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Thread: Son Evan (12 MONTHS)

  1. #1
    Join Date
    Nov 2003
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    1

    Son Evan (12 MONTHS)

    My son Evan was diagnosed with idiopathic infantile scoliosis at the age of 6 months (4-01-03). At the time of diagnosis he had a 38 degree left thoracic curve measuring from t4 to t8. A MRI revealed no abnormalities.

    We are currently being treated by an orthopedic surgeon at Chidren's Hospital in Boston, Massachusetts. His decision was to watch the curve over a period of a few months. After taking a series of x-rays over a 5 month period the curve had shown no change. At this time (9-11-03) a Charleston Bending brace was recommended to be worn at night.

    At our most recent visit (10-31-03) an x-ray was taken in the brace which reduced the curve to 22 degrees. Our doctor decided that it would be a good idea to add a Boston Brace to be worn during the day. We are currently waiting for it to be made.

    Although my son's curve hasn't worsened the doctor feels it is going to be progressive despite their best efforts. I have started to take him for Chiropractic care along with physical therapy hoping that something might help.

    I would appreciate any feedback regarding success with treatments used by other orthopedics or alternative therapies.

    Thank you,
    Lauren

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

    I think one of the hardest things we, as parents, have to deal with is the emotional effects of having an infant with scoliosis. Scoliosis is a condition that the patient (and family) will live with forever. Getting an emotional handle on the long term "game plan" and recommendations is very important. This is something that can be very overwhelming, especially when there isn't a quick-fix for the problem.

    Boston has a very good team of pediatric orthopedists. You should be in great hands there.

    Chiropractic care won't "fix" Evan's spine, but it could help the weak side muscles and soft tissue. There are several exercises you could do with him to help build up that weaker side and keep it strong for brace wearing. Let me know if you are interested and I'll post them or email them to you.

    I hope the docs are wrong and that Evan's scoliosis won't need surgery. Keep us posted.
    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
    Sep 2003
    Location
    Michigan
    Posts
    5
    Lauren -

    My son, Dylan, was also diagnosed at a very young age (2 months) with a curve of 40 degrees. We believed his scoliosis to be idiopathic at first, but as he grew it became apparent he had some fused vertebrae. But, even after surgery for that (at 6 months old), his back is curving and we don't know why now. So I consider him congenital/idiopathic.

    It is great news that the brace is controlling the curve! I know it is hard to deal with a health problem with a child. As parents we want our children to have a trouble/worry-free childhood. Try to be reassured by the brace working and not worry about the future. It bothers me that your doctor told you to expect it to worsen. I'm not saying they should leave you in the dark, but it doesn't help your family to worry about the "maybes." If the curve isn't worsening now, that's great! We try to take it one day at a time, focus on how well Dylan is doing now (sometimes it's not easy). But, it makes things easier for us and Dylan.

    Dylan is 3 now and eventhough he has been through more than most adults, he has a great attitude. He doesn't see himself as any different from any other 3 year old. When another child points to his brace and asks "what's that?" he just matter of factly states, "my brace." When they ask why he wears it, he tells them because he had surgery on his back, like it is the most normal thing in the world. He doesn't know any other life, so he is happy. The same will be true for your son.

    Take care.

    Penny
    Penny
    Mom of Dylan, 3 years old, 4 surgeries, diagnosed at 2 months

  4. #4
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    Sep 2003
    Location
    north of boston, ma
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    Re: Son Evan (12 MONTHS)

    hi lauren,

    my son lucas is also being treated at children's in boston. who is your ortho? we are seeing dr. hedequist. lucas is almost 2, and we have him in a tlso/boston brace during the day and a charleston bending brace at night only for the last month. actually, we had to request a more progressive treatment after getting a 3rd opinion because it was recommended that he only be braced with the tlso/boston during naps and nighttime at children's and shriners in springfield. we will go back in in 2 weeks to get an x-ray out of the brace to see how he's doing. this will be his first x-ray since he was diagnosed in may of this year.

    as with the other posters, i don't know why they said that evan's scoliosis will worsen. maybe they have done a rib vertebral angle (rva) measurement and based it on that. they do tend to be really conservative in the judgement there. i think that they don't want you to get your hopes up in case things get worse. although a good mindset can do wonders! we just went through spinal detethering surgery for a fatty filum on 9/17 at children's, and they wouldn't even definitely tell us if lucas had this for sure. it was up to us to go through with the surgery. we felt that if this was causing his scoliosis then we had to do it otherwise bracing would be pointless. as it ends up, the neurosurgeon told us after the surgery that it was one of the tightest filums that he's ever seen. yikes! but good news since that could mean that it is the cause of his scoliosis, but you would think that they would have been more definitive from the start based on the mri. anyway, sorry to rant!

