Results 1 to 8 of 8

Thread: Infantile Idiopathic Scoliosis

  1. #1
    Join Date
    Sep 2006
    Location
    Jamestown, NY
    Posts
    12

    Exclamation Infantile Idiopathic Scoliosis

    My 3 1/2 year old son, Matthew, was diagnosed with scoliosis about 2 years ago. He was born at 27 weeks and has seen his share of problems. He is currently being tested for connective tissue disease and getting tested for genetic disorders. He has had 3 Boston braces which he always seemed to get out of. We decided to try the body cast. His xray before the cast showed him with a 73% curvature. Corrected, it was at 70%. We are currently on his third cast (every 6 weeks) and the curve has worsened to a 79% curve.
    What bothers me, is that the doctor is really stunned and seems as if he isn't sure to do the surgery or continue with the casts.
    Matthew is very petite, 2'11" and only 25 lbs. We definitely want him to grow before having the surgery, but when do you let go and tell them to go ahead with it?

    Should we get another opinion?? I'm checking out the Shriners in Erie, PA.
    Does anyone know of an Orthopaedic or spine specialist that specialize in Scoliosis in NY (Upstate/Rochester-Buffalo area)??
    Any suggestions would be very grateful!

    Thank you
    Sue
    Sue


  2. #2
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    hi sue,

    my son lucas who is now near 5 yrs old was diagnosed with infantile scoliosis at 18 mos. at that time, he had an s curve of 68o/45o. we tried bracing with a tlso during the day and a charleston bending brace at night for a year, but unfortunately, his curve went down initially and then increased again into the 50os. from 2 1/2 to 4 1/2 yrs old, he went through serial plaster casts at erie, pa by dr. sanders and had changes every 3 to 4 months. we live north of boston, ma so we had to travel quite a distance to get this treatment. i do not regret it at all. in fact, if we had not gone through with casting, i believe that my son would have had surgery. now he is in a brace again (a spinecor this time in which we travel to montreal), but he is 18o/14o -- a point where it is more a cosmetic issue and not a life-threatening one compromising heart and lung function. of course, we are not out of the woods, and he has a lot of growing left to do, but we are happy and more importantly he is happy.

    okay, that's our story. i would very very highly recommend dr. sanders and the other orthos at erie (dr. khoury and dr. kishan) for a second opinion. actually, dr. sanders is the fourth doctor that we went to for an opinion. especially when surgery is involved! in my opinion (and of course, that's all it is), i would be very leary of surgery at your son's age. it really should be a last resort.

    may i ask you a question? the casts that your current ortho are applying, is it done under anaesthesia? it seems like the correction that he's getting is not very substantial. also, he is changing it very frequently which is not following the current "protocol" for applying casts. i'll attach a file (you need adobe acrobat reader) that is written by miss mehta, the ortho from the uk, that has advocated serial plaster casting to correct infantile scoliosis. also, i will privately e-mail you lucas' scoliosis webpage so that you can take a look at his casts which are the ones that they apply at erie with really good results.

    i don't mean to overwhelm you, but i really want you to get a second opinion and since you are so close to erie (relatively, of course), then it would be your best option.

    my best,
    deshea

    p.s. i tried to attach the file with no luck. i would be happy to e-mail it to you, if you are interested. i will privately e-mail you (through nsf) lucas' website.

  3. #3
    Join Date
    Sep 2006
    Location
    Jamestown, NY
    Posts
    12

    Infantile Idiopathic scholiosis

    Hi Deschea,

    Thanks so much for the information! I called this morning to Shriners and they are sending me an application and information. The first cast was going to be put on under anesthesia but my son's asthma was flaring up and they wouldn't do it. Matt is very patient and stood very still for them to put it on. They have been changing it every 4-6 weeks and it's done in our orthopaedics office. If you could send me that information, I would really appreciate it. suziblui@yahoo.com.
    Thanks so much,
    Sue
    Sue


  4. #4
    Join Date
    Mar 2004
    Posts
    1,140
    Hi Susan,

    It's necessary for the child to go under general anesthesia when the cast is applied. For some reason the muscles become very relaxed and doctors are able to get better correction versus a conventional brace, this of course really depends on the flexibility of your son's spine and given the size of his curve.... casting may only delay the inevitable. If he has some kind of connective tissue disorder it may be contributing to the rigidity of the spine I always thought children with lax ligaments were very flexible ????? Anyway.....once you get a consult with dr. Sanders I'm sure you'll have more answers. I agree with Deshea that surgery should only be considered as a very last resort for these little ones. My message to you is....don't give up hope !!!!!

  5. #5
    Join Date
    May 2005
    Posts
    776
    stood very still for them to put it on
    I suppose that standing rather than laying flat would have worked against a significant correction

  6. #6
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    sue,

    i sent you a private e-mail to your yahoo address. i hope that you will be able to access the webpage.

    i'm very happy that you are in the process of getting an opinion from the erie shriners.

    as celia mentioned, anaesthesia is the way to go with casting to get the most correction as well as not changing the cast as frequently (every 3-4 months).

    anyway, look for my e-mail.

    deshea

  7. #7
    Join Date
    Sep 2006
    Location
    Jamestown, NY
    Posts
    12

    Smile Thanks to everyone who has responded.

    Thanks to everyone who has responded. I am patiently waiting for the paperwork from the Erie Shriners and in October when he gets his cast off, were going for another opinion with a spine specialist who specializes in scoliosis.
    Thanks again
    Sue


  8. #8
    Join Date
    Aug 2006
    Location
    Kalispell, MT
    Posts
    9
    Sue,

    Our son Noah just got his first Risser cast at the Salt Lake City Shriner Hospital. He was corrected from 78 degrees to 28 degrees in the cast. If your son is still flexable in the spine a cast applied correctly should help. Please do see the Shriners, they have it together and are on the right track in my opinion.

    Good luck and we look forward to hearing good news about Matt.

    Ken

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •