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Thread: daughter 8yrs scoliosis

  1. #1
    Join Date
    Sep 2003
    Location
    ENGLAND
    Posts
    13

    daughter 8yrs scoliosis

    Hi all,

    My daughter has scoliosis and has a curve of 50 degrees (high thoracic). If anybody wouls like to chat please get in touch.
    She is 8 years of age and we live in England. She is currently wearing the spinecor brace.

    God Bless

    gill
    GILL

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Gill,

    My son, Braydon, is also 8yrs old. Does your daughter have idiopathic scoliosis? How is her breathing? Have the docs done pulminary function tests to see if her scoliosis is affecting her lung function?

    Braydon has congenital scoliosis. His congenital curve is a thoracic curve measuring 65 degrees. At 11 months old, he had that part of his spine fused, so it's very solid and rigid. At age 6, Braydon had two vertical rods implanted to improve the size and capacity of his right lung. He has gone from less than 50% lung function to 71% lung function in 2 years. He also has benefited from having the rod placement surgery by allowing his hips to be level, his head/neck and pelvis are well-aligned, etc. He is doing very well!

    I'd love to touch base with you, if you have time.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  3. #3
    Join Date
    Sep 2003
    Location
    ENGLAND
    Posts
    13

    reply to carmell

    Hi Carmell,

    We don't know much about this, but I'm told because of the degree of curvature she has, she probably has been born with Scoliosis. I feel very guilty that I did not notice this.
    We took the to the doctors this summer because she was complaining that her heart was hurting. I asked her to tell me what she meant of hurting and she said it felt very heavy and that something was resting on her heart. I thought thats strange for her to come out and say such a thing so it was her GP who noticed and referred us to see a paedatriction at our local hospital. She then went on to have x-rays and then referred to Sheffield Childrens Hospital when it was there we saw a orthopedic surgeon. He then took further x-rays and told us her curve was 50 degrees (high thoracic). We then had to wait for her to be braced she wears a spincor and is having a few problems. She hates it. She doesnt want anybody so see what she has on. She has gone from been a little girl wearing pretty dresses to a girl in tracksuits. That tears my heart. We have tried to be reassuring but she is so vain. She looks in the mirror and cries, but its early days yet she has only wore the brace for 2 weeks. With the brace on she is 38 degrees so its a must that she wears this. We have been referred for a MRI scan, so hopefully we will know more then. Keep in touch. I hope Braydon is doing ok. If you would like to e-mail me please do on thebratbybunch@aol.com thebratbybunch@aol.com
    GILL

  4. #4
    Join Date
    Feb 2004
    Location
    Massachusetts
    Posts
    4

    I have a & year old w/ Idiopatic Scoliosis

    Hi Gill
    I've never posted anything on these sites before -- but I'll give it a chance.
    I have a daughter with scoliosis who is now 7, and has about a 25 degree curve. She was diagnosed just before she turned 6 and has been braced for about a year now. Originally they told us to brace for 23 hours which was so daunting !! She has it on about 16 hours/ day and she's holding steady. I still feel very new to it all!! And I do worry about the long term -- physically (the curve getting worse) as well as socially (the "girly" things (clothes etc) AND "fitting in" and feeling different about herself) She's a trooper and has her ups and downs. Her biggest complaint is that seems so unfair since no one else needs to wear it -- it does make her feel different -- and my heart breaks for her!!

    My husband's sister was found to have a curve at the age of 11 and had surgery ( Harrington Rod) by the time she was 13. She strongly encourages her to continue to wear it because the surgery was hard at that age (both physically and socially) She's now 34, and has 2 kids. Her back is painful due to some complications from the rod (and a car accident)

    I was also wondering if anyone else has a family history with idiopathic scoliosis. My doctor told me today that my daughter's scoliosis is much more common in England than it has been in America -- which is the first we heard of that !! (and interestingly enough my husband's family moved here from England in the 60s)

    I hope you daughter is adjusting well.

