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Thread: spinecor

  1. #2581
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Quote Originally Posted by LATigner
    I know this is the Spinecor thread but that a lot of parents read it who know about stapling. My daughter is 17 1/2 and pretty much done growing - are they using it on kids this old or do they have to have a lot of growing left? She has a double curve, about 44, 44. thanks
    Unfortunately, they need to have considerable growth left to do.

    There was some talk a few pages back on this thread about some promising new techniques being developed to treat larger curves - not sure how far down the road they are though.

    Good luck.
    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/

  2. #2582
    Join Date
    Aug 2007
    Posts
    388
    Melissa, I'm glad her passion is tap because it would seem to me that would be the easiest to do if flexibility is limited somewhat (other than irish step dancing maybe?) - and it would seem that if this one woman could dance professionally, than hopefully children who have fusion surgery could easily do it for fun and yet still be competitive if they want (again, I guess may not be the case with ballet, but tap is a little more upright). i'll have to get more details on this woman such as how long and where her fusion was.... i'll post it when I do. Funny about what you say about realizing you may have said the wrong thing to others in the past...I have been thinking that this whole situation has made me more aware and hopefully I will be a better friend to others who go through difficult situations in their lives. (because I'm sure I have fallen short in my response to others with troubles in the past!). And of course it is difficult to give the right response because different people want different responses.

    Milesmom, that is tough - it almost seems like because he is young they feel they can talk about it in front of him - that would bring out the protective mama bear response in me.

    Ruth, that is wonderful that your husband has been so involved (and we all benefit indirectly when you post some of the ideas he has uncovered!)
    daughter, 12, diagnosed 8/07 with 19T/13L
    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

  3. #2583
    Join Date
    Sep 2005
    Posts
    877
    Milesmom,

    I agree that it is so rude for strangers to ask you personal questions. Most of you know that I am a special education teacher part time. Right now I am only working with two children. One little boy has downs syndrome and it's a small world because his Mom and I were sorority sisters in college!!! Anyway, sweetest little almost-3 year old. Smart and adorable. Mom told me that strangers actually come up to her in the supermarket and say things like, "Oh, you poor thing." or "I give you so much credit. You must be such a strong person." or "Did you know you were having a child like that?" or the best one being someone she knows quickly walking down another aisle to avoid them completely. She just wants people to see her son as a little boy not as a disability.

    Ruth, your family lives in England. Is that where you are from?

    LaTigner, is your daughter finished wearing her Spinecor?


    I just realized that I have been posting with some of you for two years now!!!! I can't believe it. Where has the time gone? If I didn't look back and see my original post in 2005 I wouldn't believe it.
    Last edited by MATJESNIC; 12-03-2007 at 10:39 PM.
    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

  4. #2584
    Join Date
    May 2005
    Posts
    776
    UMMM... Gerbo

    speech button on the right??? What?? All that happens is I highlight with the left button then hit the right button and it says" cut, delete. paste....." So now what do I do to highlight a quote??
    what i meaned with the right button, was not the right one on the mouse.

    Look at the symbols just above this box (I mean the box you are in when you are replying), starting with a B, I and U, on the right of this row is what I call a button which looks like a speechbubble, press that and the highlighted text will be in a lightblue box

    is that clearer?

  5. #2585
    Join Date
    May 2005
    Posts
    776
    On scoliosis he has read everything he can find on the internet and at the library. He has dug deep into the subject reading lots and lots of medical articles. He has called experts in Canada and the U.S.

    . He has spent countless weekends with the laptop on his knee googling around looking for answers. He has spent a lot of time looking for a cause for the scoliosis - thinking if he can find a cause he can find a cure.
    sounds like me

    My daughter tells me that if I feel stressed I shouldn't - she tells me she is the one with the scoliosis and if I think I am stressed what do I think she is feeling.
    and that sounds like my daughter.

    also, she has made it very clear to us that the greatest source of her stress is our stress, cannot bear to see us upset. There is a clear message in that; however well intentioned and understandable our stress and concern; we can make it worse for our children!

  6. #2586
    Join Date
    Oct 2007
    Posts
    99
    what i meaned with the right button, was not the right one on the mouse.

    Look at the symbols just above this box (I mean the box you are in when you are replying), starting with a B, I and U, on the right of this row is what I call a button which looks like a speechbubble, press that and the highlighted text will be in a lightblue box

    is that clearer?
    did it work??

    Stephanie
    Mom to Michela ~age 12 ~VBS @ age 9 - 12/19/07 26* to 1*
    10/8/08 ~ curve is immeasurable!!
    07/16/09 ~ a few degrees overcorrected... being monitored
    12/28/09 ~ 14* overcorrected to the right
    2/23/10 ~ 12* overcorrected
    3/12/10 ~ Boston Brace at night to prevent further overcorrection. In brace corrects to -8*

  7. #2587
    Join Date
    Oct 2007
    Posts
    99
    Gerbo,

    Thank you. I have microsoft vista and had to give the computer "permission" to highlight or "run program". I am not a big fan of "Vista"!!

    Thank you much!!

