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Is it worth it to try and get a cure if.........

Discussion in 'Parents of Children with Type 1' started by mom to a sports nut, May 7, 2007.

  1. mom to a sports nut

    mom to a sports nut Approved members

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    the treatment to get the cure is really dangerous??

    I'm not being controversial, just wanting to hear other opinions. Reading recently I read about immune suppresion therapy with transplantation, chemotherapy etc as "possible" ways to attain a CURE. At this stage in your child's journey is this something you would even consider?

    I guess for me a real risky way to find a cure. A treatment that could be life threatening in and of itself just wouldn't be worth it at this point for my Daughter. She is doing as well as can be expected with her diabetes and making a choice to make her sick to get her better would be something I don't think I could do at this point.

    I want a cure that is just a cure and not a risk also!
     
  2. MrsBadshoe

    MrsBadshoe Super Moderator

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    Nope I would never put my child through this treatment.
     
  3. thebestnest5

    thebestnest5 Approved members

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    I agree. I would like a cure that doesn't carry the risk of devastating or deadly side effects. :cwds:
     
  4. Big Hair Momma

    Big Hair Momma Approved members

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    Not a chance! The risk is too high to even consider it.
     
  5. Deannas mom

    Deannas mom Approved members

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    Not at this point and time, not enough info, or results on long term affects. We live with Diabets ok for now, until I se the results after a longer period of time has passed there's no way I would put my 11year old through it. Ask me again in about 10 years
     
  6. KatelinsMom

    KatelinsMom Approved members

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    No way. I would not risk my daughter's health/life with something so risky.
     
  7. madde

    madde Approved members

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    This does sound good, and maybe one day will prove to be a true cure for diabetes.

    I wouldn't allow Madison to get this treatment, until waaaayyy later. Just as someone else said, ask me again in 10 years.
     
  8. TheFormerLantusFiend

    TheFormerLantusFiend Approved members

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  9. jpb286

    jpb286 Approved members

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    I would do it, but that is because I am old enough to make my own independent-decisions regarding my health. I can logically weigh the pros and cons and I would still give it a shot, even if the therapy is "dicey".
     
  10. EmmasMom

    EmmasMom Approved members

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    It would depend on what the risks were for the particular procedure. I think if I knew that there was a small risk of complications and a very great chance that she would be cured it would be a tough call. I would never do anything that would be very risky or possibly life threatening.
    Of course none of this stuff will ever be approved for kids in the US, so it's not really going to be an option until our kids are grown.

    I just went to a presentation last week where an ADA funded researcher was giving us all the stats and info on the current research in the US. It really made me wonder if we'll ever see a "cure" that doesn't come with some serious risk.

    She's convinced that if you destroy the immune system, like they did in Brazil, and then do an islet cell transplant you will have a cure. No anti-rejection meds would be required.

    On a side note; She also showed us some very interesting stats about people that have had islet transplants. Even though many eventually go back on insulin, they maintain much better control, normal A1C's and few lows. It's like a strong honeymoon, very strange. Of course these people are on anti-rejection therapy... no thanks!
     
  11. cydnimom

    cydnimom Approved members

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    Never, for myself or for my son. The risks are just to dangerous - as well as - how can you give informed consent when "they" don't even know what all the side effects will be (or are unwilling to disclose it all). If they told you absolutely everything they thought could happen I think they would have very few participants.

    Now, that being said, I'm grateful for all those willing to take the risk for research.

    The sad thing about the islet transplants is that almost all patients end up back on insulin and they are still required to take the antirejection drugs because the docs claim that their immune system will over react and start attacking other parts and who knows what. Also the presumption, that if you stop taking the antirejection drugs that they would not work again if you happened to need lets say a kidney transplant later on down the road. So, these people are back on insulin and they have to stay on the drugs that make you feel horrendous! Sorry, just a personal rant about it all.
     
  12. Twinklet

    Twinklet Approved members

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    I wouldn't do it for myself or my daughter. Too many risks, too few permanent outcomes.
     

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