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Thread: New to forum

  1. #1
    Join Date
    Jun 2006
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    7

    New to forum

    I'm new here. My daughter Sydney is 16 months old. Although she wasn't diagnosed with idiopathic scoliosis until she was around 6 months old we suspected something was wrong from birth. Her pediatrition noticed her head was tilted right away and believed it was tortocolis. After a few months he became more concerned because her torso bend was very noticable. She also had reflux very badly since birth. After several tests(xrays, mri, ct scan, upper GI) and seeing a ped. orthopedist at Greenville Hospital in SC. she was diagnosed with infantile scoliosis with a curve between 50-60 degrees. She has since been moved to the Shriner's hospital in Greenville(same campus as Greenville hospital). She got her first TLSO in Jan. at 11 months. She wears it 22-23 hrs a day. We returned in april. No change was noticed although it has only been 3 months. With the brace on her bend is corrected to around 30 degrees. We return in August for her next check up. My wife and I have done a little research on the internet and wonder which would be more beneficial bracing or casting. We mentioned casting to the doctor and he said that bracing was the best idea. Any input from those with similar experiences would be greatly appreciated. I have read many of the posts and have found them helpful and comforting. Her doctors say her condition at her age is very rare especially in the states. He said it seems to be most prevalent in the UK for some unknown reason. I look forward to hearing from everyone.

    Jeff

  2. #2
    Join Date
    Jun 2006
    Location
    NYC
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    8
    Welcome to the forum!!!!

  3. #3
    Join Date
    Mar 2004
    Posts
    1,140
    Hi Jeff,

    Did your doctor give you any specific reason as to why bracing would be better than casting for infantile scoliosis? He mentioned that infantile scoliosis is very rare - how many cases has he treated and more importantly.....what was their outcome ? The brace is barely correcting her curve - she is at 30 degrees and will continue to grow more bent as she hits the infantile growth spurt. I would seek a second opinion with a doctor who routinely casts children and ask what kind of results he/she is getting with serial casting for infantile scoliosis. Unfortunately, parents have to weed through a lot of garbage before they get to the truth.
    Last edited by Celia; 06-12-2006 at 09:50 AM.

  4. #4
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Welcome Jeff,

    I agree with Celia. Please consider another opinion. Since you are already part of the Shriners system, please consider contacting the Shriners hospitals in Erie PA or Salt Lake City. Both places have had very good results with serial casting. I think both places would give you a good recommendation for the long term plan.

    Also, you need to know if there are any other underlying issues. Like your ortho mentioned, infantile scoliosis is not a common condition. That makes it more important to have the right specialist taking care of your little one. You need to know if there are any spinal cord issues (a full spine MRI) and you need to know if there are any bone malformations of the spine (congenital scoliosis), etc. I know you mentioned idiopathic scoliosis, but she is still so young that the bones of the spine may not have been fully formed/solid when given that diagnosis. Does she have any other medical issue that would complicate scoliosis treatment? Things like that.

    I wish you the best. Hopefully you'll find another PEDIATRIC ortho that will give you peace of mind in this scoliosis journey.
    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/

  5. #5
    Join Date
    Mar 2006
    Posts
    29
    Jeff
    i have to agree to take it from me you want to find the best you can someone who specalizes in infantile scoli. it's hard to get the right awnsers. don't be afraid to ask a zillion questions and get a second opinion....... we first noticed my sons chest jutting out when he was 6 months old and it to until he was a 1 1/2 to get a diagnosis he's now three and we are still trying to find the best solution. Khyler had a brace it worked well for him at first. but then when he got his second brace it was really uncomfortable for him. you should talk to Deshea she posts on here and her son Lucas has a cast.....
    good luck i will keep you and your family in my prayers

    Corina

  6. #6
    Join Date
    Jun 2006
    Posts
    7
    Thank you for your replies. My wife called me today(I'm on the road working) and told me Sydney has an appointment next week at Shriner's. Her specialist there deals almost entirely with Scoliosis patients. He is actually our second specialist. The first one came highly recommended with a great reputation but he did say that he hadn't seen very many cases of infantile scoliosis. He ordered the spinal MRI and other tests to diagnose congenital or idiopathic. He along with the Shriner's DR. both confirmed it was not congenital. They also did not confer about her condition prior to making the diagnosis. All this being said I felt very comfortable with our doctors credential and experience. However, with all of the information you folks have given me with your experiences I will have many new questions when we go next week. Thank you so much for your experiences and your prayers. I will keep everyone updated and appreciate any more info you have


