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Frequent Mri's

Discussion in 'Health Issues' started by Gaiya3, Jun 13, 2017.

  1. Gaiya3

    Gaiya3 Gold IL'ite

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    As a part of Clinical study a teen kid has to get Frequent MRI's along with other tests once in two months . Kid is at a risk of a medical condition due to which the above is required. Kid/ family can opt out of the study program but there is no other way for diagnosis or treatment. Parents are not comfortable in proceeding but kid wants to try it out after discussion with the counsellor. Kid is highly myopic and is on watch list for retinal detachment. Kids family is trying to speak to the Pediatrician's office with no luck. Pediatrician just washed their hands off after handing the kid over to the clinical study program.
    What are the risks of frequent MRI's?
    Will it affect eyes /vision with pre-existing myopia?
    Thanks in advance
    Gayathri
     
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  2. Laks09

    Laks09 Moderator Staff Member IL Hall of Fame

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    Is this clinical trial FDA approved and has a safety study been completed? A safety study is what details the testing and material used in a clinical trial and its safety. If something is unsafe then it won't get an approval for actual study.

    That being said, an MRI every couple of months seem a little extreme. How many such MRIs do the study entail? If it's more than three, I would not agree to it unless the study's director spoke to me about the safety of the study.
    Not all clinical trials are under the purview of a governing body(FDA) and unless it's an approved trial, I won't take the risk for my child.

    The pediatrician can't say much about these things. It's the parents decision. It's a very hard decision to take a child for a clinical trial especially ones involving sedations, MRIs and procedures. The unknowns are so hard to justify. Unless safety is well established, I would steer clear. We don't know if the benefits outweigh the risks. That the nature of clinical trials in general.
     
  3. sokanasanah

    sokanasanah IL Hall of Fame

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    For how long? How many MRIs total?
    Is there a treatment? What is 'prior probability' (a physician can explain what that means!) that given the symptoms the child has this condition? Next, given the condition what is the probability that the treatment will be efficacious? As @Laks09 pointed out above it's a risk-benefit calculation. Not easy to make, since clinical trials operate at the edge of science, trying to break new ground.
    I don't think there's any evidence for this. The MRI itself appears to be safe, but the contrast agents used are still being followed for their long-term effects.

    You need to consut a knowlegeable physician with the trial protocol and patient consent forms in hand. The average pediatricaian is not equipped to deal with this.:beer-toast1:
     
    Last edited: Jun 13, 2017
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  4. justanothergirl

    justanothergirl IL Hall of Fame

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    Something along these lines.
    'And yet, you try'
    Not an MRI but a CT scan triggered a fatal sequence of events.
    Short answer we have much to learn. IF the parent is not comfortable with the options provided..then please please question..seek alternate opinions.
     
  5. sokanasanah

    sokanasanah IL Hall of Fame

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    Not entirely clear, but possible. However, this is an exceedingly rare situation, mostly testable, not applicable to MRI which uses magnetic fields and not radiation.
    True.
    Always a good strategy.
     
    Last edited: Jun 13, 2017
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  6. justanothergirl

    justanothergirl IL Hall of Fame

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    In general MRI is a safer option. That said the long term effects of contrast imaging is still an open issue esp when there have been repeated scans .
    Milan Gambhirs is def a rare case and much work has been done since the publication of that article. The evidence increasingly points to a trigger from the CT scan.
     
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  7. sokanasanah

    sokanasanah IL Hall of Fame

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    Here is a start on making thoughtful decisions re: particiaption in cinical trials:
    See:
    CISCRP
    Questions to Ask
     
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  8. sokanasanah

    sokanasanah IL Hall of Fame

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    Yes, but, as described in the article, the critical factor is really the underlying inherited genetic abnormality, manifesting as different cancers on the maternal side. This is very rare.
     
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  9. Gaiya3

    Gaiya3 Gold IL'ite

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    Thanks @Laks09 @sokanasanah @justanothergirl . Please pardon me for not answering each of you individually, If there was a group PM I could probably give/ask more details. Thanks for sharing a lot of information.
    How many MRI's - 5 in a period of 10 months and based on the need there might be 3 more in the following year. Unsure if it is a contrast one every time.
    EEG Recording to monitor brain activity once every two months for an year and other clinical tests.
    Is the diagnosis reliable ? Parents are not convinced.
    Is there a treatment? If the child does not participate in the study, they mentioned that there are other ways to help. It was pediatrician's office and the counselor the kid visited recommended this as the next step. FDA approval is not mentioned in any of the document provided

    Thanks once again for providing information and links. It will be very helpful.

    Can this post be removed by mods Later as it is too much details. Have not used personal messages here
     
    Last edited: Jun 13, 2017
  10. Shanvy

    Shanvy IL Hall of Fame

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    I feel thats a tad too many mri's. Thats one every 2 months. Ask and ask questions. Study trials aways tether on the edge of permissible protocols.

    Even if the teen is comitted to going through it, don't they give a clear picture of how they think this would go.

    I think we have a oncologist in our forum , did i read it wrong or am i right.. @WiseAgnes tagging you here.

    Maybe you should go on personal
    Messages and find a way to discuss.

    Hugs and loads of wishes that things work out for the teen and the family. It should be really hard for all involved.
     
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