    i would love to keep updated on evan's treatment. feel free to e-mail me directly if you want to talk.

    deshea
    north of boston, ma
    mom to lucas almost 2yo otherwise happy and healthy child with scoliosis (68o and 34o)
    http://homepage.mac.com/desheaharris/
    ** i have some brace pictures until the scoliosis tab

    Originally posted by LGIGGEY
    My son Evan was diagnosed with idiopathic infantile scoliosis at the age of 6 months (4-01-03). At the time of diagnosis he had a 38 degree left thoracic curve measuring from t4 to t8. A MRI revealed no abnormalities.

    We are currently being treated by an orthopedic surgeon at Chidren's Hospital in Boston, Massachusetts. His decision was to watch the curve over a period of a few months. After taking a series of x-rays over a 5 month period the curve had shown no change. At this time (9-11-03) a Charleston Bending brace was recommended to be worn at night.

    At our most recent visit (10-31-03) an x-ray was taken in the brace which reduced the curve to 22 degrees. Our doctor decided that it would be a good idea to add a Boston Brace to be worn during the day. We are currently waiting for it to be made.

    Although my son's curve hasn't worsened the doctor feels it is going to be progressive despite their best efforts. I have started to take him for Chiropractic care along with physical therapy hoping that something might help.

    I would appreciate any feedback regarding success with treatments used by other orthopedics or alternative therapies.

    Thank you,
    Lauren

  5. #5
    Join Date
    Mar 2004
    Location
    Maine
    Posts
    28
    Lauren,

    I have a daughter named Lauren. She was diagnosed with scoliosis when she was 7 months old. She has been wearing a TLSO Boston Brace for between 16 and 23 hours since that time. Her curve was 54 degrees initially. The last time she had an x-ray it was in the 30s thoracic and 20s lumbar. I noticed that your child's curve was also a left thoracic curve. I wonder if left curves are more common with infants? My daughter was breech and born by c-section. I'd be happy to talk with you further.

    Ann

  6. #6
    Join Date
    Feb 2004
    Location
    Perth, Western Australia, Australia
    Posts
    299
    It is an interesting thought, whether left curves are more common in infants. I was born in scotland, diagnosed with Infantile Idiopathic Scoliosis at fifteen months of age, top curve going to the left in the high sixties bottom curve going right low fifties, braced at 18 months of age, until 7 then again at 11 until fusion at 13. I'm now 18 (yep I'm probably someone you don't meet every day, a grown up Infantile Idiopthic Scoliosis baby), fused from T2-T11 after a holding fusion, with curves in high sixties and low fifties. ANd I lead a wonderful, fullfilling fun life, and if someone tries to tell me I can't do something I say watch me, and go ahead and do it to prove them wrong

    Alison
    Last edited by Alison; 07-22-2004 at 02:58 AM.

  7. #7
    Join Date
    Mar 2004
    Location
    Maine
    Posts
    28
    Alison,

    Thanks for responding. I have never met an 18 year old with infantile scoliosis, you are right about that. I am glad to hear that you are doing fine and continue to be active! Last night I read an article about idiopathic scoliosis and it did comment about infantile scoliosis being mostly left curves. I wonder why. Well thanks again for writing.

    Ann

  8. #8
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809

    Son Evan (12 months)

    My son was diagnosed in February 2000 with infantile scoliosis at the age of 15 months, initial curve 45+, wore a brace full time for a few years, then in March 2004 he had surgery (invertebral body stapling) at Shriners Hospital in Philadelphia. He's now seven years old, doing great. He's able to do anything any other child his age can do. Recently we were given the option of a nighttime brace (as extra protection against progression). We opted for it. And since he only wears it at night, he doesn't mind at all. He even asks me to put it on sometimes when getting ready for bed. His curve has been holding since surgery in the low 30's and, since it's been nearly 2 years since surgery, his doctor (Dr. D'Andrea) thinks he'll do fine, at least until the adolescent growth spurt. That's always the dangerous time in terms of progression - but she does not, by any means, feel that it's a given for him to progress at that time. None of us dealing with this know what the future holds.

    My point is infantile scoliosis is tough for a parent to deal with BUT there is hope - plenty of it. I'd be happy to answer any questions - and feel free to e-mail me privately as well if you prefer.

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