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Thread: spinecor

  1. #1546
    Join Date
    Mar 2004
    Posts
    1,140
    Linda,

    Remember the P.M. I sent you a few weeks back regarding the crotch straps? It shouldn't be so difficult. From my own personal experience, it took us one day to adjust. We also don't remove the entire brace everytime she has to go to the bathroom or has a bowel movement.


    *

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  2. #1547
    Join Date
    Mar 2007
    Posts
    9
    (Celia - Yes, I have the PM's, but we get the crotch straps wet if she leaves them on. They are very tight fitting and close to her body, so you can't move them to the side. We also can't get to the bodysuit if we don't undo them. Is ours fitted tighter than yours?)

    Also, all the snaps are exceptionally tight. I had my husband try last night, to see if I was just being a weakling but he struggled too. Dr. Pappas did say they changed from being copper snaps to steel, because they were unsnapping too easily. At this point there is no way she can do them herself. I keep hoping they'll loosen up over time.

    She had her first softball practice last night, and she came home very sore from the brace cutting in new places. So again we had to take it off for a few hours to let her skin heal. She's very active but very tiny, with little meat on her to cover bones. All the motion made the brace rub her in new places.

    I'm sure it's just going to take time to adjust. She's sleeping in it well, except the shoulder strap #4 wants to keep sliding off. I think they need to make the straps narrower for the smaller sizes. The shoulder straps are almost wider than her shoulder.

    We really want this to work ; we're going against all recommendations of the "tried and true" and paying pretty much all of it out of pocket, to give her a chance against going with the TLSO, and eventually surgery.

    Hopefully this is just a learning curve! Have a great day everyone, and thanks for all your help! You make all the difference.

    Linda

  3. #1548
    Join Date
    Mar 2004
    Posts
    1,140
    Linda,

    I'm so sorry to here this! Dr. Coillard was telling me the last time I was in Montreal that the new pelvic base is much larger than the old style. Deirdre has the old style. When we got the new brace we were able to keep the old pelvic base.

    *

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  4. #1549
    Join Date
    Aug 2006
    Posts
    369
    Linda

    are the crotch straps crisscrossed????

    Frankly I would suggest seeing Dr. Rivard and Coillard just once to make sure the brace is fit properly. Or come out and ask them if they feel comfortable with your doctors training in the use of the brace. Dr. Rivard is excellent about returning calls and e mails. My daughter is 6 and VERY thin and VERY active she plays ice hockey and does gymnastics and has very little skin issues. She adjusted to the brace is just 2 days. Feel free to PM me.

    What was your daughters initial correction in brace?

    Christine
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  5. #1550
    Join Date
    Aug 2006
    Posts
    369
    I forgot to add. I put a little soap on the snaps to make them easier to unsnap.
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  6. #1551
    Join Date
    Sep 2005
    Posts
    877
    Remember, crotch straps are to be undone when going to the bathroom. Only the thigh bands can't be undone or it will disturb the entire brace.
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

  7. #1552
    Join Date
    Aug 2006
    Posts
    369
    Melissa

    Good point
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  8. #1553
    Join Date
    Sep 2006
    Posts
    33
    Hi Linda:

    I really feel for you. We had a lot of similar issues dealing with the bathroom at first, but within a few weeks, we got into a routine. My daughter is six, and we've been managing the school day by having her go to the nurse's office. She's able to help her with snapping the snaps. She has been starting to try snapping herself back up, but it's still too hard for her. I think she'll be able to get the hang of it in the next few months. We've experimented with a lot of different kinds of underwear solutions. Champion makes a good biker-short style athletic bottom. We cut a slit in them so that her thighs are protected, and she can wear them under her body suit.

    Hang in there! In a little while this will all become the "new normal."
    Caroline
    From Massachusetts, USA
    7-yr.-old daughter in Spinecor 9/06-10/07
    Vertebral stapling surgery done 10/07 at Shriners in Philadelphia

  9. #1554
    Join Date
    Mar 2004
    Posts
    1,140
    When Deirdre is at home, I help her undo the crotch straps and of course leave the thigh bands on when she goes to the bathroom. When she's at school and has to go to the bathroom (her school doesn't have a nurse) she leaves the crotch straps on and moves both as far to the side and doesn't get them wet. Honestly, I really don't know how else we would manage this because she wouldn't be able to get the crotch straps off/on by herself. Her little fingers are too small and weak to manage it. My daughter would be mortified having a teacher/principal help her go to the bathroom - she is very independent and would feel humiliated in front of her peers.