  5. #5
    Join Date
    Apr 2004
    Location
    Douglaston, NYC
    Posts
    10

    scoliosis in brace at age 6

    My daughter is 6 and has upper body scolosis and wears a brace 12 hours a day. When I was told my daughter had to go in a brace at age 4 I begged the doctor to allow her to wear the brace after school and to bed they said we could try it and fortunatly it helped enough.

    I live in nyc, usa

    I would love to chat.

    Nora
    Lindsey's Mom

  6. #6
    Join Date
    Sep 2003
    Location
    ENGLAND
    Posts
    13
    Hi Nora,

    I'm glad to hear that your daughter has responded to her brace. Unfortuanatley, we dont fall in that catergory. Beth, my daughter is to have surgery. After a second opinion we have opted for the growth rods. At this moment we are just waiting to hear, although the surgeon who we saw in Feb, has said she is scheduled for June this year.
    I would also love to keep in touch,

    Gill
    GILL

  7. #7
    Join Date
    Apr 2004
    Location
    Douglaston, NYC
    Posts
    10
    Dear Gill,

    Thanks for answering my post. I'm sure the surgery is very scary but I've heard a lot of success stories and hopefully your daughter will be one of them. That's great that you got a second oponion. I'm interested in hearing about the surgery because at some point Lindsey might be needing in.

    Nora
    Lindsey's Mom

  8. #8
    Join Date
    Sep 2003
    Location
    ENGLAND
    Posts
    13
    Hi Nora,

    I will keep you posted, What type of brace does your little girl wear?
    What degree of curvature does she have?

    Speak soon,

    Gill

    YOu can e-mail me on thebratbybunch@aol.com
    GILL

  9. #9
    Join Date
    Apr 2004
    Location
    Brush, Colorado
    Posts
    89
    Hello Gill,

    Lindsey's mom said she hoped your little girl would be one of the success stories. Well, I am one. I had sever scoliosis and kyphosis. At age 12 it wasn't bad and at age 13 it was very very bad. Your little one is probably scared right now. I thought some advice would help her. Encourage her to ask any and all questions. THis is frightening and there are no stupid questions. All the doctor visits are probably overwhelming, so try to get her to talk or draw about her feelings. I kept mineinside, not a good thing! Also let her know that it's okay to be a baby about the pain. Not everyone is brave, or has to be. The tour of the hospital is very frightening, but necessary. Talk to her about it before hand. Get info about the surgery and discuss it with her. The more she understands the easier surgery time is. Ans let her know that things do turn out okay. I'm 28 now and own my own store. I also have perfect posture that many women are jealous of! If I can give any comfort about what's happening I'd be glad to!

    God Bless, Mary

  10. #10
    Join Date
    Jan 2005
    Location
    San Jose, California
    Posts
    6

    Referral help

    Hi Everyone!

    I just joined this site yesterday. I have a 7 year old niece who was diagnosed 5 months ago with juvenile scoliosis. There are no doctors in our area (we live near San Francisco), even at Standord Medical Center or USCF Medical Center, that have experience with a child in this younger age group. My family is desperate to find a doctor (we'll travel anywhere we need to go) with the right experience. Gil, I am curious as to whether England may have the most experience with this condition. Can you suggest someone on your side of the pond? Mary, Nora and Carmel, do you have any doctors that you could suggest for us? I hope your children are doing well. This is a little overwhelming at this point for my family. My niece is an amazing athlete (she's a gymnast, plays soccer and basketball, and runs like a little gazelle), and looks and acts completely normal at this stage, so it's hard to imagine that she has this going on inside her. Any help/info that any of you could provide would be very much appreciated.

    Thank you so much,

    Leigh Goldstein

  11. #11
    Join Date
    Apr 2004
    Location
    Brush, Colorado
    Posts
    89
    Hi! The doctor that I went to is named Dr Thomas Lowe who's at Lutheran Mediacl Center in Wheatridge Colorado. He's been very active in research and work on treatments of children with scoliosis. If you'd like I could look up his address and phone and post it for you.

    God Bless!

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