    Jeff

  7. #7
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    hi jeff,

    welcome to the forum. i think you have gotten very good advice. this is not a common condition and even the most competent scoliosis orthopaedic docs have not treated this condition in infants on a regular basis -- although from some reports it is becoming more common in the us. i would like to share my own journey with my son lucas who is 4 1/2 yrs old and was diagnosed at 18mos at 68o/45o. you are welcome to view my family's website in which i have pictures of the braces and casts that he has been in and our progress. i have it password protected so i would prefer to e-mail that to you privately.

    we travel from boston to the shriners in erie, pa, and we are very pleased with the progress that lucas has made (17o/10o out of cast and 8o/4o in cast). i would hope that you might consider casting as an option. as carmell mentioned, it is currently only being offered at the shriners in salt lake city or erie although there have been some orthos that can be convinced to give it a try.

    please keep us updated!
    deshea

  8. #8
    Join Date
    Mar 2004
    Posts
    1,140
    Jeff,

    I think what we're all trying to say here is that bracing alone will only delay the inevitable - surgery. The outcome for an infant or toddler who has surgery for scoliosis is very different than an adolescent. With casting, there is no guarantee that your daughter's scoliosis will be cured... BUT the chances of her scoliosis being completely/almost corrected are a lot greater. My daughter started out with a 60 degree curve at the age of 19 months and we did serial casting for a few years. It wasn't the greatest thing in the world I admit - the anesthesia was a real scare for us but looking at the overall picture, the alternative was a lot worse. She is now in the Spinecor brace and her inbrace curve is 1 degree. She is now 5 years old going on 15

  9. #9
    Join Date
    Jun 2006
    Posts
    7

    Smile pictures and info

    Deshea and celia,

    I would like to pictures of your kids and their braces if you don't mind. You can email me at jtdimsdale@hotmail.com the web address or info. I want to have as much information and education as I can when we go back to Shriner's next week. Thank you

    jeff

  10. #10
    Join Date
    Jul 2005
    Location
    Columbia, sc
    Posts
    7

    Welcome Jeff

    Jeff, welcome to the forum. I am here to tell you you are in very good hands. Please ask why he feels it is the best idea. I'm sure if they are at the Shriners hospital in Greenville they are very good. They treated me 32 years ago for congenital scoliosis. Iknow it's not the biggest city but the procedures/treatment at the time they used on me were on the cutting edge (sorry no pun intended). I could be more pleased with the quality of life I've had this far becomes of the staff at the Greenville campus. Best of luck, keep us posted and remember there are no dumb questions so ask away, especially the doctors.

    Darwin

  11. #11
    Join Date
    Mar 2004
    Posts
    1,140
    Jeff,

    I can't stress how important it is to get immediate treatment because every day that goes by, could make the prognosis worse for your daughter. I would do a phone application with Erie or Utah and get the ball rolling. Deshea was seeing one of the top orthopaedic surgeons in the country at Boston Children's Hospital which is affiliated with Harvard University and they were clueless as to serial casting - I don't why Here are some pictures of Deirdre - the ones without a brace were taken 4 months post cast removal and she has been wearing the Spinecor brace full time since then.



    http://i41.photobucket.com/albums/e2...Picture144.jpg
    http://i41.photobucket.com/albums/e2...Picture133.jpg
    http://i41.photobucket.com/albums/e2...Picture129.jpg
    http://i41.photobucket.com/albums/e2...Picture135.jpg
    http://i41.photobucket.com/albums/e2...Picture077.jpg
    http://i41.photobucket.com/albums/e2...Picture074.jpg


    Here is one picture of Deirdre shortly before we discovered her scoliosis and the whole journey began.

    http://i41.photobucket.com/albums/e2...5/deordre5.jpg
    Last edited by Celia; 06-16-2006 at 09:01 AM.

  12. #12
    Join Date
    Sep 2003
    Location
    north of boston, ma
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    122
    jeff,

    i wanted to let you know that i did send you a private e-mail with my family's website and some other things

    deshea

  13. #13
    Join Date
    Jun 2006
    Posts
    7

    Thanks

    Deshea and Celia,

    Thanks for the info and photos. We returned to Shriner's this week and I discussed with Dr. Stasikalis, Sydney's Dr., all of the options and what we can expect in the future. I guess in the past we didn't know what to ask and we didn't speak the language. Sydneys curve was around 54 degrees uncorrected and mid 30's with her brace. He did say her RVAD was very bad. He said it was probably in the 80's although he didn't get an exact measurement. We discussed casting vs. bracing. His take was the body doesn't know whether it is being "braced or supported" by plastic or plaster. The big issue is the permanency(is that a word). If the brace provides the needed correction and is worn as directed, 23 hrs a day, you will get the same results. He did once again emphansize that neither is "designed" to correct the condition, but prevent it from getting worse. However, correction is noticed and occurs sometimes from this treatment.
    He did tell us that surgery with a bracing rod was most likely in Sydney's future but probably not until she was at least 6 or 7. This was not a welcome comment for us but was not completely unexpected either.
    When I asked about how much correction we should see from this, he told us that normally they did not want to correct more than 50% of the current curve because of possible neurological damage to spinal cord. Any future surgeries could correct more, another 50% possibly.
    Sydney's curve was about 10 degrees less this visit than it was in April. Whether that was because of the way she was x-rayed or real correction I'm not sure.
    Anyway, that's where we stand now. We go back in August for a checkup and maybe fitting for a new brace.


