Results 1 to 7 of 7

Thread: Need help finding a doctor

  1. #1
    Join Date
    Jan 2005
    Location
    San Jose, California
    Posts
    6

    Need help finding a doctor

    My 7 year old niece was diagnosed with juvenile soliosis 6 months ago. Her doctor monitored it for the first 6 months and now recommends a Boston brace and has cautioned that she'll likely need surgery in 2 years or so, with addtional surveries likely as she grows. My sister (the mom) is terrified, as even though the doctor is at Stanford Medical, an excellent facility, he has no experience with a child this age. They have taken her to the other renowned medical center in the Bay Area, UCSF, and the doctors there also have never seen a child this young with the condition. My sister and our family are desperate to find a doctor that has worked with kids this age, and will travel to anywhere in the country to see him or her. Can anyone offer us a referral or advise.

    Thank you so much,

    Leigh Goldstein

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Leigh - Welcome.

    You are a good aunt to help research and find the best care for your niece.

    Having been told by two fairly reputable institutions that her condition is the first they've seen, means your sister needs to go somewhere else. It is a relatively uncommon condition to have scoliosis as a 7yr old, but not unheardof. You didn't mention if she has other medical issues that would complicate a scoliosis diagnosis, so I'm assuming she's an otherwise healthy child.

    There is a handful of pediatric orthopedists who I would trust my child's life to... The list includes:

    Dr. John Smith at PCMC in Salt Lake City (Braydon's current ortho)
    Dr. John Emans at Boston Children's Hospital
    Dr. Kit Song at Seattle Children's Hospital
    Dr. Randal Betz at Shriners in Philly
    Dr. Fran Farley at U of Michigan Ann Arbor

    There are probably others, but that's a good list to start with. You can find contact information for these people on the internet.

    Scoliosis is not typically an emergency situation, so you have time to research and find the right doctor, recommending the right procedure, at the right time for her.

    Good luck and keep us posted.
    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
    Jul 2004
    Location
    Northern California
    Posts
    255
    I think Linda Racine is particularly familiar with the West Coast, let's hope she sees this email, I'm sure she could recommend somebody in SF.

  4. #4
    Join Date
    Jul 2004
    Location
    Northern California
    Posts
    255
    ps I'm in the Philly area and also hear great things about Shriners here.
    pps Carmell, you are a wonderful resource!

  5. #5
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Thanks for your nice comments. My collective list of pediatric orthos is based on input from other parents who are dealing with scoliosis in infants/young children. Nothing scientific. However, IMHO, experience speaks volumes. I've heard more than once that someone who is supposed to be excellent (on paper) is not necessarily the right doc for you and your child. This is another good argument for getting AT LEAST 2 opinions before making any decision about treatment.

    I hope to continue to share parts of our experiences to help other parents find the best care possible for their child(ren). I find it always helps to hear from other parents who have similar experiences. And, we all know that if possible, we would trade places with our children in a heartbeat. But we can't. We can be the best advocate possible for our child(ren). All parents on boards and lists like this care enough about their children that they want to give them the best care possible. By sharing our own experiences, that makes this process just a little more do-able.
    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
    Jan 2005
    Location
    San Jose, California
    Posts
    6

    Thank you!

    Carmell and Irmb,

    Thank you so much for your help. I have forwarded the doctors' names that Carmell gave to my Mom, who is making all the initial calls while my sister takes Julianna to the local doctors for now. It's very frenetic as the family comes to grips with this reality, but I am proud of the way that we are banding together towards the common goal of helping Julianna. Irmb, who is Linda Racine, and is there a way I could get hold of her other than hoping that she sees these emails?

    I'll keep you all posted. Thank you again!

    Leigh

  7. #7
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi Leigh...

    I think I talked to your mother or MIL this morning??

    If that's the case, I understand that your niece has seen Dr. Rinsky and Dr. Diab, which are the two doctors I'd recommend. I'm surprised that both doctors said they'd never worked with kids as young as your niece, as I know that they have. I'm wondering if there's some additional information that would make that statement make sense.

    Anyway, your niece is in excellent hands, and I would definitely trust what they're saying. I'd put my own child in either doctor's hands.

    Regards,
    Linda

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •