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Thread: new and need ideas

  1. #1
    Join Date
    Feb 2004
    Posts
    2

    Talking new and need ideas

    Hi-
    My son Brock is almost 4 yrs old. He was born in resp. distress with pneumonia and sepsis. After a mth in ICN he came home for 3weeks only to be flown to UofI hospitals where he remained for the next 10mths. He was diagnosed with a rare cervical abnormality. He was missing his C2 and C3 vertebrae. It is so rare that it has not been named yet. I discovered he had scoliosis at age 1 1/2mths. He also had bilateral clubfoot. He has had a tracheostomy placed, g-tube, and nissen. Due to the severity of his neck he was placed in a turtle shell to stabilize his neck which caused his jawline to recess which we will surgically correct for in the near future. He is currently 26lbs and 33 1/2 cm long. No cause has been determined to explain the problems he has. We have a specialist dr for every inch of his body and so far we have been very happy with them except for this dr. I am not impressed with our current scoliosis dr. and wonder who or where we should go for the best treatment. His dr. did prescribe a brace but stated we'd better try this before we do surgery. I dont think the brace helped at all. He is also very vague- I do not know the severity of his curve but I would say it is rather pronounced and severe. Any ideas for help would be greatly appreciated!!

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Brock's parent (assuming you are the mom)

    Welcome to the board. Brock sounds like he's had his share of medical drama and trauma already in his life. I would STRONGLY encourage you to find several more opinions about how to treat his scoliosis and other orthopedic issues. He needs to be seen by a PEDIATRIC orthopedist who specializes in spine malformations. Someone who has extensive experience in this field. There aren't many specialist out there, and his condition is fairly unique, but there are kids out there in similar shoes. I'm sure you will need to travel to find the best care, it's hard, but not impossible.

    I would also suggest calling or emailing several orthos and see if they can give you guidance via the telephone or email service. Some will, others will not.

    I also think you could benefit from another board I post on. Brock's medical condition sounds like he fits in with some of the kids on the VaterConnection list. He may not have a true VATERS/VACTERL Association diagnosis/classification, but that doesn't change the fact that his medical issues are treated similarly to those on the list. The messageboard is found here: http://www.vaterconnection.org/megabbs and the main board is here: http://www.vaterconnection.org

    My son is a VACTERL patient, but has a little different spine issues (nothing cervical). I'd be happy to share our experiences with you. Feel free to email me if you are more comfortable with that. boulderfam@hotmail.com

    My best to 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/

  3. #3
    Join Date
    Feb 2004
    Posts
    2
    Carmell
    Thanks so much for your reply! We really appreciate it. I will check
    into the websites and get back to you with any questions- Thanks again!!!!!!-andrea (Brocks mom).

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