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Thread: 5 year old gymnast

  1. #1
    Join Date
    Aug 2005
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    18

    5 year old gymnast

    My precious 5 year old gymnast was just diagnosed with scoliosis. 30% on the upper spine and 15% in the lower. She's been taking gymnastics for over 2 years and wants to ADD dance, this year.

    I was born clubfooted, so gymnastics and dance were not options for me :-)! I took karate and marched in the band. They were great, but she sure is cute in leotards :-)!

    We are seeing a specialist the end of Sept. I am pure sick, after reading all of the research. The prognosis is "bad" because she is a girl, she is young and her curve is high. I need to know that someone else is out there who is going thru this, or who has already endured this "season".

    Please help!

  2. #2
    Join Date
    Feb 2004
    Location
    Perth, Western Australia, Australia
    Posts
    299
    Christle relax and take a deep breath, you're making me feel stressed just reading your post.

    I know I'm not a Mummy, but I'm an Infantile Idiopathic Scoli baby whose all grown up. I can't imagine though what it's like to be told your child has some kind of medical 'issue' cause I was too young to remember what it felt like. As my Mum told me though what went through her head was 'how could we have missed this'

    There are many things in your daughters favour (trust me there are :-). She's young (an advantage and a disadvantage in the same breath), you have 'caught the curve' so you can now start to 'treat' it, and hopefully have the curve stay stable.

    I read in one of your other posts that you've sent an application into Shriners, whilst I have no personal experience with Shriners being in Australia, i have read nothing but absolute praise and admiration for the Shriners Hospitals.

    With your daughter's curve and her age, they'll probably suggest a brace.....this may be a Nightime only brace (where they over-correct the curve whilst the person is sleeping), a brace worn during the day for a prescribed number of hours, or a brace worn basically '23/7' (although it can range from 16 to 23 hours depending on each individuals situation, curves, doctors preference etc). The decision on which one will be up to the doctor with consultation with you.

    They may also go into a 'wait and watch' and see what the curve does in the next 3 months.

    It might seem like it, but if your daughter goes into the brace, it won't be the end of the world. With careful planning of time out of brace etc there'd be no reason why she couldn't do Gymnastics and add some kind of Dancing into her week.

    The brace will take some time for your daughter to get used to. But children are resilent and soon enough it'll be a part of her and it won't inhibit her from doing anything that she wants to do.

    At the appointment try and take someone with you (whether it be your husband or a friend). The first appointments can be overwhelming and it's good to have someone to listen whilst you ask questions. Then afterwards you can bounce information off each other

    At the appointment the Specialist will probably

    : Visually look at your daughter's back
    : Take X-Rays to determine curvature etc
    : Be able to tell you whether she has Idiopathic (no known cause) or Congential (malformation of bone structure, usually due to a Hemi-Vertebrae)
    : Discuss the 'plan of action' whether it be wait and watch or bracing

    Good Luck

    Alison

  3. #3
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Christle,

    When you go see the specialist (hopefully a PEDIATRIC orthopedist) make sure to have your questions ready. Ask questions that are specific to your daughter. Does she have congenital scoliosis (meaning one or more vertebrae is not formed correctly) or idiopathic scoliosis (meaning the vertebrae are fully formed but curved causing scoliosis)? Does she have any indications there are underlying causes for the scoliosis (i.e., neuromuscular disease, spinal cord issues, etc.)?

    She is very young. She'll eventually need tests to make sure there is nothing causing or contributing to the scoliosis. A full spine MRI would be the first place to start ruling out causes.

    The best news is that for most scoliosis patients, exercise is the best thing! When you see the specialist, make sure to ask if her dancing and gymnastics are still appropriate. They will be great in keeping her back and side muscles strong and supportive to her spine. Exercise is very important.

    Good luck and feel free to ask questions any 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/

  4. #4
    Join Date
    Aug 2005
    Posts
    18

    Thanks to Alison & Carmell

    I took a deep breath and a Prozac and am feeling much better. Did I actually write that? HAHA! I am working in my classroom by day ( I teach little ones who have autism) and researching scoliosis by night. Thank you both for your time and info. My daughter is all up for some exercise. She told me it will make her back stronger and make some of my fat go away :-)! Gotta love those babies! Thanks again! Christle
    Last edited by Christle; 08-22-2005 at 09:30 PM. Reason: typo

  5. #5
    Join Date
    Sep 2005
    Posts
    195
    Cristle,

    I also have a young daughter with scoliosis. She is six now but was five last September when she was diagnosed. Her curve at that time was 28 degres.
    Emily had an MRI done and was found to have a chiari malformation and syrinxes. These are complex disorders which have caused her scoliosis.

    On Nov. 1 of last year she had brain surgery to restore her flow of cerebral spinal fluid. Her recovery was remarkable, mine of course has not been as good. One of the hopes from the surgery was that her spine would become straighter. At the last visit (April) she was at 26 degrees. Next week we will go back to the orthopedic for another xray.