    Stephanie
    Mom to Michela ~age 12 ~VBS @ age 9 - 12/19/07 26* to 1*
    10/8/08 ~ curve is immeasurable!!
    07/16/09 ~ a few degrees overcorrected... being monitored
    12/28/09 ~ 14* overcorrected to the right
    2/23/10 ~ 12* overcorrected
    3/12/10 ~ Boston Brace at night to prevent further overcorrection. In brace corrects to -8*

  8. #2588
    Join Date
    Sep 2007
    Posts
    338
    While I seem to be spearheading the research at the moment, my husband has been right behind me--and sometimes ahead of me--all the time, going to every appointment, researching, and endlessly discussing scoliosis with me. Because he tends to be the optomist and I'm the pessimist, he has been really grounding for me, reminding me that we need to take one step at a time. This is especially important when I feel frantic, worrying we're not doing the right thing, or enough things.... we are self-employed with an office at home, which has its downsides, but we are fortunate to have quite a lot of flexibility in our lives, which is why we do what we do.

    I realize it would be quite a different picture without him.

    Mary Ellen

  9. #2589
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    Sep 2007
    Posts
    338
    Ruth, remind me--what is PANDAS?

    Both my grandmothers had alzheimers, along with my mother-in-law. I remember clearly the last time my father's mother knew who I was, and I treasure it. I'm sure this will be a Christmas you'll remember for a long time.

    Mary Ellen

  10. #2590
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Quote Originally Posted by MATJESNIC
    I agree that it is so rude for strangers to ask you personal questions. Most of you know that I am a special education teacher part time. Right now I am only working with two children. One little boy has downs syndrome and it's a small world because his Mom and I were sorority sisters in college!!! Anyway, sweetest little almost-3 year old. Smart and adorable. Mom told me that strangers actually come up to her in the supermarket and say things like, "Oh, you poor thing." or "I give you so much credit. You must be such a strong person." or "Did you know you were having a child like that?" or the best one being someone she knows quickly walking down another aisle to avoid them completely. She just wants people to see her son as a little boy not as a disability.
    Melissa,

    I think I may have told you but one of my best friends has a son, a few months older than David, with Downs Syndrome and she has told me she's heard equally ignorant remarks. I find it hard to believe that people could be that insensitive and callous. Do they EVER think how their remarks might sound to the person hearing them?? And you are exactly correct - my friend wants people to see her son as a young boy (he's SUCH a sweetheart too), not as a disability.

    Even David, at 9 years old, figured out long ago how to treat Anthony and I'm proud to say that David is great with him - I don't know if he got his compassion from all he's been through or from seeing kids at Shriners with all sorts of disabilities - but he is so patient and easy-going with Anthony (he pretty much has a "roll with the punches" kind of personality anyway) - there are some things that Anthony and David can't play together, but David will just try something else with him. He doesn't treat Anthony "differently" even though he realizes, obviously, that they have to do things a little differently than when he's with his other friends. But he tries to be very nonchalant about it.

    Can't adults figure this out????

    Sorry, I'm rambling..................
    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. #2591
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    369
    Melissa: Yes I am from England. I moved to Canada when I was 18.

    Mary Ellen: PANDAS is Paediatric AutoImmune Neuropsychiatric Disorder Associated with Strep. Esme got this from a strep infection - most likely related to the chicken pox. The first signs there was something wrong were - she came home from school one day and wouldn't let me throw away her left-over lunch - she got worse from there and developed full blown Obsessive Compulsive Disorder. One day she was okay the next day she wasn't - it was incredibly frightening. After a barrage of tests the doctors still couldn't figure out what was wrong. My husband found PANDAS on the internet and realized she fit the pattern. PANDAS was a newly identified illness which is now widely recognized by the medical community. Esme is now well again from this although it took about a year for her to recover. There is no treatment per se. It goes away in time. She took prophylatic antibiotics (amoxycillin) for about a year and a half to prevent a new strep infection. We have to vigilant now if she has a sore throat and be sure to have a throat swab done in case it is strep so she can be treated immediately to reduce the impact of the PANDAS.

    Ruth
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

  12. #2592
    Join Date
    Mar 2004
    Posts
    1,138
    Quote Originally Posted by jillw
    ... I have felt that most of the people reading and posting on these boards are more likely the people who don't blindly accept their doctors' advice for treating scoliosis and all have a bit of the fighter in them...

    It was Remembrance Day in Canada on November 11 and I guess all around the world. I read the poem "In Flander's Fields" that day as I do every year. The last verse of the poem is so moving for me not only because of the men who died in battle but also the foe can be anything....scoliosis etc. It was written by a doctor. I know it's kind of weird to associate this poem with a medical condition but I do feel as though many of us are in the battlefields.

    Take up our quarrel with the foe:
    To you from failing hands we throw
    The torch; be yours to hold it high.
    If ye break faith with us who die
    We shall not sleep....

    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

  13. #2593
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    Sep 2007
    Posts
    338

    Pandas

    Wow, Ruth, that's amazing. I've never heard of PANDAS. Thanks for the info--so many things out there we don't know about, and how great your husband got to the bottom of it!

    Mary Ellen

  14. #2594
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    369
    Mary Ellen:

    Yes it was great that he figured it out. Esme was having so many medical tests too (MRI's, CT scans, nuclear scans, heart tests, countless blood tests, etc.) and his finding what was wrong put an end to all that. The poor child was put through so much! I think we learned then to question everything that is done to either of our children - to make sure it is absolutely necessary - before it is done.

    Ruth
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

  15. #2595
    Join Date
    Sep 2005
    Posts
    877
    Very moving, Celia. We all have one common enemy that unites us.
    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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