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Thread: New diagnosis

  1. #1
    Join Date
    Nov 2005
    Location
    Kansas City, MO
    Posts
    1

    New diagnosis

    My daughter, Hannah, 5 has just had an x-ray for scoliosis screening and we found out that she has a curvature of 17 degrees. I've been looking on the internet for more information and feel rather scared and overwhelmed. I spoke to the nurse at the pediatrician's office and she said that they are going to refer us to an othopedist at Children's Mercy Hospital.

    Please could someone tell me what we should expect and what are good questions to ask? As I said I'm feeling rather small and scared right now.

    Nessa

  2. #2
    Join Date
    Jul 2005
    Location
    NY State on border of northeastern PA
    Posts
    20

    welcome

    Just wanted to say welcome to you and to let you know that you are not alone. As you can see from my thread "new at this: 5 year-old son w/ scoliosis" I too was very overwhelmed and scared to pieces when my Alex was diagnosed during his pre-Kindergarten physical (confirmed with an x-ray ordered by his Pediatrician). Carmell (who is SO knowledgeable) gave me some EXCELLENT advice and suggestions in my thread that may be helpful to you as well; and there is also a link on my thread where you can search for a pediatric orthopedic specialist in your area.

    My son, Alex, has a 30 degree "s" curve diagnosed in July 2005 and we are still in the process of determining if he needs a brace now--waiting for his Dr. in Syracuse, NY to review his MRI results.

    I will tell you that Carmell's advice to me about writing down all of your questions was a good one. I have a list ready right now for when we hear from Dr. Albanese sometime next week (hopefully). Also, the fact that scoliosis is rarely life-threatening helped me to calm down.

    I would be happy to chat with you about my experience with Alex--send me a personal message if you'd like. I wish you the best of luck with your little girl--please keep us up-to-date and ask ANY questions you may think of. This is a GREAT support network to belong to in my opinion

  3. #3
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Nessa - Welcome

    Kim gave you some great suggestions. I have been away this weekend for Braydon's VEPTR expansion surgery. He had surgery on Thursday and is doing great.

    The first thing you need to do is take a few deep breaths and remember to take it all one step at a time. Scoliosis is rarely an emergency situation. You have time to research and find the right doc with the right "game plan" for your situation.

    Scoliosis in young children is not common. For this reason, its best to see a PEDIATRIC orthopedist who has extensive experience in treating children with similar conditions as Hannah. She will eventually probably need a renal ultrasound to make sure her kidneys are working well (the spine and kidneys develop around the same time in fetal growth) and a full-spine MRI to make sure there are no spinal cord anomalies.

    Like Kim said, write down your questions in priority order. Make sure you ask questions that are specific to Hannah. Give a FULL medical history (if any). Even things you don't think would be related, may be related to scoliosis and the cause or lack of cause.

    Also, you are not alone. Remember there are many here who have walked in similar shoes. Once you meet with a ped. ortho, you will have a better picture of the condition and the game plan for Hannah. Hannah's curve at 17 degrees is mild. The key will be to keep an eye on it and watch her during her growth years.

    Good luck and let us know if you have any other questions.

    P.S. - Thanks Kim for the nice comments!
    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/

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