    Through all of this, my daughter has remained in ballet. She only missed the month of Nov. due to her recovery. As a matter of fact, it was the ballet teacher who first noticed that "Emily's hips were a little uneven" .

    Through this entire ordeal, my daughter has led a completely normal life. She has been able to participate in everything any other child does and then some. I am still battling with my worries as to what will happen in the future and am terrified at the thought of having to possibly put her in a brace, but she has not been phased by it.

    I also teach special needs children, though mine are learning disabled.

    I agree 100% with Carmell, insist that a full spine MRI be completed. It is necessary and there are some doctors who do not refer children for one unless there are nuerological issues. My daughter had no nuerological issues. It is well documented that nuerological issues need too be addresses prior to, or concurrent with, scoliosis.

    If you have any questions feel free to email me at travelteem@bellsouth.net

    Michelle
    Sin

  6. #6
    Join Date
    Aug 2005
    Posts
    18

    Update on my Gymnast

    It's been awhile since I posted. We've been to an ortho here, in NC and to the Shriner's in SC. We were thrilled with the Shriner's and have cancelled all of our appts here :-)!

    My daughter's curve is actually 32 and 25 degrees. She will be going through an MRI the end of this month and be fitted for a TLSO. We will pick up the brace the end of Nov and spend a few days with the Shriner's to be sure it fits and that we know how to use it appropriately.

    The doctors here did not request an MRI because they did not expect neurological issues. I was happy that the Shriner's really seem to know what they are doing! They prescribed the brace for our "at home" time. Not 23.5 hours a day, like the ortho here. My daughter is unique. In more ways than just her spine. She is actually excited about the brace and WANTS to wear it at school :-)! HAHA! We will continue gymnastics 2x a week as long as she wants to.

    Thanks so much for all of your information and support. Blessings, Christle

  7. #7
    Join Date
    Jul 2005
    Location
    NY State on border of northeastern PA
    Posts
    20

    Question children adjusting to brace wearing

    Hi Christle! Hope you don't mind my asking, but how is your daughter adjusting to her TLSO? My son Alex just turned 6 and his MRI is in a few days to rule out any problems w/ his spinal chord. (The pediatric ortho doesn't suspect any, but is just being thorough and/or cautious.)

    Anyway, we are expecting to get Alex in a TLSO shortly after his MRI and I just wondered how your daughter is handling and/or adjusting to hers? I'm worried about the psychological impact on Alex and that it will cause him more pain (he's quite a whiny boy about aches and pains of any sort).

    Any advise or suggestions you may have after experiencing a similar situation with your young daughter would be much appreciated. Thank you!

    Kim

  8. #8
    Join Date
    Aug 2005
    Posts
    18

    Plastered

    My daughter was just plastered for her TLSO. It will be pastel blue with butterflies and she is very excited. Me...not so much :-).

    Her MRI revealed a small fluid filled cyst on her upper spinal chord. An appt. is being made to a local neurosurgeon to decide what needs to be done about that.

    I'll write back after our 3 days of rehab at the Shriner's Hospital. We hope to be home in time for Thanksgiving. Best of luck! I'd love to hear the rest of your story. Christle

  9. #9
    Join Date
    Jul 2005
    Location
    NY State on border of northeastern PA
    Posts
    20

    TLSO brace news

    Hi Christle! Hope your Turkey Day was great. Alex's MRI came out ok--no chiari or syrinx and no other abnormalities detected either. So we go next week for him to be plastered for a TLSO brace as well. Wish me luck! Light blue w/ butterflies sounds adorable...don't know if the place where we'll be getting Alex's (Creative Orthotics & Prosthetics) will offer colors or patterns, but I'll inquire as that probably would get him more interested in wearing it. I'd love to hear how your little girl is adjusting to hers--maybe she and Alex could be "brace buddies."

    Anyway, after Alex gets his brace we have to return to the Pediatric Ortho in Syracuse, NY for x-rays in and out of the brace for future comparison to see if the brace is working. I'm not looking forward to another 4 hours in the car in the snow, but we gotta do it.

    I did ask some questions of the ortho and got some more answers as well. His 30 degree S curve is actually a thoracic curve of 30 degrees and a lumbar curve of 28 degrees. And his Risser Score is 0 which is a good indication that the brace will work.

    Gotta go now, but just wanted to let you know the rest of our story and see how your little girl is adjusting. Best of luck to you both.

  10. #10
    Join Date
    Aug 2005
    Posts
    18

    Butterflies on her brace

    Well...we have had the brace for about a week and a half. Cailie Grace is very proud of it. She has shown it to her teachers, friends at church, family members and even a cashier at Walgreens :-).

    The first few days of "weaning" her in were very difficult, but she slept through the night last night (for the first time) with it completely fastened. So in only 10 days, she wore it for 10 hours with no complaints. She was sleeping, but there was no thrashing, no crying, no nightmares. I had been sleeping with her and had been slammed with that thing a few times when she was trying to get comfy :-).

    She is glad when she does not have to wear it (school), but understands when she does. We provide foster care for the Humane Society, so she has seen animals after they have surgery. And she does not want to go through that!

