Discussion Forums > Thalassemia Major

Toddler before starting chelation

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Bostonian_04:
really good point Andy...too bad we did not know all these details when my daughter was 2. But to be frank, we do not regret the MRI. we knew how much iron overload she had and her chelation regimen given to by Dr. Neufeld worked very well and her ferritin has been pretty low so far. Good luck MomI in whatever you decide to do.

Canadian_Family:
Just to add to everyone's point. To do MRI or not to do MRI :)) that is optional. We do not regret MRI when our daughter was 2, is it necessary or are there alternate ways around it (ofcourse there are, as Andy mentioned).

In the end, it is a matter of choice. What is best ???? I am not sure, but I always think (if it is non invasive, there is no harm).

However, the cost ofcourse is a big factor.

MomI:
Hello everyone,
I wanted to update on what happened so far. I went to the excellence center and had a talk with the doctor. Regarding MRI, he told me it was necessary for them to know how much iron is in the liver at the start of chelation and then a year later. He also said that she would not have full anesthesia and be lightly awake. He assured it was safe and that it was crucial for her health. After thinking about a lot, I thought maybe I'll do it since it's not full anesthesia. Well, when I called they now said it has to be full anesthesia for the procedure. This was upsetting because I read about studies where young kids being exposed to anesthesia can impact their learning and behavior. So I stopped it. Now I'm just confused. My main concern is that I don't harm my child with my decision. Everyone looks at me like Im wrong in my decision. I am trying to figure things out.
Any advice would help.
JazakAllah Khairan

Andy Battaglia:
It's quite unsettling when care providers are not completely honest with you and undermines your trust in them. This just should not be happening at a Center of Excellence. Their fascination with collecting data is no excuse to lie to you about the anesthesia. If they want cooperation, perhaps they should consider being honest with you.

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