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Thread: more info on Khyler

  1. #1
    Join Date
    Mar 2006
    Posts
    29

    more info on Khyler

    hi everyone
    long time since i was on here last been very busy with Khyler's appts. and my little girl just turned one and she is in everything well we got the news that Khyler is not a canidate for vepter after all they are less worried about his lungs and more worried about his curvature and the kyphosis so what they want to do is to cut the tendons around his spine that are holding things the way they are and making his curve more rigid and then insert growing rods. this confuses me because everthing that i have read on line seems to tel me that they wil fuse his spine to this and that will make his chest wall smaller in the long run but the doctor is telling me that they are not fusing him and that while having scoliosis and peire robaine synd. will make him a little shorter anyway that in the long run this isn't going to affect his height or chest size that severley? so anyways he is scheduled to have surg. at cincinnati childrens on Febuary 5th and i am scared to death.
    we were there for sleep study and for Khy to get a c-pap machiene just before thanksgiving and Khy did really well we stayed there for like three days and he just thought it was great fun.......
    corina

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

    it's so good to see a post from you and an update on khyler. i have definitely wondered about you guys! looks like you have your hands full with your 2 i'm not entirely sure why khyler is not a candidate for veptr. i'm very leery of growing rods. if you were going to an ortho that doesn't do veptr than i would question the growing rods, but you are going to dr. crawford, right? you guys have a lot on your plate right now. how is khyler? when did you find out about pierre robin? what does this mean exactly?

    my heart goes out to you and your family. i hope things start to move forward in a positive direction in the new year.

    all my best,
    deshea
    mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
    spinal detethering due to a tight/fatty filum at 22 mos;
    tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
    serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
    now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
    and ruby (3 1/2 yrs old and a handful!)
    north of boston, ma

  3. #3
    Join Date
    Mar 2006
    Posts
    29
    deshea
    we are seeing Dr. do but she has discused the case with dr. crawford and they both agree that the vepter wouldn't really help the problem there saying that the major issue is the khyposis and scoliosis and that the vepter is mainly for fused ribs andchest wall growth which khyler does need but the khyposis is not at all corrected by vepter and that is a big concern. We have known about the pere robaine since he was born it basicaly means he has a recessed chin and some other growth issues usually kids with this tend to be shorter there are other issues but he has a very mild case. Thank you for your concern and thoughts it's greatly apperciated. hope everything is well with your family
    Corina

  4. #4
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    corina,

    ah, i do think that i recall other parents discussing that it is difficult for veptr to address kyphosis. thanks for your explanation!

    i wish you all luck with khyler's surgery. i know that you will be in good hands with the group in cincinnati.

    my best,
    deshea
    mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
    spinal detethering due to a tight/fatty filum at 22 mos;
    tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
    serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
    now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
    and ruby (3 1/2 yrs old and a handful!)
    north of boston, ma

  5. #5
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Corina,

    I'm sending my best wishes and thoughts to you this month. It's hard to wait. I hope everything goes great on Feb. 5 and that he recovers well. We'll be anxious to hear how things go. Thinking of you.
    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/

  6. #6
    Join Date
    Mar 2006
    Posts
    29
    thank you carmell waiting is horrible but im keeping positive.

  7. #7
    Join Date
    Aug 2005
    Location
    S. Jersey
    Posts
    16
    Quote Originally Posted by sugs2780
    deshea
    we are seeing Dr. do but she has discused the case with dr. crawford and they both agree that the vepter wouldn't really help the problem there saying that the major issue is the khyposis and scoliosis and that the vepter is mainly for fused ribs andchest wall growth which khyler does need but the khyposis is not at all corrected by vepter and that is a big concern.
    Corina, while kyphosis might not be the primary target of most veptr operations, if done correctly by an experienced ortho, it CAN be used to treat some cases of kyphosis. A friend of mine's son had neuromuscular kyphosis as his primary complaing along with scoliosis, and Dr. Emans in Boston accepted him in the VEPTR program and has controlled his kyphosis well enough to get him off much of the oxygen he needed and kept him off a ventilator. Emans was the second doctor to do the VEPTRs, and has a LOT of scoli experience. While it isn't a perfect cure for kyphosis, it can be an option in some cases. I don't know if location of the problem affects that decision, or just the surgeon's comfort level with the idea of it, or maybe a bit of both. I do know a couple kids needed halo traction to reduce the kyphosis to a lesser degree prior to the VEPTR implants. I read of one on the net that said they had to do the traction to reduce the kyphosis from 120 degrees to 70some, then got VEPTRS...

    Also, many young children have the VEPTR placed JUST for scoli even without rib/chestwall deformities nowadays, as it's use is becoming more widespread, so it can address the scoliosis issue without growth compromise. You might want to check out the VEPTR.com site to see some of the kids, their pics and stories and maybe get some more info... Each doc seems to do the VEPTR a different way, adding their own preferences and expertise to its application. My son Billy was considered for this at the Philly Shriners, and he had lumbosacral scoliosis. They wanted to put a pelvis to rib hybrid rod in on both sides. We ended up going with fusion instead, as it was a better option for him neurologically, but he had NO chestwall issues.

    It may end up that it ISN'T the best choice for YOUR son, but it can help some kids with kyphosis...

    Good luck whatever you decide
    Connie - Mom to Billy 5
    (CRS/VACTERLS incl. tethered cord, IA, single kidney, hemisacrum, levoscoliosis with hemivertebrae (fusion T11 to S2/hips 8/06), extra left rib, hypospadius, hypoplastic left leg w/clubfoot and 4.5cm length discrepancy,GI issues) conni60640@aol.com, http://members.tripod.com/conni60640-ivil/
    TC support group http://health.groups.yahoo.com/group/LMC-TCS/
    Congenital scoliosis support group - http://health.groups.yahoo.com/group...liosisSupport/

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