    We have an appointment with a neurosurgeon on Dec. 12. It can't get here fast enough. Best of luck and I hope you can get a fancy TLSO. Cailie Grace tells everyone that she "designed" hers :-).

    Christle

  11. #11
    Join Date
    Mar 2005
    Location
    Kannapolis, North Carolina, near Charlotte
    Posts
    373
    You raised an interesting, sort of humorous issue: sleeping with a bedpartner with a brace. I have shared hotel beds with my 15 year old daughter when she laid on top of my side with the brace on (she wore it for 2 years before her surgery). I had to practically slug her to wake her up and get her to move, because the brace was too hard for me to just push over! Oh, the fond memories!? Kris

  12. #12
    Join Date
    Jul 2005
    Location
    NY State on border of northeastern PA
    Posts
    20

    kids' braces

    Christle--
    Thanks for your update. Sounds like Cailie Grace is adjusting well--I only hope Alex takes to his as well. He picked out a blue brace--the orthotist where we went didn't have one to show us, so not sure what it will look like but Alex wanted blue, so that's what he'll be getting. Didn't offer a pattern, but said he could draw on it or put stickers on it if he wanted to. Should be picking it up sometime next week I think. They keep calling it a "scoli-jacket" so I hope that's the right thing and just their lingo. I guess is does kinda work like a jacket around the body.

    One more question--does Cailie's brace fit under the clothes she already has or did you need to buy new bigger sizes? Just wondering as we just shopped for new clothes before school started in September. He's growing like a weed anyway, so will probably need new ones soon anyway, but just wondered as I've read will need new bigger clothes, but then was told that the new braces are thinner than old ones used to be. Thanks!

    Kris--
    Thanks for the chuckle! Alex will be in his own bed and room, so hopefully I won't be a battered mother once he's weaned into wearing it 22-23 hrs a day.

  13. #13
    Join Date
    Aug 2005
    Posts
    18

    Braces and Big Clothes

    I've always bought larger shirts for my daughter anyway. I hate the little skimpy things that are made for little girls, these days :-)! She loves T-Shirts. I did buy jeans with an elastic waist in a size larger and found a few pair of larger overalls. They did just fine.

    The good news is, that she will not be wearing her brace anymore. We just found out that she has a Chiari Malformation and will have decompression surgery in January. The doctor expects the curve to straighten when the pressure is relieved from her spine. We have been praying for a miracle and believe this to be it.

    I'll keep you posted and be glad to answer any questions that I can. I'm getting ready to post an update with the Chiari information. Wishing you the very best of luck!!!

    Christle

  14. #14
    Join Date
    Aug 2005
    Posts
    18

    My gymnast and the Christmas Miracle

    My light shall break forth like the morning, and my healing shall spring forth speedily. Isaiah 58:8

    When I was pregnant with Cailie Grace, I had a dream, that the Lord was drawing her little body in my womb. I saw His finger trace every little part of her. Her arms, legs, back, feet, head...everything. And everything was perfect and beautiful! I hold onto that dream as a promise!

    Two weeks ago, our choir sang a song that has these words...."He never promised that your cross would not get heavy and your pain would not be hard to bare. Just hold on and He will take you thru the fire again". I've been singing it for 2 weeks. Just ask the folks on my hall at school :-)! This Sunday the message was on unexpected crosses. About how sometimes, we have to endure challenges that we don't want. I was praying at the alter and a friend came to pray with me. She said that she just kept thinking of my dream and God's promise to Cailie Grace.

    Today, the results of Cailie Grace's MRI were finally explained to us. I had questioned the possibility of a Chiari Malformation, in Nov, when we were told there was a cyst. I was told that there was no evidence of that. WRONG! We were also told that there was "a small cyst". WRONG again!

    Our neurosurgeon (who is wonderful) showed us the actual films. In his words, the cyst is "enormous". It is about as long as her head. He said it has probably been there since she was born, but must have grown recently to cause the scoliosis. The cyst was caused by a Chiari Malformation. That means that her skull is pressing on the base of her brain and trapping fluid. She is scheduled for pre-op on Dec. 29, and decompression surgery on Jan 4. The surgery will release the pressure and allow her spine to straighten (IN JESUS NAME).

    I don't understand it all, but I know that God has worked it out. If we hadn't gone to the Shriner's in SC, we would not have had the MRI. Without the MRI, we would have forced her into a brace that she does not need! Without the MRI the pressure could have remained on her brain and spine and could have caused paralysis and neurological damage. GOD IS SOOOO GOOD!!

    We have been praying that Cailie Grace would be delivered from the cyst and she will be!! We have been praying that God would bring this season of scoliosis to an end and He is!!

    We're not through the fire yet, but we know we will be and now we know when!! Patience is not a virtue that I posess :-)! I have great difficulty WAITING upon the Lord :-)!

    Hope you all have a wonderful and truly blessed Christmas!!!!! And best of luck with your cross!

    The McKinneys

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