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Dr. Feldman/NYC/Congenital Scoliosis

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  • Dr. Feldman/NYC/Congenital Scoliosis

    Hi, everyone. I am new to this forum. My 9-month-old baby has been diagnosed with scoliosis. We are waiting to hear if it is congenital or not. Do any of you have any experience with Dr. Feldman at NYU? Or any other doc in New York City who you would recommend who deals with babies?

    Thanks in advance,

    Kelly

  • #2
    Hi Kelly,

    I have been corresponding with families who have infants/young children with scoliosis for 8+ years. There are not any specialists in NYC who specialize in JUST infants and young children with scoliosis. The parents I've heard from say Dr. Feldman is great for typical teenage scoliosis issues, but not for our very little ones. You may want to go to Shriners in Philly (Drs. Betz and D'Andrea), Boston (Dr. Emans and staff), Hershey PA (Dr. Segal), etc.

    You need to be seeing someone who has extensive experience in dealing with infants and scoliosis. Scoliosis will be something you will be dealing with for a very long time. It doesn't have to be a bad thing. If your PEDIATRIC orthopedist has a good communication system with you, that's half the battle.

    Scoliosis is not common in infants. Does your little one have any other medical issue that may influence the scoliosis? A ped. ortho. will be able to help you sort out the necessary testing that may need to be done (i.e., renal tests, cardiac tests, neurosurgery/muscular test). You'll want to make sure there is nothing else that would be an issue in treating the scoliosis.

    The very good news is that there have been amazing advances in treating infants and very young children with scoliosis (both congenital problems and idiopathic cases). Once you find out the details (i.e., idiopathic -vs- congenital, any other medical issues, etc.) then the treatment options can be layed out.

    I wish you the best. Feel free to email me if you'd like. I'll be happy to send you my phone number if you prefer telephone conversations. boulderfam@hotmail.com
    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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    • #3
      Hi Kelly - My son was diagnosed at 16 months (we, too, are in NY). After being treated/braced for a few years by a dr. affiliated w/HSS - he had surgery (invertebral body stapling) at Shriners in Philly (performed by Dr. D'Andrea) in March 2004 and is doing well. I agree that Shriners (particularly the hosp. in Philly) has lots of experience in treating very young patients. I see this all the time, as we still go there for follow-ups a couple of times a year. I'd love to stay in touch - as I have been in a similar situation. If you want to send me a private email my address is mariaf305@yahoo.com. I'll keep you in my thoughts and prayers. There have been many advances in treating scoliosis in the past few years (particularly more options for the very young). From what I have seen, Shriners (Philly) is at the forefront of this new technology.

      Best of luck,

      Maria
      mariaf305@yahoo.com
      Mom to David, age 17, braced June 2000 to March 2004
      Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

      https://www.facebook.com/groups/ScoliosisTethering/

      http://pediatricspinefoundation.org/

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