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Thread: Need information on Infantile scoliosis

  1. #1
    Join Date
    Jun 2005
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    3

    Need information on Infantile scoliosis

    Hello Everyone,

    This is my first message and introduction mail for this forum. Myself is Sanjay Malik and i belong to India. My son who is now 11 months, was born with scoliosis and couple of other bony deformaties.

    It was noticed at the time of his birth that he does not appear to be a normal baby, there were some bony deformities visually apparent e.g. CTEV on the right / left feet and extra digit with left little finger (which was removed on 2nd day). He had weak thumb in left hand.

    There was bend in the spine hence the doctors took an X-ray and did the ultrasound just to avoid any other deformity.
    It was analyzed in ultrasound that the child has crossed fused kidneys on left side. on further investigation, it was found that both are working and nothing to be done for it.

    After analyzing the X-Ray, they found out multiple hemi vertebras in spine in cervical, thoracic and lumber regions. with curve bending upto 55 degrees. the second X-ray (when he was 6 months old) showed little improvement and the curve reduced to 34 degree. Now it seems that it is increasing again as the he now started to sit by himself ( he is due for another x-ray in july)

    Right now, we are visiting an orthopedic consultant and POP cast was applied was almost 7 months, then the surgery of the right feet is done just 2 weeks ago under supervision of this consultant. The surgery for the left feet is due in next 2 weeks time.

    I leant from some web information that exercise could help, so if someone can please let me know, if they had similar case? what they did and what did helped them most?

    lastly, if someone can suggest me any clinic / hospital / doctor specialized in scoliosis in INDIA.

    Regards,


    Sanjay Malik

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

    I posted to you under the Waiting and Watching section. Let me know how things are going.
    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
    Mar 2004
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    1,140
    Hi Sanjay,

    I posted this on another thread:

    Did your son's curve resolve on its own to 34 degrees ? Was there anything you did to help him along ? Was he placed in a POP jacket at seven months of age ? Sorry for all the questions.... I do know of a mother whose child has congenital scoliosis. Her daughter has been going to physical therapy for the longest time and the curve ( even though it's congenital ) has reduced from 45 degrees to 24 degree !!! If you like, I could put you in touch with her to find out what kind of exercises her daughter is doing. So far, your son is doing VERY WELL if his congenital curve has reduced from 55 to 34 degrees ! Unfortunately, I don't know of any doctors who practice in India.


    Celia

  4. #4
    Join Date
    Mar 2004
    Posts
    1,140
    Sanjay,

    I looked through the Scoliosis Research Society fellowship and I found one doctor who is a member that practices in India, I don't know if he's close to you.


    Ashok Johari, MD
    702 Dev Kripa, Mogul Lane
    91 22 24 223518/2437
    Off Sitladevi Road
    Mahim Mumbai 400 016
    India




    Celia

  5. #5
    Join Date
    Mar 2006
    Posts
    8
    Hello people i am sayma here,i'm from bangladesh and i'm the new member out here...
    My son have conginetal scoliosis and his curvature is 90 degree up now he is 7 n half yrs old and thats his medical report..

    X-Ray whole spine AP/Lateral with pelvis AP

    >There is dorsolumbar kyphoscoliosis.
    >Multiple conginetal anomalies are present at D11 D12 and L1-L4 vertebrae in form of butterflt,hemivertebra and left pedicles of L2-L4 vertebra are not seen.
    >Multiple conginetal anomalies of ribs are also present.
    >X-ray pelvis shows bones are normal and bilateral hip joints are also normal.

    His MRI findings are suggestive of conginetal anomaliy of the dorsal lumbar vartebrae with kyphoscoliosis. No significant anomaly of the cord.

    And I have been seeing All India Institution of Medical Science for my son since 1 and half year. And they said to do the operation. But I am not quiet sure that I will do my son's operation in AIIMS because I am still in search of far better hospitals in India and I badly need you people's suggestion about the surgery.And 1 thing my son is not having any problems by having scoliosis its just that his height is not increasing that much.By the way what if I dont do the operation of my son will it cause harm to him?Please reply ASAP!!
    Thank you!
    Sayma..

  6. #6
    Join Date
    Aug 2004
    Location
    ny
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    1,750
    Hello Sayma,

    Welcome to the forum. While my son was diagnosed at a young age as well, his was not congenital scoliosis. He is also 7 years old.

    However, there are some folks here (Carmell, in particular, comes to mind) who I'm sure could offer you some very good advice to start. I don't know much about the medical care that is available to you in Bangladesh, but it is so important to find the right pediatric orthopedic surgeon that you feel comfortable with and whom you trust.

    Good luck to you. Keep checking back for responses as I'm sure someone more knowledgeable in congenital scoliosis will be happy to respond to you.
    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
    Mar 2004
    Posts
    1,140
    Hi Sayma,

    I'm not very familiar with congenital scoliosis either - my daughter has the idiopathic variety. I'm really surprised your doctors have waited so long to do surgery on your son - it becomes more difficult to correct a severe rigid deformity. I would look up Dr. Ashok Johari in India or else try to get into one of the Shriners hospitals in the U.S. for the operation ? Their services are free of charge and I think the commute would definitely be worth it.

  8. #8
    Join Date
    Oct 2003
    Location
    Utah
    Posts
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    Hi Sayma,

    Having multiple congenital anomalies like your son has means that he needs to see someone (a pediatric orthopedist) who has treated other children with similar conditions. I'm not sure he'll have the best care possible in India or Bangladesh.

