i've posted on some other group sites, but decided to start this one out since no one has posted. i look forward to hearing from other people and their experience with the treatment of their young children with scolioisis:
my son lucas (22 mo) was diagnosed with scoliosis at his 18 mo appt (end of may). i'll jump ahead -- an mri in july revealed a fatty
filum or tight filum although not completely obvious whether or not he has a tethered spinal cord. this is one of many things that they are looking for when they want your child to get an mri after finding out that they have "infantile or idiopathic scoliosis". well, although
his spinal cord ends at the proper location, this fat located below the end of the spinal cord on this vestigial or remnant of the spinal
cord (but has no known neurological function) can cause pulling or tethering of the cord. hence, a possible cause for scoliosis. the
docs (both ortho and neuro) left it up to my husband and i whether or not we wanted to get the surgery done. yes, it is spinal surgery, but 1. it is the least invasive surgery that you can have for tethered spinal cord. laproscopic actually and no bone cut and 2. if we were
going to go through with bracing what is the point if we haven't gotten rid of the potential cause. so lucas had his surgery on sept.
17. after the surgery, the neuro said that it seemed like the cord was under "more tension than he normally sees when doing this type of
surgery on other kids". yippee! my husband and i took this as yes, he had a tethered spinal cord and the scoliosis is result of his body
trying to reduce the pulling on the cord. before this, the neuro had been saying that he can't always tell after he cuts the filum whether
or not it was under tension, but his time he definitely could. anyway, lucas was in the hospital for 3 days. the first two days he
didn't move much and was on morphine the first night and then tylenol with codeine the next couple of days. on the third day, he rolled
over, sat up, and held out his arms for me to pick him up. what a relief! and i haven't been able to keep up with him since. he's already back to his active self and we're really only giving him the tylenol with codeine 1 or 2x per day. he could have it every 4 hours if need be. of course, he's not wearing his brace right now. i'm not sure when we'll start up again with it. maybe after his follow up appt. with the neuro in 3 weeks. in addition to the surgery, when we was under anesthesia (sp?), they fitted him for another brace. a third opinion that we sought suggested using his current brace during the day (and not at night and naps like we are currently doing -- yes, not full-time), and getting a bending or charleston like brace for night. that way he is braced 24 hrs a day, but in two different braces so that he won't have chest wall deformities from just wearing
his current modified tlso brace. we mentioned serial plaster casting to all the docs that we saw and our current ortho and the shriners
ortho in springfield, ma really didn't give us good reasons not to except skin issues. the third ortho said that two different braces
can do a much better job than a cast (well, we're willing to try it out for awhile). our ortho at children's in boston that we've been
going to wasn't too keen on this idea (mostly that we got a second and third opinion, i think), but he let the orthotist do his job.
anyway, it's getting kind of late here and i wanted to update you on lucas. i'm really hoping that this surgery has gotten rid of the
cause and possibly we can correct the scoliosis as a result. of course, this is my hope, but i am also resigned to bracing/casting for
years to come as well. just as long as we can put off any ortho fusion surgery or at least until much, much later i will be happy happy.
i would love to hear other children's stories, and the decision making process that everyone has gone through to decide the course of
treatment for your child's scoliosis. i think that that would be really helpful to me and to others(?).
deshea
north of boston, ma
mom to lucas 22 mo otherwise happy and healthy child with scoliosis (68o and 34o although 18o and 0o with a stretching x-ray = very flexible, and 32o and 16o in the brace >50% correction) next appt in nov, x-ray without the brace to see (fingers crossed) correction!
http://homepage.mac.com/desheaharris/
my son lucas (22 mo) was diagnosed with scoliosis at his 18 mo appt (end of may). i'll jump ahead -- an mri in july revealed a fatty
filum or tight filum although not completely obvious whether or not he has a tethered spinal cord. this is one of many things that they are looking for when they want your child to get an mri after finding out that they have "infantile or idiopathic scoliosis". well, although
his spinal cord ends at the proper location, this fat located below the end of the spinal cord on this vestigial or remnant of the spinal
cord (but has no known neurological function) can cause pulling or tethering of the cord. hence, a possible cause for scoliosis. the
docs (both ortho and neuro) left it up to my husband and i whether or not we wanted to get the surgery done. yes, it is spinal surgery, but 1. it is the least invasive surgery that you can have for tethered spinal cord. laproscopic actually and no bone cut and 2. if we were
going to go through with bracing what is the point if we haven't gotten rid of the potential cause. so lucas had his surgery on sept.
17. after the surgery, the neuro said that it seemed like the cord was under "more tension than he normally sees when doing this type of
surgery on other kids". yippee! my husband and i took this as yes, he had a tethered spinal cord and the scoliosis is result of his body
trying to reduce the pulling on the cord. before this, the neuro had been saying that he can't always tell after he cuts the filum whether
or not it was under tension, but his time he definitely could. anyway, lucas was in the hospital for 3 days. the first two days he
didn't move much and was on morphine the first night and then tylenol with codeine the next couple of days. on the third day, he rolled
over, sat up, and held out his arms for me to pick him up. what a relief! and i haven't been able to keep up with him since. he's already back to his active self and we're really only giving him the tylenol with codeine 1 or 2x per day. he could have it every 4 hours if need be. of course, he's not wearing his brace right now. i'm not sure when we'll start up again with it. maybe after his follow up appt. with the neuro in 3 weeks. in addition to the surgery, when we was under anesthesia (sp?), they fitted him for another brace. a third opinion that we sought suggested using his current brace during the day (and not at night and naps like we are currently doing -- yes, not full-time), and getting a bending or charleston like brace for night. that way he is braced 24 hrs a day, but in two different braces so that he won't have chest wall deformities from just wearing
his current modified tlso brace. we mentioned serial plaster casting to all the docs that we saw and our current ortho and the shriners
ortho in springfield, ma really didn't give us good reasons not to except skin issues. the third ortho said that two different braces
can do a much better job than a cast (well, we're willing to try it out for awhile). our ortho at children's in boston that we've been
going to wasn't too keen on this idea (mostly that we got a second and third opinion, i think), but he let the orthotist do his job.
anyway, it's getting kind of late here and i wanted to update you on lucas. i'm really hoping that this surgery has gotten rid of the
cause and possibly we can correct the scoliosis as a result. of course, this is my hope, but i am also resigned to bracing/casting for
years to come as well. just as long as we can put off any ortho fusion surgery or at least until much, much later i will be happy happy.
i would love to hear other children's stories, and the decision making process that everyone has gone through to decide the course of
treatment for your child's scoliosis. i think that that would be really helpful to me and to others(?).
deshea
north of boston, ma
mom to lucas 22 mo otherwise happy and healthy child with scoliosis (68o and 34o although 18o and 0o with a stretching x-ray = very flexible, and 32o and 16o in the brace >50% correction) next appt in nov, x-ray without the brace to see (fingers crossed) correction!
http://homepage.mac.com/desheaharris/
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