    Having the old style pelvic base makes a lot of this simpler for her since the pelvic base doesn't take up a lot of room. Dr Coillard advised us against getting the new style pelvic base saying that it wouldn't fit Deirdre. So I don't know why Spinecorporation has been revising the design of the brace thereby making it more difficult for small children to wear it.


    *
    Last edited by Celia; 04-05-2007 at 07:29 AM.

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  10. #1555
    Join Date
    Dec 2004
    Posts
    236
    Quote Originally Posted by christine2
    Alabama mom
    Are you driving? Birth certificates are accepted at the US/Canada border until 2008 then passports are needed.
    I read they changed the law and now the kids won't need passports driving into Canada next year. Does anyone know how old? At what age DO they need the passport? Thanks p

  11. #1556
    Join Date
    Aug 2006
    Posts
    369
    Pat
    That is interesting. Does anyone know?
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  12. #1557
    Join Date
    Sep 2005
    Posts
    877
    Pat,

    I thought that the kids needed the passports next year for driving thru. We just went to the courthouse to get one for Nicole. Now they have her birth certificate and we won't get either back for 13 weeks. So now I have to go and get her another original birth certificate before our next appt.

    They just called me from Montreal and gave me some choices in May. We are leaning towards going the last two days of May.
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

  13. #1558
    Join Date
    Aug 2006
    Posts
    369
    It appears that as a proposal is being made to allow flexability for children under 15yrs. If the proposal is passed children under 15 will be able to cross by land with a birth certificate.There is still no ruling
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  14. #1559
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    here's the official notice from homeland security:

    DHS Announces Proposed Passport Flexibility for U.S. and Canadian Children at Land and Sea Borders

    Release Date: February 22, 2007

    For Immediate Release
    Office of the Press Secretary
    Contact: (202) 282-8010

    The Department of Homeland Security (DHS) announced today its intent to propose, as part of the forthcoming Notice of Proposed Rulemaking on the Western Hemisphere Travel Initiative (WHTI), significant flexibility regarding travel documents required for U.S. and Canadian children as part of WHTI requirements for U.S. land and sea border entry in 2008.

    As early as January 1, 2008, U.S. citizens traveling between the United States and Canada, Mexico, Central and South America, the Caribbean, and Bermuda by land or sea will be required to present a valid passport or other WHTI compliant documents, as determined by the Department of Homeland Security.

    This proposal, which will be subject to public comment as part of the rulemaking process on the WHTI, would allow U.S. and Canadian citizens, ages 15 and younger with parental consent, to cross the border at land and sea ports with a certified copy of their birth certificate as an alternative to a passport or other WHTI compliant identity card. U.S. and Canadian citizen children, ages 16 through 18, traveling with public or private school groups, religious groups, social or cultural organizations or teams associated with youth athletics organizations would also be able to enter, under adult supervision, with a certified copy of their birth certificate.

    The initial phase of WHTI travel document requirements went into effect last month, obligating all air travelers, regardless of age, to present a passport for entry to the United States. The DHS proposal announced today does not affect the requirements for air travel.

    The Department of State will soon issue final regulations that will allow it to issue to U.S. citizens a lower cost alternative to a passport, the Passport Card. DHS will continue to issue WHTI compliant border crossing documents for frequent border crossers under its trusted traveler programs.

    The Intelligence Reform and Terrorism Prevention Act of 2004 mandated the WHTI travel document requirements. A formal proposed rule addressing land and sea travel will be published at a later date, with additional details on requirements for travelers entering the United States through land and sea border crossings.
    mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
    spinal detethering due to a tight/fatty filum at 22 mos;
    tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
    serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
    now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
    and ruby (3 1/2 yrs old and a handful!)
    north of boston, ma

  15. #1560
    Join Date
    Sep 2005
    Posts
    877
    Why did my husband and I just take Nicole to get a passport? Now we don't have her birth certificate. I just created more trouble for myself. Oh well, I suppose it is good to have a passport anyway.
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

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