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Thread: Newbie with a lot of questions about treatment options

  1. #1
    Join Date
    Oct 2006
    Southern Illinois

    Newbie with a lot of questions about treatment options

    Hello everyone!

    I posted this on the Infant section of these forums, but because my daughter is 4.5 (she'll be 5 in February) I thought I would post here too-- hope that's okay!

    My name is Sharee and I am new to these forums. I am an attorney-turned-SAH homeschooling mom of 4 wonderful girls. We adopted our newest addition, Masha, from Russia this past February. She has Escobar Syndrome, which, among other things, means that she has several (approximately 8) vertabrae in her spine that have been fused together since birth. This has caused her to have pretty severe scoliosis for her young age-- her spine is between 75 and 80 degrees of curvature at age 4.

    We have been seeing Dr. Lenke in St Louis since bringing Masha home. Dr. Lenke had planned to put Masha in halo traction starting next week, with surgery to follow 6 weeks later.

    We began having problems with the logistics, though, of living in St Louis for 6 weeks (we live 2 hours away) and visiting Masha daily (we homeschool and I have 3 other kids) because of Shriner's visitation policies. We were getting SO frustrated and finally had called Dr. Lenke's office to see if we could house Masha somewhere else while she was in traction.

    Meanwhile, though, last month, Dr. Lenke presented Masha's case at a scoliosis medical conference. The general medical consensus was that Masha needed traction for several months-- not several weeks.

    So, we have delayed Masha's halo surgery, and we are looking in to other options. One thing we are investigating is having her in halo traction at home. Has anyone out there done this? We are having a hard time locating the medical equipment we would need. If anyone has any insights, I would love to hear them.

    Also, we are looking into other options-- like serial casting. My parents live in Utah, and we will be visiting them for Thanksgiving, so I called Dr. D'Astous at Shriners in SLC to try and arrange a consult to look into serial casting-- I am waiting for a call back. If anyone has had a child undergo serial casting, and/or can tell me a little about Dr. D'Astous, I'd love to hear from you. Though Masha's back is rather stiff, she does have some correction if she is stretched out, especially if she is on her side opposite the curvature.

    I do not know what other options there are for us, but I'd love to hear everyone else's insights and experiences.

    Wife to Mike
    Mommy to 4 gorgeous girls, including Masha, with Escobar Syndrome, Arthrogryposis, and Scoliosis caused by a congenital fusion of several vertabrae.

  2. #2
    Join Date
    Oct 2003
    Hi Sharee,

    I posted to you on the board. I'll also email you privately. There is a LOT of hope for your Masha. I promise. You are in good company - not alone on this scoli journey.

    My best,
    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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