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Thread: Scoliosis - 70% or Greater

  1. #1
    Join Date
    Jan 2009
    Posts
    7

    Post Scoliosis - 70% or Greater

    My granddaughter was diagnosed with scoliosis around 9 months old. At that time, her curve measured 30% and the doctor wanted to watch her every six months. Well, she is now two years old and went from 30% to 70%. A MRI was performed and during the test it was discovered her spine is pressing on other organs; lungs, heart, etc.. The MRI was discontinued 4 minutes early because her oxygen level dropped to 40.

    Within the last year she had pneumonia, bronchitis and several colds.
    I would like to know the seriousness of my granddaughter’s scoliosis. What are the options? I'm really worried. Because I am the grandmother, I do not want to interfere, but I'm really concerned.
    Last edited by eivy1869; 01-11-2009 at 09:27 PM.

  2. #2
    Join Date
    Aug 2006
    Posts
    369
    I don't know about a child your granddaughters age but you may want to check out serial casting on this forum, lots of good info.
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  3. #3
    Join Date
    Jan 2009
    Posts
    7

    Thank you - Christine

    Thank you Christine.

    I read several post regarding serial casting and will pass this on to my daughter. Our family lives in West Palm Beach, FL; a good Infantile Physician referral is appreciated. Thank you.

  4. #4
    Join Date
    Jan 2008
    Location
    NorthCarolina
    Posts
    51
    Sorry to hear about your granddaughter. There is an infantile scoliosis support group that may have more info for you

    "Infantile_Juvenile_Scoliosis@yahoogroups.com"
    Mom to Haley, 13.5 yrs old
    Diagnosed at 6 yrs old - 18T.
    Boston Brace at 9.5 yrs old - 34T/18L
    Switched to SpineCor at 10 yrs old
    Stable at ~22T OBX until 12.5 yrs old
    Adolescent growth spurt was brutal - scheduled for surgery Dec 7th.

  5. #5
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    You are a good grandma to help research and find the best treatment options for your granddaughter.

    Do you know if her scoliosis is congenital (meaning there is at least one vertebrae that is malformed) or idiopathic? Knowing what kind of scoliosis she has may influence the best treatment options for her.

    Does she require oxygen at home? Because she has lung issues, you may hear the term "thoracic insufficiency". This is a general term used when the lung function is compromised. Can be compromised because of scoliosis, or chestwall anomalies, or lung tissue disease, etc.

    My Braydon was born with congenital scoliosis in the thoracic spine. By age 9 months old his curve measured 75 degrees. The doctors (at the time) didn't feel the scoliosis was interfering with his lung function. At age 11 months old they fused that area to keep the curve from progressing. The fusion was successful - no additional curve. However, because of the fusion, his torso is significantly shorter than it should be. This has complicated his breathing. His body compensates well and he does not require oxygen supplements. His current overall lung function is 42% of normal.

    My suggestion for your granddaughter is to get at least one more opinion from a PEDIATRIC orthopedic surgeon who has successfully treated many young children with similar problems. You may want to find someone who is willing to work with a pulmonologist. Dr. Shufflebarger and the team of orthos he works with in Miami may be a good place to start finding better answers. Obviously the treatment option (observation only) hasn't been a good thing so far. You may need to consider taking her out of state to find an orthopedic surgeon willing to give her the recommendations for the best outcome. Her lungs, chest size, overall body balance, predicted issues, etc. all need to be taken into consideration. I'd be happy to share our experiences with you, if you are interested. Feel free to email me at boulderfam @ hotmail . com (remove spaces). Best wishes to your precious little one.
    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/

  6. #6
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,751
    Welcome,

    You have gotten some great advice from Carmell and others. The form of treatment will really depend on an exact diagnosis (meaning: is the scoliosis congenital? is it being caused by some underlying issue? etc.)

    The first step would be to see a good pediatric orthopedic surgeon. As Carmell says, please try to find someone who sees lots of very young children. Many orthos see the typical scoli patient (i.e., teenage girls) but you need someone who specializes in infants and younger children. I don't know of anyone in your area who fits this criteria, but I see that Carmell has recommended someone so I'm sure he's top notch.

    We see Dr. Betz at Shriners in Philadelphia who does see a LOT of complex cases, including infants. There is also another doctor on his staff, Dr. Asghar, who does serial casting and sees lots of infants and juvenile cases as well. In addition to these docs at Shriners, Dr. Michael Vitale in NYC has a particular interest in early onset (infantile) scoliosis as well and those cases make up a significant portion of his practice - but you may want to begin your search closer to home.

