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Thread: new dx and frustrated

  1. #1
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    new dx and frustrated

    Hi my name is laura and my daughter is 8 years old, she has a history of congestive heart failure as a new born requiring open heart surgery, due to that surgery and severe asthma she has a bell shaped chest. we just discovered that she has scoliosis she has a 23.3 % curve.
    We were seen at Shriners on Friday and they are going to see her again on Feb 2. At this time they are just going to wait and see. the doctor we saw said that bracing does not work well and they have not seen very good success rates with bracing. All the research that I have done says other wise, it says bracing helps.
    I am worried because she has been having some shortness of breath and I do not believe that she can take her curve getting worse because her chest is already deformed. They did not do any MRI to make sure it is not something causing her Scoliosis. I want to prevent or put off surgery as long as possible without causing her curve to be worse. My daughter has down syndrome and is very hypotonic(very low tone muscles)
    Should they do an MRI?
    Should I push for bracing? I believe or want to believe that it will help
    please help any information would be helpful
    Last edited by laurasnyder; 11-02-2009 at 03:12 PM. Reason: miss spelled word and added a sentence

  2. #2
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    Quote Originally Posted by laurasnyder View Post
    Should they do an MRI?
    Should I push for bracing? I believe or want to believe that it will help
    please help any information would be helpful
    Hi Laura,

    I am sorry to hear about the diagnosis.

    These questions you ask a good ones but they can only be answered by an experienced pediatric orthopedic surgeon.

    If they didn't do and MRI and you think one is in order then you should ask them why they didn't do one. Then get another opinion. And another until you understand why they didn't do one or until they do one.

    As for pushing for bracing, that again is something to ask the surgeon. But I must say, braces are tough on kids with normal chests. I think it might be outright contraindicated in your daughter's case but again, I don't know that. There is no good evidence bracing works so it's not like you are missing some great boat on that as the surgeon at Shriners already told you.

    It seems like some more opinions might ease your mind on these questions. I encourage you to get them.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
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    [QUOTE=Pooka1;85198]Hi Laura,

    I am sorry to hear about the diagnosis.

    These questions you ask a good ones but they can only be answered by an experienced pediatric orthopedic surgeon.

    If they didn't do and MRI and you think one is in order then you should ask them why they didn't do one. Then get another opinion. And another until you understand why they didn't do one or until they do one.

    As for pushing for bracing, that again is something to ask the surgeon. But I must say, braces are tough on kids with normal chests. I think it might be outright contraindicated in your daughter's case but again, I don't know that. There is no good evidence bracing works so it's not like you are missing some great boat on that as the surgeon at Shriners already told you.

    It seems like some more opinions might ease your mind on these questions. I encourage you to get them.

    Good luck.[/These questions you ask a good ones but they can only be answered by an experienced pediatric orthopedic surgeon.QUOTE]

    Hi Laura,

    Be careful with people who post things like this person just did. I am 34 and have had severe scoliosis my entire life. I am a Chiropractic student and my father has been a Chiropractor for over thirty five years. My point here is that don't dismiss Chiropractors because some dingy lady like the poster above says so. Orthopedic surgeons are great, but Chiropractors are great also. There are good and bad doctors in every specialty. Let me be the first to give you the facts. As a Chiropractic student we study and test over everything the med students do except the pharmaceutical aspect.

    My advice would be to look up your local Chiropractic college and find a doctor there, they always have great doctors. I can tell you from first hand experience that the right Chiropractor can be the answer for many people, it may not be for you but please don't deprive yourself of this option because of dingbats like the one above. Orthopedics are great, I have a DO that I see regularly. The things that a Chiripractor might help you with that the surgeons won't (successfully) is the other problems that go along with scoliosis like the rot gut (digestions)(gas) problems, the high rate of attention deficit, hypoglycemia, love for sugar - things like that are common with scoliosis, these are things I learned from Chiropractic and is partly why I decided to invest over a hundred thousand in my education to become one.

    If anyone thinks Chiropractors are not doctors I challenge them to take a look at the curriculum that we have to take and the board exams we have to pass. Like I said there are bad doctors and strange ones in every field but keep an open mind. Like I said before I've lived with scoliosis for over 33 years and if I can be of any help please don't hesitate to ask.

  4. #4
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    Chiros are not qualified to treat scoliosis. Only experienced pediatric orthopedic surgeons are qualified to treat children with scoliosis and only experienced orthopedic surgeons are qualified to treat adults with scoliosis.

    Chirobase, a division of Quackwatch dealing with all the wacky and dangerous chiros and their woo-woo methods exists for a reason.

    http://www.chirobase.org/

    Chiropractic is so saturated with unscrupulous types that it is very hard to find the relatively few who are honest. Chirobase can help in this regard.

    Chiros are not allowed to use the "Dr." Title in the UK for a reason.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #5
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    Quote Originally Posted by frolicin View Post
    If anyone thinks Chiropractors are not doctors I challenge them to take a look at the curriculum that we have to take and the board exams we have to pass.
    Then why can't any two chiros point to the same spot on a radiograph to say where the "subluxation" is? Maybe because it isn't rigorously defined or is imaginary.

