re: What can a parent expect?

Had another specialist appointment today and we now have a date for surgery - Aug 19th. The degree of curvature has increased to 63 so the surgery can't come quick enough now. So glad we have a date to focus on now.

Thanks again to everyone on the forum who has shared their words of wisdom!
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  #10  
Old 16-06-2013, 06:23 PM
Eliz Eliz is offline
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Default Re: What can a parent expect?

Hi MAB,
Good you have a date to focus on and try to put at the back of your mind at the same time!
Will be thinking of you,
Liz
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