    Best of luck to you and please keep us posted.
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  7. #7
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,751
    Sorry, I forgot to mention that you should definitely check out the infantile scoliosis website called "C.A.S.T." or Casting as an Alternative for Scoliosis Treatment. The link is:

    www.infantilescoliosis.org

    Just click on "links" at the top and then scroll down to "CAST". There is a wealth of information there from parents whose children were also diagnosed as infants. They can recomment experts around the country, and give you tons of info and support.
    Last edited by mariaf; 01-09-2009 at 02:42 PM.
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  8. #8
    Join Date
    Jan 2009
    Posts
    7

    Smile Scoliosis 70% or Greater

    Quote Originally Posted by HaleyMom View Post
    Sorry to hear about your granddaughter. There is an infantile scoliosis support group that may have more info for you

    "Infantile_Juvenile_Scoliosis@yahoogroups.com"

    Thank you HaleyMom for the infantile support group.
    Ellen

  9. #9
    Join Date
    Jan 2009
    Posts
    7

    Smile Scoliosis 70% or Greater

    Hello Carmell,

    Quote Originally Posted by Carmell View Post
    You are a good grandma to help research and find the best treatment options for your granddaughter. Thanks for the compliment, grandchildren are special.

    Do you know if her scoliosis is congenital (meaning there is at least one vertebrae that is malformed) or idiopathic? Knowing what kind of scoliosis she has may influence the best treatment options for her. My grandauthers has idiopathic scoliosis.

    Does she require oxygen at home? Because she has lung issues, you may hear the term "thoracic insufficiency". This is a general term used when the lung function is compromised. Can be compromised because of scoliosis, or chestwall anomalies, or lung tissue disease, etc. No, oxygen is not required.

    My suggestion for your granddaughter is to get at least one more opinion from a PEDIATRIC orthopedic surgeon who has successfully treated many young children with similar problems. You may want to find someone who is willing to work with a pulmonologist. Dr. Shufflebarger and the team of orthos he works with in Miami may be a good place to start finding better answers. Obviously the treatment option (observation only) hasn't been a good thing so far. You may need to consider taking her out of state to find an orthopedic surgeon willing to give her the recommendations for the best outcome. Her lungs, chest size, overall body balance, predicted issues, etc. all need to be taken into consideration. I'd be happy to share our experiences with you, if you are interested. Feel free to email me at boulderfam @ hotmail . com (remove spaces). Best wishes to your precious little one.
    Guess what? Dr. Shufflebarger was referred too my daughter at Miami Childrens Hospital; he is highly respected and recommended in South Florida area. My daughter and son-in-law will travel to Miami (approximately 60 miles) Thursday, January 15th. Thank you so much for recommending him, I was so suprised when my daughter returned with Dr. Shufflebarger's name after readying your post.

    Also, I am happy to hear Braydon is doing very well. Best wishes to Braydon and your family.
    Ellen

  10. #10
    Join Date
    Jan 2009
    Posts
    7

    Smile Scoliosis 70% or Greater

    My granddaughter (Rayven) has been referred to Dr. Harry Shufflebarger, MD, Director of the Division of Pediatric Spinal Surgery at Miami Children's Hospital. He comes highly recommended and respected in South Florida area. We are looking forward to his expertise and recommendations. Our family is feeling more confident now that we have a specialist involved. Thanks for all the responses.
    Ellen

  11. #11
    Join Date
    Jan 2009
    Posts
    7

    Smile Scoliosis - 70% or Greater

    Great news. Rayven was seen by Dr. Shuffleberger and no surgery is needed at this time. He will put her in a serial cast in two weeks.

    My daughter is excited because she and the doctor went to Emory University.
    He attended Emory Medical School and she received her an MBA from Emory University. They have a lot in common.

    I will keep everyone updated after the casting.
    Ellen

  12. #12
    Join Date
    Jan 2009
    Posts
    7

    Scoliosis - 70% or Greater

    Rayven had the serial cast put on today. She is very uncomfortable; crying and difficulity walking. Will this get better over time? What about walking, she falls down a lot due to balance?

    The cast is up to her chin and down to waist. We did not expect this much bondage and emotional about her discomfort. This is so hard for us.
    Ellen

  13. #13
    Join Date
    Nov 2005
    Posts
    404
    Please don't worry. It will get better, she will get used to wearing the casts and will adapt very quickly so she can balance and walk naturally again

    I grew up wearing these casts (from the age of 6 months until the age of 10, with Milwaukee bracing from the age of about 4 during the summer months) and although obviously it was nicer to be out of them, I lived with them perfectly comfortably. My first casts went up around my ears, and I learned to walk in them. I'm 33 now and I would be happy to put my own child into casts if they needed it.

    One thing that helped was that my parents were very matter-of-fact about my casts and braces, and so I never thought they were a big deal or anything to get stressed about. I think that parents' attitudes towards these things is very important in how well kids tolerate their treatment, so if you can be as positive about Rayven's cast as possible, I'm sure that will help her

    Good luck!

    Toni xx

  14. #14
    Join Date
    Jan 2009
    Posts
    1

    Smile You wil be fine!

    Hi tonibunny iam holly lans and i live in england, i have got a back brace and when you get used to them they are quite cool!!!!!!!!!!!!!1 all my friends dont mind me having a brace! my friend kristina sometimes tries it on in school!

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