View Full Version : Newly diagnosed

26-04-2014, 08:12 PM

This is a little strange for me, the first forum I've ever joined. It's strange to write something not knowing if anyone will actually read it..

My beautiful little 6yo girl has just been diagnosed with scoliosis measuring 34. We've just had a MRI (sedated) which has put our minds at ease that she's clear from all the scary stuff that can cause a scoliosis. The next step is to visit the Paediatric Orthopaedic Surgeon to discuss bracing, this will happen next week.

By joining this forum I was hoping to connect with parents in a similar circumstance to get some advice on explaining this all to my little girl. (I know we're going to have such difficulties getting her used to her brace, she's so extremely strong minded.) How to go about telling all her friends and class (Grade 1s!) and if there's something specific I should be asking her teachers/school to be watching out for. Obviously, like any parent, I have huge concerns for her regarding bullying and how this will effect her self esteem. She's always been an introvert and since starting school last year she has gained such confidence, it'd break my heart to see her need for a brace to crush that.

26-04-2014, 11:11 PM
I am a teacher and also a mother of a child with scoliosis. My daughter was 9 when she started wearing a brace at school and we did not have any trouble with bullying. We approached it being as open and honest as we could be. We showed the class her X-rays and explained the reasons why she had to wear the brace. The other students were very supportive and always made sure my daughter was ok.
The school was able to accommodate her needs and found her appropriate furniture to use. She was never asked to sit on the floor and the other children never questioned why she was allowed to sit in a different (softer) chair.
Scoliosis is a journey that you take with lots of ups and downs. I'm sure it seems overwhelming for you at the moment but just take one day at a time and you will get through it
My daughter is 12 now and we are 4 1/2 week post operation. It has been a long hard slog but we are now on the other side. It is amazing to see how strong my daughter has been through the whole journey. It is even better to see her standing 6cms taller and beautiful and straight.
Have a read through this forum because there is lots of fantastic information that may help you get a better understanding of the journey you are about to take.
Good luck and keep us posted with update and questions.

29-04-2014, 01:01 PM
Thank you for your reply!
Wonderful news that your daughter is doing so well post op!
Thanks for the tips in regards to speaking with the class, bringing along the X-rays is a great idea. Was it the brace which was stopping your daughter from sitting on the floor, or other reasons due to her scoliosis?

29-04-2014, 08:42 PM
The brace made it difficult for my daughter to sit on the floor. Her classroom teacher made adjustments for her without to much trouble. The hardest thing for her was going to the bathroom. The school opened the disabled toilet so that she could hold on to the rail to sit. My daughter has other issues(such as low tone) that may have impacted on her more than others. You will be amazed at what your daughter will be able to do in her brace. I couldn't believe how well my daughter was able to sleep in it! It took a like while for her to adjust but once she was use to it there didn't seem to be an issue.
I hope this helps. Just take one step at a time and try not to think to far ahead. Sometimes we worried about things that may never happen. Let us know how you get on.