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8th June 2007, 08:53 PM
My daughter was diagnosed with scoliosis at the age of 4 as a result of a removal of a part of her tumor wrapped around her spine in march 2006. Her scoliosis was 20 degrees six month ago and today we got the bad news that her scoliosis progressed to 37 degrees. I was absolutely shocked as I didn't expected this at all. Jessie has been through so much since diagnosed with childhood cancer 18 months ago and apart from her surgery, she went through 6 courses of chemotherapy.
Today she was meassured and in three weeks we will pick up her first Boston brace jacket. We hope the brace will help to stop the progression and in future she will avoid any surgery.
If you want to know more about Jessie's fight against childhood cancer please feel free to explore her website on www.caringbridge.org/visit/jessicamagnus
Could anybody give me any tips on how to get through the summer with a Boston brace (especially on what to do on holiday's).
Thank you and all replies much appreciated,
8th June 2007, 09:00 PM
Hi there Stana, welcome to SSO! :welcome2:
I'm really sorry to hear that your daughter has been so ill. Wearing a brace needn't be a great hardship (despite a silly article in one of the UK's tabloid papers today!) - we have quite a few children here who are happily getting on with their lives quite normally in both Boston braces and plaster jackets too
I'm going to split this topic to put your post in a thread of its own so that more people see it - hope that's OK :-)
8th June 2007, 09:25 PM
Stana, Welcome to SSO!
9th June 2007, 09:29 AM
Welcome to a wonderful site!
9th June 2007, 09:39 AM
Hi Stana and welcome to SSO. My daughter is also 4 (going on 12), and is currently in a fibreglass jacket to help keep her curves from progressing. I'm sorry to hear of all you've been through. We had a brace for one summer and there really is no need for concern. You will need some vests to go under the brace (you may want to turn them inside out to stop the seams from digging in). Because you can take it off, you will be able to bathe her and let her cool down. On the odd occasion it gets really hot here in London, we use an a/c unit in her bedroom to allow her to sleep comfortably.
If you have any questions, just shout.
9th June 2007, 12:49 PM
Hi Stana and welcome to SSO
My daughter will be 4 in September and like Andrea's daughter is currently in a plaster jacket although she has had 2 TSLO braces as well.
One of the braces was worn during a hot summer in the US and we didn't experience too many difficulties at all. We did have a fan for her room at night to make her more comfortable. Wearing vests inside out and make sure that they are 100% cotton is also another good tip.
Do you know how long Jessie will have to wear her brace for a day? Niamh had to wear hers for 23 hours a day, so on days when she was not swimming she was allowed to have it off for an hour before bed, but if she was swimming she would have it off for that hour and would just have a stretch and quick wash before bed.
She may find eating a little bit more restrictive as her tummy won't have the room to expand, so little meals and often is the best way.
If I think of anything else I will get back to you
Best of luck
9th June 2007, 03:01 PM
So sorry to hear about Jessie's illness.
This will be my daughter's first summer wearing a brace too so I don't yet have any tips. I have read this thread with interest and hope that we can all help each other out over the next few months (and beyond of course).
10th June 2007, 05:35 PM
I am sorry to hear what your daughter has been through. I have read her story on Caring Bridge. She is a beautiful, brave little girl.
This will be my daughters Lucy's 3rd summer in her brace.
We use some fantastic vests that we got from a company called Gilbert & Mellish. They supply vests especially made for use under a brace. If you look on their website you will find the various contact details. www.gilbert-mellish.co.uk. They are quite expensive but have proven to be worth their weight in gold for making Lucy more comfortable. They are seamless and absorb moisture, drawing it away from the body. They are machine washable and I put them in the tumble dryer. Be sure to tell them it is for a child and ask for a VAT exemption certificate to fill in and you will not have to pay the VAT on them.
On the whole Lucy copes very well with the hot weather, a fan in her room has been useful and loose clothing. She does sometimes get very sore rashes under her brace and we use various different creams to soothe them. The most effective one being DiproBase which we got on prescription from our GP.
When on holiday last year we were more relaxed about how many hours Lucy wore her brace (after first checking with her consultant), especially when on the beach. But there were days when she played on the beach in her brace and just wore shorts and a tee-shirt. We made sure she wasnt overheating by giving her plenty of cold drinks and ice cream - she didnt complain!!
I hope you will find this site useful and a source of comfort, I know I have. There are lots of lovely, friendly and knowledgeable people here.
21st June 2007, 11:25 AM
Thank you for your replies. I will try to buy the special vest that go under the brace.
Jessie will have to wear the brace for 23 hours a day. She goes swimming 3x a week so the brace will be off for a while each day. She also does tummy exercises, ball exercises and yoga almost every day. Her stomach muscles are very weak resulting in a large extended tummy and also lordosis. It's essential she does those exercises every day to keep her fit. They don't get much exercise at school and for some reason they keep canceling the school PE every week.
The doctors mentioned that the brace will weaken her tummy and back muscles even more. Now I am concerned, how is she going to hold her whole body together with all those weak muscles?
On the positive site, Jessie met up with a girl wearing a brace at school and she told her all about it. She came home yesterday telling me: "Mami, do you know you have to wear bigger nickers to put over the brace so it's easier to go to the toilette?" Bless her!!! She seems pretty excited about the brace and I hope it remains once she gets it. It should be sometime next week.
Would anybody know about any yoga centes specialising in children with scoliosis in London?
Thank you and have a nice day.
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