    Read that Chirobase site for an explanation of this as you don't seem to be aware of things like this.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  6. #6
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    Hi Laura,

    I'm sorry to hear of your daughter's diagnosis.

    I was going to say that perhaps because of some of her other health issues, maybe bracing is contraindicated, I don't know, I'm just speculating. But I do know of instances where that is the case.

    I didn't see if you posted which Shriners Hospital you went to. We go to the one in Philadelphia and it is EXCELLENT. In fact, the team there is noted for their treatment of scoliosis, particularly in younger children like your daughter (i.e., juveniles). That said, all of the Shriners Hospitals are staffed with qualified pediatric orthopedic surgeons - the only specialists that should be treating scoliosis - so you were at the right place.

    If you feel you need to get other opinions, though, please do. There are so many excellent pediatric orthopedic surgeons in all parts of the country - so depending on where you live, I'm sure you could get some recommendations here.

    Best of luck to you!
    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/

  7. #7
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    Thank you

    Hi Thank you all so much for your responce's it is very helpful to hear others experences. We go to the Shriners in Greenville SC. There is a lot to think about with Scoliosis and hopefully I will make the right decision for my little one. I only want what is best for her and am willing to do what ever it takes to achieve this. I look Forward to hearing more experences and suggestions
    Thank you
    Laura

  8. #8
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    Quote Originally Posted by frolicin View Post
    Hi Laura,

    Be careful with people who post things like this person just did. I am 34 and have had severe scoliosis my entire life. I am a Chiropractic student and my father has been a Chiropractor for over thirty five years. My point here is that don't dismiss Chiropractors because some dingy lady like the poster above says so. Orthopedic surgeons are great, but Chiropractors are great also. There are good and bad doctors in every specialty. Let me be the first to give you the facts. As a Chiropractic student we study and test over everything the med students do except the pharmaceutical aspect.

    My advice would be to look up your local Chiropractic college and find a doctor there, they always have great doctors. I can tell you from first hand experience that the right Chiropractor can be the answer for many people, it may not be for you but please don't deprive yourself of this option because of dingbats like the one above. Orthopedics are great, I have a DO that I see regularly. The things that a Chiripractor might help you with that the surgeons won't (successfully) is the other problems that go along with scoliosis like the rot gut (digestions)(gas) problems, the high rate of attention deficit, hypoglycemia, love for sugar - things like that are common with scoliosis, these are things I learned from Chiropractic and is partly why I decided to invest over a hundred thousand in my education to become one.

    If anyone thinks Chiropractors are not doctors I challenge them to take a look at the curriculum that we have to take and the board exams we have to pass. Like I said there are bad doctors and strange ones in every field but keep an open mind. Like I said before I've lived with scoliosis for over 33 years and if I can be of any help please don't hesitate to ask.
    I would be wary of anyone who posts such ad hominem attacks against someone else on this forum (read: "dingy lady" and "dingbat").


    To this poster, your credibility dropped 500% in my book. Do you think that the parents on this forum have an easy decision to make when it comes to considering surgery for their child? Obviously, not, unless you are a parent yourself.

    *You* are the best advocate for your child, Laura, and I would suggest that you also look for more than one opinion from an experienced surgeon. You can try looking for surgeons at www.srs.org.

    Take care--for the most part (and I say that b/c of the above rude post), you will find great support here.

  9. #9
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    Quote Originally Posted by laurasnyder View Post
    Hi my name is laura and my daughter is 8 years old, she has a history of congestive heart failure as a new born requiring open heart surgery, due to that surgery and severe asthma she has a bell shaped chest. we just discovered that she has scoliosis she has a 23.3 % curve.

    Should I push for bracing? I believe or want to believe that it will help
    please help any information would be helpful

    Hi Laura,

    Sorry to hear about your daughter's difficulties. Don't listen to the chiro, anyone with your daughter's history should especially be being seen by no one other than a most highly qualified pediatric orthopedic surgeon. As you probably know, chiros are not medical doctors and their training is MUCH less than an MD, especially an orthopedic surgeon. Some chiro colleges don't even require a bachelor's degree to attend.

    Only an experienced pediatric orthopedist is going to be able to answer the question of bracing for your child...she has many conditions that are not the normal state for most Juvenile or Adolescent Idiopathic Scolisois (AIS) cases.

    Good luck to both of you, I know it's a terribly difficult time for all involved.

  10. #10
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    Nov 2009
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    3

    Shriners called

    Hi Thank you to everyone for the information and I know I will need to pick your brains more.
    Shriners called and It seems like that when we were down there we saw a 2 PA's we the female PA went to the spinal specialist and reviewed Tsz-yan's case with him, He told her that Tsz-yan needed a MRI due to her age and she deffinatly needed to be braced. So on January 19 we are going to get molded for a TLSO brace. the MRI is going to be scheduled because she will require sedation for this. I must admit this make's me feel better, I just want what is best for her and would like to prevent her curve from getting worse if possible.
    does anyone know about a TLSO brace?
    How do they mold for this?

    I thank you but I just dont think Ciropractor is right for my daughter , I am sure there are some good ones out there but they scare me, but that is just me. No offence to anyone who is one or use's one.
    Thank you so much
    Laura

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