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Thread: Daughter recently diagnosed, just starting treatment

  1. #1
    Join Date
    Mar 2011
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    Daughter recently diagnosed, just starting treatment

    Hi! My daughter Sabrina is 9 1/2 so technically in the Juvenile category but the doctors have labelled her as Adolescent. She was diagnosed at the end of February and since that time we have seen 3 different doctors and have an appointment with a fourth in Houston next week.

    We have taken the Scolioscore test but do not have results yet. I have not made up my mind how I feel about that test.

    For now the consensus among the doctors we have seen is to put her in a Charleston brace overnight. We will check her again in 3 months to see if her curves have held. If not, we will re-evaulate that decision and explore other options (VBS, TSLO, etc).

    She went to get measured today for the brace and it will come in about 2-3 weeks from now. In the interim, I am trying to figure out how to make this as comfortable as possible for her.

    Does anyone have experience on what I can do to help her through this transition into a nighttime brace? I read somewhere about Under Armor. Is this the best kind of "nightgown"? How about body pillows? Mattress toppers? Any suggestions?

    I am not sure where our journey will take us long term but it is definitely going to be a journey.

    Thanks again for your help and my apologies if I posted on the wrong forum.

    Mati

  2. #2
    Join Date
    Jan 2008
    Location
    NC
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    8,901
    Sorry about the diagnosis.

    My one kid wore a Charleston. As I recall, I gave her some pain meds during the first few days. And I don't know if she had it at the right tightness setting at first. I think she worked up to that.

    I'm sorry but that's all I remember.

    I can say that she got so used to it that she had trouble sleeping when she didn't wear it the night before a radiograph. That was before we were told it is unnecessary to remove a night-time brace 24-48 hours before a radiograph.

    We brought the brace on trips and on planes. She wore it for a year.

    Good luck.
    Last edited by Pooka1; 03-28-2011 at 07:37 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
    Join Date
    Mar 2009
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    Hi Mati,

    Wow, it's nice that you actually got a consensus with your orthopedists, lol!

    My daughter was also prescribed a Charleston bending brace when she was first diagnosed and it was a very successful brace for my daughter. It is very nice for your daughter that she has been prescribed a nighttime brace. It is the easiest type of brace for kids to wear since they don't have to wear it around other people and they keep their muscles in shape. Night bracing is also used a lot in hot climates like Texas, because an unused brace due to heat is a significant factor in braces not getting good results. It is also very good that she will be checked in a few months to see if the brace is halting the progression.

    My daughter had a fairly easy time getting used to this brace. I think the orthotist said to slowly break in over a period of a week or so, but she was good in two or three days time, but she also has a very flexible spine so it may be different for your daughter. It is uncomfortable for them the first few days and they don't need to wear it the whole night during the breaking-in period. Your orthotist will give you directions.

    My daughter was given soft shirts to wear from the orthotist, but my daughter never did wear them. She was happy choosing her own soft shirts to wear with jammie bottoms under the brace. A soft "Sponge-Bob" t-shirt was what she usually wore. She didn't need any special pillows or mattress toppers, but everyone's different.

    Good luck on your journey, let us know how it goes.

  4. #4
    Join Date
    Nov 2010
    Location
    San Diego, CA
    Posts
    104
    My daughter wears a TLSO but the under the brace T-Shirt is about the same, most important thing is that they are seamless. She does use Knit Rite undershirts that our orthotist provided but sometimes they leave the woven pattern on her tummy. She really prefers the Full Tilt Seamless Cami (available on line, $7 each and lots of fun colors) My daughter is 8 1/2 and 60 pounds. We've found the Full Tilt adult one size fits all to work best in that it comes high enough under her arms and down past her hips. I tie the two spaghetti straps together in the back so it stays up high enough under her arms.

    We also found it helpful to lavish her with as many soft cozy fabrics as we could in her bedding and clothes. She really enjoys the sensation of soft /plush on her skin even more since getting the brace.

    I also sought out books about young girls who have overcome a difficult situation, not necessarily Scoli. I wanted to empower her, let her know she was not the only one going through a difficult time. Esparanza Rising was my favorite. I read it aloud to my girls. I'd also recommend Wilma Rudolph, Olympic Runner about a girl who overcame Polio and a leg brace to win a gold medal for running.

    Best Wishes to you and your daughter as you go through this difficult time.
    Resilience

    treated w Milwaukee Brace FT for 3 yrs
    currently 46 with 35 LL and 40 RT curves

    8 yr old diagnosed w Scoli 8/10 with 27 LL and 27 RT
    11/10 TLSO Full Time
    4/11 22 LL and 24 RT on waiting list for VBS at Shriners Phila
    12/11 curves still in the 20s but now has some rib cage changes from the brace
    VBS 4/25/12 with Dr. Samdani. Pre Op: 29 RT and 25 LL Post Op: 17 RT and 9 LL
    10/13: 15 RT and 10 LL

  5. #5
    Join Date
    Oct 2008
    Posts
    299
    My daughter started with a Providence night-time brace around age 7 and she had no trouble getting used to that. Slept through fully tightened from the first night with no issues, maybe some rashing here and there that was not too hard to deal with. She likes the knit-rite shirts, and did not like off the rack camis, but I think it's very much a personal preference with each kid so experiment if whatever you're using is not comfortable. Mine did not have a mattress topper in the beginning and was fine but we did get one for her after a couple months and she likes it a lot. I think we got ours at overstock.com.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  6. #6
    Join Date
    Mar 2011
    Posts
    9
    Thanks for all of the advice and feedback!

