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Thread: Need a dr. in PA/NJ/DE/NY Providence Brace

  1. #1
    Join Date
    Jul 2008
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    8

    Need a dr. in PA/NJ/DE/NY Providence Brace

    Can anyone recommend a good pediatric orthoped who prescribes the Providence Brace or at least thinks outside the box from 23 hours a day in a hard brace? I am looking to take both of my girls for a 2nd opinion. I am in Central PA and would love a recommendation. Thanks.

  2. #2
    Join Date
    Jan 2008
    Location
    Oregon
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    How about Shriners Philly

    Hi,

    Have you considered Shriners Philly or Erie? I know they will prescribe the Providence, at least in Philly, if it is appropriate for your child's curve. They are very keyed in to quality of life issues for kids in Philly, and if a child or family is distressed by the idea of 23 hr bracing, they will offer you other alternatives. All care is free there, and you don't need to have a Shrine sponser. Amazing to hear that a doc would be unwilling to let you try it a Providence in lieu of full-time bracing.

    We travelled to Shriners Philly from OR because it is a top scoliosis center. You could e-mail the scoliosis PA, Janet Cerrone, and just ask her her thoughts. She is extremely nice, and will usually get back to you within a few days. Her e-mail is janetcerrone@comcast.net

    Good luck
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  3. #3
    Join Date
    Jul 2008
    Posts
    8
    Thanks....we did go to Shriners for my younger daughter and it was basically VBS or 23 hr. boston....we felt very rushed and were basically pushed into the bracing office with no info - we walked out of the bracing office without going through with it..........we may give it another try in the future but didn't have the best first experience. I am more than willing to chalk that up to a busy day - I was not aware that they ever prescribe the providence though. My younger daughter is now in a Wilmington overnight (she has a long road ahead of her as she is only 8) but I'm seeking a 2nd opinion for my older daughter (12 and 1/2) whose curve has progressed and our dr. now wants put in a full time wilmington...we are worried about her emotionally and to be honest physically too with regards to full-time. We are really hoping to find a dr. who would consider the providence for her - our dr. only prescribes the wilmington....nothing else. I know the providence isn't as time-proven but to be honest, regarding the studies on all bracing, I'm not sure I can be confident that any brace is proven to be successful

    Thank you for your reply...I appreciate any and all input!

  4. #4
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    I'm not sure what bracing they prescribe, but have you checked the DuPont Hospital in Delaware?

    Mary Lou

    P.S. I sent you a private message (PM).
    Last edited by Snoopy; 08-02-2009 at 09:00 PM.
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  5. #5
    Join Date
    Aug 2004
    Location
    ny
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    Hi Mymollybt,

    I agree with Gayle that you might want to reconsider a trip to Shriners in Philadelphia. I'm truly sorry to hear of your experience and it does seem to be very unlike the typical experiences I have heard about - perhaps, as you say, it was an unusually busy day.

    I did want to also mention that VBS is one way the doctors there do think "outside the box" and really try to offer other alternatives to full time bracing.

    Perhaps they did not feel that your daughter's curve would respond well to the Providence? I don't know - but I do know that the Providence is not suitable for every type and size of curve, so I'm just speculating. But they definitely do prescribe the Providence (as well as the Charleston) night time brace at Shriners in Philadelphia.

    You really have nothing to lose by giving them another try - IF you feel comfortable doing so, of course.

    Best of luck to you whatever you decide and please keep us posted
    Last edited by mariaf; 08-02-2009 at 07:36 PM.
    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/

  6. #6
    Join Date
    Jan 2008
    Location
    Oregon
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    Hi Mymollybt,

    I agree with Maria, that really doesn't sound like our experience in Philly at all. In fact we met with the PA (Janet Cerrone) then Dr Betz for a total of over 90 minutes. I am sorry to hear your appt was rushed--was it in Philly?-or another Shriners? They really are different in Philly than other Shriners in my experience (we have also been seen at Shriners Portland).

    My experience with Philly is if you let them know you have concerns about your child's psychological adjustment to bracing, they will find an alternative for your child. My young daughter was prescribed 16 hrs/day of bracing, and Dr Betz told her she did not have to wear it to school. I believe this is his recommendation when at all possible. And of course if you are interested, VBS can be an alternative to bracing in some children. Have you tried contacting them and letting them know your explicit concerns, and specifically requesting if the Providence or Charleston would be a possible option for your daughter? They understand that a daunting schedule of 23 hours, if distressing to the child, will not be complied with. In that case, they should work with you to find another alternative.

    Good luck! I can not imagine having to cope with having two braced children. Please let us know how things are going.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  7. #7
    Join Date
    May 2009
    Posts
    84
    I sent you a Message!

  8. #8
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,158
    Hi,

    You might also have luck getting the names of some pediatric orthopedists who prescribe the Providence Brace by contacting the brace manufacturer, Spinal Technology Inc. Here's a link: http://www.spinaltech.com/

    They have contact info on their site.

    Good luck,
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  9. #9
    Join Date
    Jul 2008
    Posts
    8
    Thank you all so very much for your quick replies. And especially thank you for asking me how I am doing with regards to having two kids going through this......it certainly is tough and it just seems like right now we are dealing with one thing after the next so I am holding onto the hope that things have got to get better We honestly thought that my older daughter was going to somehow get through this without any treatment and were just coming to terms with my youngest needing treatment and then the latest xray just blew us away.

    So, I took a shot at emailing Janet today with my specific concerns...I also gave her an update on my younger daughter who had been seen there last year. I received a reply within a couple of hours (on a Sunday!)....and she feels that the dr's there are very willing to consider the emotional aspects of fulltime bracing while developing a treatment plan. She even said she will get my oldest in ASAP....I can't believe how kind she is, but I do remember that after Brooke's appt. last year I emailed her a few times back and forth for info on VBS and she was always kind and helpful.....So, we will definitely be heading down there again, but this time with my older daughter, to see what they may recommend.....like I said, the day we were there with my younger daughter they were jam packed and that could have very well been the problem...not to mention how overwhelmed we were....and still are

    If anyone else has any thoughts/suggestions/recommendations I would still love to hear them

    So, thank you all so much...I will keep you updated.

  10. #10
    Join Date
    Aug 2004
    Location
    ny
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    1,805
    Now THAT is much more typical of the treatment in Philly

    I'm SO happy for you and you sound VERY relieved. Feel free to ask Janet and the doctors anything when you go for your appt. (probably a good idea to write down a list of questions). My son has been a patient there since 2003 and everyone has been wonderful.

    I know this is all very overwhelming now - but hopefully once a plan is in place that you feel comfortable with, you will feel a lot better.

    Please keep us posted.
    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/

  11. #11
    Join Date
    Jul 2008
    Posts
    8
    I wanted to thank you all so very much for suggesting we go back to Shriners. I honestly couldn't of asked for a better appointment. Janet spent so much time with us and our daughters that I'm afraid we screwed up her appt. schedule for the rest of the day! She is so knowledgable and SO very much more thorough than the dr. we've been seeing. Thanks again!

  12. #12
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Quote Originally Posted by mymollybt View Post
    Janet spent so much time with us and our daughters that I'm afraid we screwed up her appt. schedule for the rest of the day!
    Knowing Janet, I'm sure she didn't mind one bit!!

    I'm so glad things turned out so well.

    Best of luck to you and please keep us posted!
    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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