    I read in your post that he has multiple rib anomalies. This is something that may need to be addressed more urgently than the kyphoscoliosis of the thoracolumbar spine. If his chest capacity is reduced, his lungs will not grow to a full mature size, and he will have breathing problems all of his life. By age 8-9, the lung tissue becomes mature and does not respond as well to chest expansion after about age 9-10. If you could come to the USA or somewhere where they have orthos who know how to treat Thoracic Insufficiency issues, you will get a better idea of what the future holds for your son.

    If you choose to do nothing, his spine will continue to curve and progress (I'm assuming his spine is weak from top to bottom, just by the nature of his malformations). Eventually he will LOOK deformed and his internal organs will not have the proper room to function well. Not an optimistic outlook, I know. I hope I am stating the worst-case scenario.

    There is a world-wide listing of docs/hospitals who have experience treating kids like your son (and mine) at http://www.veptr.com/cms.asp?articleid=8 They are in Europe or the USA. I do know of some children who have been treated for severe scoliosis in Turkey, Australia and New Zealand, but I'm not sure if those hospitals are seeing new patients or are even continuing with treatments. I just don't know.

    I'd be happy to share my son's story with you. Feel free to email me, if you'd like. boulderfam@hotmail.com

    My best!
    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/

  9. #9
    Join Date
    Mar 2006
    Posts
    8
    Hey carmell thanks for everything, that webpage link surely held me informations. But i have already mailed shriners hospital before,but they said that they cant take my son.This is why I am seeking for hospitals in India which has good faculties to treat my son..
    But I'm afraid! india in so not good for this and in USA: they r not willing to take my son so i have no other hope.But yes...wht is your opinion about Russia...... because i might have some scope to treat my son at Russia!!is there ne treatment over threre? i heard they have good hospitals...please do tell me your opinion
    thank u !!
    sayma

  10. #10
    Join Date
    Oct 2003
    Location
    Utah
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    Hi Sayma,

    Are you saying the hospitals in the USA won't take him as a patient or are you saying you don't have the money to get here to see the docs at the hospitals? I'm sure they would see him as a patient, if you were able to get to the USA (money). I don't have any recommendations in Russia. I do not know if they have scoliosis specialists, especially for a young child.

    Good luck with your search. I hope you find someone who is willing to help you and your son. I can't begin to imagine how hard it is.
    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/

  11. #11
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,750
    Hi Sayma,

    I agree with Carmell - I'm sure they would accept your son as a patient (I am speaking of Shriners hospitals) since he has a condition that they treat and is under 18 years of age - the only two criteria for acceptance. I know, for instance, that the Philadelphia Shriners Hospital has treated kids from Iraq, Indonesia, and from all over the world.

    Good luck to you and your son. My thoughts and prayers are with you.
    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

  12. #12
    Join Date
    Mar 2006
    Posts
    8
    Hey.... no its not about any money problems. I standed for the visa of USA but got rejected twice. I even applied Shriners Hospital, Lexington but they rejected. Hey mariaf will philadelphia shriners hospital accept my son if I apply there? Or can you do me a favour, I have posted my son's x-ray and MRI report can you please go through it and contact philadelphia shriners hospital and ask them whether my son is in the criteria or not, because last time they said that its cronic(it would be very kind of you if you do it). If their answer is Yes then I'll apply in Shriners Hospital, Philadelphia
    Thank you!
    Sayma

  13. #13
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,750
    Hi Sayma,

    I will certainly see what I can do for you. I am just confused about one thing - are you able to get a Visa and travel to the US? You posted that you were rejected for the Visa so I am a little confused. If you want to email me directly you can do so at mariaf305@yahoo.com.

    I will start tomorrow morning making some phone calls to the Shriners Hospital in Philadelphia. I will do whatever I can, I promise. If I don't hear from you by email, then I will post what I find out from the folks in Philadelphia here.

    Take care,
    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

  14. #14
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,750
    Hi Sayma,

    I've been in touch with someone I know at the Philadelphia Shriners Hospital. They asked me to get from you your son's name, date of birth and approximately what date you applied to the Lexington Shriners Hosptial. This way, I guess, they can look up his application and take it from there.

    I'll check my private e-mail as well (posted above) in case you prefer to send the information there.
    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

  15. #15
    Join Date
    Mar 2006
    Posts
    8

    conginetal kyphoscoliosis

    My son have conginetal scoliosis and his curvature is 90 degree up now he is 11 n half yrs old and thats his medical report..

    X-Ray whole spine AP/Lateral with pelvis AP

    >There is dorsolumbar kyphoscoliosis.
    >Multiple conginetal anomalies are present at D11 D12 and L1-L4 vertebrae in form of butterflt,hemivertebra and left pedicles of L2-L4 vertebra are not seen.
    >Multiple conginetal anomalies of ribs are also present.
    >X-ray pelvis shows bones are normal and bilateral hip joints are also normal.

    His MRI findings are suggestive of conginetal anomaliy of the dorsal lumbar vartebrae with kyphoscoliosis. No significant anomaly of the cord.

    And I have been seeing All India Institution of Medical Science for my son since 1 and half year. And they said to do the operation. But I am not quiet sure that I will do my son's operation in AIIMS because I am still in search of far better hospitals in India and I badly need you people's suggestion about the surgery.And 1 thing my son is not having any problems by having scoliosis its just that his height is not increasing that much.By the way what if I dont do the operation of my son will it cause harm to him?Please reply ASAP!!
    Thank you!
    Sayma..

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