    We are going to buy her a body pillow just because she wants one and will look for an under armour shirt here at the local Sports Authority but am guessing I won't know what else needs to be done until we get the brace and she starts to sleep with it.

    This is a great forum and I am so glad I found you guys! I am sure I will have many more questions as we continue figuring out her treatment.

    Thanks again!
    Mati

  7. #7
    Join Date
    Mar 2011
    Posts
    9
    Resilience -- thanks for the tips on the books. I have stumbled across several on Amazon that are about scoliosis but haven't bought any yet but will also look at other books just overcoming adversity.

    I honestly don't know how long she will be in the brace. If her scolioscore is low, we will reconsider bracing her (with doctor agreement). If her scolioscore is high, we may consider VBS which would probably mean bracing her until the surgery is scheduled. I think we are still up in the air with it all. We are meeting with Dr Marco in Houston next week to see if he agrees with the approach Dr Shapiro and Dr Geck gave us. We did not like Dr Shapiro at all but loved Dr Geck and will continue using him for her treatment unless Dr Marco has a different plan that we have more confidence in. I like the idea of a local doctor (we are in Austin) rather than going to Houston but of course, will do what is best for her.

  8. #8
    Join Date
    May 2010
    Location
    Yuma, AZ
    Posts
    30

    Smile Charleston -

    My daughter was prescribed a Charleston brace for 12-14 hrs daily in June 2011. When we started she was at a 56 degree curve, and after three months, she progressed to a 66 I think it was, so in late SEptember it was decided that the brace could be discontinued and she would have surgery December 13. By the time December rolled around, she was a 78 degree curve.

    She hate the brace but wore it as required. She did the seamless cammies and used pillows to help support... we just made her as comfortable as we could... that's all you can do! That and encourage her!

    My daughter got on this forum (under the kids area) and SpineKids forum, which is for the kids and it really helped. PLUS, we found another girl in town (we're in a small town mind you) that was having surgery 2 weeks prior to hers was scheduled. The moral support really really helped!

    It's rough but amazing how much these kids can handle! Sometimes more than we can! What is your daughters curvature?

    Jen

  9. #9
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    Mar 2009
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    Quote Originally Posted by jennilynn View Post
    My daughter was prescribed a Charleston brace for 12-14 hrs daily in June 2011. When we started she was at a 56 degree curve, and after three months, she progressed to a 66 I think it was, so in late SEptember it was decided that the brace could be discontinued and she would have surgery December 13. By the time December rolled around, she was a 78 degree curve.
    Jen
    I'm surprised your daughter would have been prescribed the Charleston brace. It's only recomended for curves up to 35 degrees maximum. Was the doctor just trying to slow down the progression?

    Actually, I see you're in Arizona. No doubt they figured it was too hot to wear a full-time TLSO.

  10. #10
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    May 2010
    Location
    Yuma, AZ
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    30

    Red face

    Quote Originally Posted by Ballet Mom View Post
    I'm surprised your daughter would have been prescribed the Charleston brace. It's only recomended for curves up to 35 degrees maximum. Was the doctor just trying to slow down the progression?

    Actually, I see you're in Arizona. No doubt they figured it was too hot to wear a full-time TLSO.

    Yes, he was trying to slow it down thinking she needed a gross spurt to get over with.
    What we did find out later is that this particular doc was not keen on surgery in the early fall... his scoliosis practice sort of takes a back seat to his sports medicine stuff in the fall.... The new doc in SD at RAdy Childrens did some xrays and MRIs to see the growth patterns and plates and said she could have and most likely looking at the xrays from our first visit, should have had surgery soon after diagnosis. Lesson learned - But she's done so well after surgery, I really dont' care... she's well, she's happy!! What more could a parent ask for!??

    (And yes, her in a TLSO in 120 degree heat? YIKES!)

  11. #11
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    Mar 2009
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    Quote Originally Posted by jennilynn View Post
    But she's done so well after surgery, I really dont' care... she's well, she's happy!! What more could a parent ask for!??

    (And yes, her in a TLSO in 120 degree heat? YIKES!)
    Congrats on a successful outcome to her surgery! :-)

  12. #12
    Join Date
    Apr 2011
    Posts
    2

    Smile Good Results from Surgery

    My Daughter Sarah was diagnosed with scoliosis at the each of 10. She was watched for 5 years, then she had surgery for T4 to L3. Dr. Paul Rubery at Strong Memorial hospital in Rochester NY did her surgery. Sarah has been playing competive soccer since she was 6 years old. Her biggest questions to Dr. Rubery was will she be able to play competive soccer again, the answer was YES. She returned to soccer 7 months after surgery, and was able to play her third year varsity soccer for her school , before she tore her ACL during a varsity soccer game. She had an approximately 55-60% curve when the surgery was done. The surgery day was the longest day of our lives 7 hours, she spent a week at the hospital, month out of school. She is doing great now. Before surgery you could see the physical changes big time. She would tell anyone to get the surgery, she had the brace for 3 months and hated it. Good luck Sarah's mom

  13. #13
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Thanks for sharing Sarah's story. I'm sure it will be comforting to anyone facing surgery. Some kids are passionate about a particular sport and I think it's great. For my son, it's baseball. Our little league season opens on Tuesday and has been counting the days. (Sorry to hear she tore her ACL).
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

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