MRI hesitation..why do it??

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Offline MomI

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MRI hesitation..why do it??
« on: October 02, 2021, 02:05:42 AM »
Hello,

I have a 9 year old Thal-major child. I hear about people doing MRI scans to see the iron load level in organs and I understand it is good to have that data, but my child is young and I am hesitant to have magnetic force and radio waves go through her body. Also, the procedure is very scary for her to be put into that thing. It may tramatize her as she is very scared.
I asked my doctor what would be different with her treatment by getting the results from the MRI. She said we will know if the medication amount is correct or to increase it. Well, my daughter is already having an increase in medication due to ferritin levels and we alternate between 360 and 270 every day. So there is nothing more to change.

I feel maybe in the future it may be necessary but to do it now when it really isn't doesn't make sense to me.

Does anyone feel the same or differently? Im trying to figure all this out.

Thanks!

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Offline Andy Battaglia

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Re: MRI hesitation..why do it??
« Reply #1 on: October 16, 2021, 07:07:48 PM »
What is your daughter's ferritin level? MRI is the only sure method to determine iron in the organs, but if the child is fully compliant with the chelation at this age and does not have a high ferritin level for a transfusing patient, I would advise not putting her through the MRI until she is older and is able to deal better with the having an MRI. Eventually, it should be done, but it can be skipped for now if her chelation program is working.
Andy

All we are saying is give thals a chance.

Re: MRI hesitation..why do it??
« Reply #2 on: January 03, 2023, 09:39:20 PM »
Happy New Year to everyone!

This is a very important issue.
Doctors  want a MRI -heart , liver every 1-2 years. How necessary is that?
My child's ferritin hovers between 600-1000, on Jadenu; she is 14 years.

I am not very happy about her doing MRI every year.

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Offline Andy Battaglia

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Re: MRI hesitation..why do it??
« Reply #3 on: January 07, 2023, 08:30:22 PM »
Happy New Year hopefulmommy,

Has she had an MRI of the liver yet? At the least, a baseline should be done to make sure the ferritin readings accurately reflect the iron load. If the iron is proven low by MRI, I don't think that the MRI is essential annually, as long as the ferritin stays low.
Andy

All we are saying is give thals a chance.

 

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