    Jeff

  14. #14
    Join Date
    Mar 2004
    Posts
    1,140
    "Suffer the children".... does anyone know where that expression comes from

    Here's an interesting study:

    Respiratory Function at Maturity in Infantile-Onset, Non-Congenital, Non-Syndromic Scoliosis

    Caroline J. Goldberg, M.D.
    Children's Research Centre
    Our Lady's Hospital for Sick Children
    Dublin, Ireland

    Imelda Gillic
    Children's Research Centre
    Our Lady's Hospital for Sick Children
    Dublin, Ireland

    Olivia Connaughton
    Children's Research Centre
    Our Lady's Hospital for Sick Children
    Dublin, Ireland



    Abstract from the SRS 2003 Annual Meeting

    Background Data: The natural history of infantile onset scoliosis varies from complete resolution to severe and relentless progression throughout the growth period. Historical studies of untreated cases have shown an increased morbidity and mortality from respiratory compromise in those with severe deformity. Treatment aims to reverse the deforming process and prevent these sequelae. Because the condition is uncommon and results cannot be finally assessed until the end of growth, outcome tends to become lost in the discussion of newer methods.

    Study Design: Prospective review of respiratory function in patients with non-congenital, non-syndromic, scoliosis of infantile onset (before age 4 years) who were at least 15 years old at the time of study. Method: After ethical approval and informed consent, patients with infantile onset scoliosis (N=23, 11 male and 12 female) were recalled for full pulmonary function testing (spirometry, lung volumes, gas diffusion) and surface topography. Results were correlated with radiographic and surface topographic parameters and with treatment history.

    Results: Those whose scoliosis resolved or stabilised at an acceptable stage, (N=6, 1 male, 5 female) with (N=3) or without (N=3) serial casting, had normal cosmesis and pulmonary function at a mean age of 21.1 years (mean FVC=98.83%, FEV1 = 98.7%) Those who were managed by casting or bracing and had avoided surgery until after age 10 (N=6, 3 male, 3 female, mean age at surgery 12.9) had variable cosmesis and good pulmonary function (mean FVC=68.33%, FEV1= 71.5% at a mean age of 20.3 years). Those who received surgery before age 10 (N=11, 7 male, 4 female, mean age at surgery 4.1 years, and at testing 20.5 years) had significant recurrence of deformity and respiratory restriction (mean FVC=41%, range 12-67%, FEV1=41%, range 14 - 72%). In all cases, measures of respiratory function correlated positively with age at surgery and negatively with the most recent Cobb angle and surface topography parameters. DISCUSSION: The aim of early surgery was the preservation of respiratory function, and the control of deformity. It was recommended only for those who were failing to respond to or inappropriate for serial casting, i.e. the malignantly progressive. Those who had the worst prognosis in infancy, now have the worst outcome. While there is variation, there is also a clear pattern of continued progression of deformity after early surgery and a concomitant decline in pulmonary function, such as would be anticipated in an untreated case.

    Conclusion: In this type of scoliosis, numbers will always be small and natural history plays out over a long time, making meaningful assessment difficult. It is not possible to form an opinion on the efficacy of non-operative management, but the evidence suggests that early corrective spinal surgery has not prevented deformity or preserved respiratory function.

  15. #15
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    jeff,

    thanks for the update on your appointment. it's good that the brace that sydney is currently in is bringing down her curve. it's good that she is in something! i hope that she has adjusted well to it.

    i understand what your doctor is saying, but perhaps he hasn't seen a recent paper in the journal of bone and joint surgery about the benefits of casting for infantile scoliosis (and i would like to add a particular form of casting. a lot of orthos think of the old fashioned casting which could cause chest wall deformities. this type of casting does not. not all casting is alike just like not all braces are alike). it is a long term study which is unheard of for infantile scoliosis. i would like to suggest that you send it to him and perhaps discuss it when you have the opportunity. i will send you a pdf file of the paper to your personal e-mail address (if you don't mind).

    my best,
    deshea
    Last edited by desheah; 06-26-2006 at 02:47 PM.

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