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Post by jennifer on Mar 14, 2012 16:36:53 GMT -5
Since the doctors are still not convinced enought that my daughters problems stem mainly from fructose, they want to run a CT scan with iodine contrast, to rule out other possible issues. I am really concerned and do not want to inject her with anything unsafe. Does anyone know if contrast would be safe from an HFi perspective?
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susan
Full Member
CONFIRMED HFI
Posts: 114
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Post by susan on Mar 14, 2012 17:41:10 GMT -5
About this time last year, I found an enlarged lymph node on my neck. My doctor told me to get a MRI. I was assured it was just a picture. My doctor did not mention anything about an injection of something to help show the picture better. When I got there, I was shocked when the tech was about to "hook me up". I stated this was not part of my doctor's orders. I actually had to get firm. I refused.
My thinking is.....
HFI has already impacted my liver and kidneys.
Then, I have had 40 some years without knowledge of this disorder, only the strange symptoms. My body...my liver and kidneys, have already been compromised by HFI, then compromised again after 40 of not having a strict HFI diet.
Finally, I knew my liver and kidneys were going to have to filter that agent out of my body....more possible damage.
I decided to "stand up for myself' and fight the system which could not diagnosis or help me. I refused the IV agent.
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Post by Tammy on Mar 14, 2012 18:34:20 GMT -5
Is this a drinking contrast or an IV?
Regina has had both. She didn't have a problem with the IV but I make them mix the drink mixture in front of me now. One time we went through everything to make sure there was no fructose in it - just to then have the tech mix it with kool-ade. Duh! Luckily we asked why white powder mixed with water was then orange...
But this was after her liver had had many years to heal first and she was doing fine.
Tough choices. If they can still see the pics then that is the way to go when possible.
Good luck.
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Post by jennifer on Mar 14, 2012 22:23:31 GMT -5
It would be an iv contrast nothing to drink. I think they use iodine.
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Post by lynneangela on Mar 15, 2012 12:10:27 GMT -5
I have had 4 CT scans with IV's ( Contrast dye ) over the years,with no ill effects and I have HFI. Hope this helps.
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Post by jennifer on Mar 15, 2012 14:05:35 GMT -5
Thanks you, it really does help. Since we are really just learning, and have finally gotten my daughter to feel a bit better we do not want to make any mistakes. We do not yet have a confirmed diagnosis but we know she gets violently ill when she consumes anything with fructose. It great to know you have had contrast with no problems as I do not think the doc would want us to skip the contrast. She seems to really want to rule out any other possible causes for her symptoms.
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Post by ukbill on Mar 17, 2012 1:00:13 GMT -5
Ask the Doctors to confirm the IV has no Fructose , sucrose or Sorbitol used as "buffering " if there is none then you should be fine  |
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Post by jennifer on Mar 17, 2012 20:46:07 GMT -5
I have been told that she is getting both iv and oral. They usually mix the oral with juice which we will make sure they skip for her. I will also check the oral contrast to make sure there are no ingredients that would be unsafe. A bit nervous, but hoping as long as I make it really clear they will make sure it is safe.
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