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Thread: My son Lucas (22 mo)

  1. #1
    Join Date
    Sep 2003
    north of boston, ma

    My son Lucas (22 mo)

    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(?).

    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!

  2. #2
    Join Date
    Oct 2003
    Hi Deshea,

    I can relate to some of the things you posted about! My son, Braydon, is now 8yrs old. He was born with congenital scoliosis (that's the part that's different from Lucas). Braydon also had a fatty filum/tethered spinal cord which we found out about at age 3-1/2. His release surgery went very smooth, just like you said Lucas's did. Our neurosurgeon strongly believes there is a connection between tethered spinal cords and spinal curves, especially in idiopathic scoliosis cases. For Braydon, having the tethered cord release procedure helped stop the progression of his curve, and helped stablize his spine somewhat.

    As Lucas gets older, watch for things like chronic constipation and any changes in his bladder or bowel habits. Those are just a few things to keep an eye out for in case the cord re-tethers. The chances of re-tethering of fatty filum is very rare, but it does happen and I don't want any parent to not know what to watch for.

    I also hope that this has helped Lucas's spine so he avoids fusion. Fusion in young children should be avoided if at all possible. There are a select few circumstances where fusion is still the best option, but for most cases, fusion is NOT a good idea for infants and children.

    I hope his recovery continues to go smooth! Keep us posted.
    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.

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