Discussion Forums > Thalassemia Major

Toddler before starting chelation

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MomI:
Hello everyone,

My daughter, who is thal major, turned 2 this month. I know chelation should begin. I went to the excellence center in NYC and the dr said my daughter needs to be put under anesthesia and get an nor done because it's crucial they see how much iron she has in her liver. She said ferretin levels don't give adequate readings. I really don't want to do anesthesia or MRI with such a small child!  I am worried.
What do you suggest?

Thanks

Dharmesh:
Hello
This is a totally weired advice. Though ferritin is not a reliable but it is the only report which was guiding thals since long for chelation purpose.
I think u should check the ferrtin report. And change the doctor and the center. Though andy can guide well on the center point but i am aware that OCH ockland children hospital is best in USA.

BTW How many blood transfusion has been given to ur child? When the first bt give means at what age?

JV:
MomI...I agree with Hanumant..your daughter is way too young for an MRI and I would switch Doctors as well. She is only 2 and she wont present that much iron anyway. When did you start transfusions?

MomI:
Hello,

My daughter started transfusions when she was 5 months young. She has been getting transfusions consistently every 3 weeks. Her hemaglobin count has been 10 or above (sometimes 9 or so). Her last two ferritin levels (one done about 5 months ago) were 800 and (one done this last month) 1500 i believe. The excellence center doctor said she will have her do more ferrirtin levels for a couple more months to see what they are. She said they arent reliable because they can rise due to other factors, like a cold. Also she said if she only relies on the ferritin levels than most likely she will not get an adequate reading and if chealation was to start based on that, then my daughter could get toxicity due to the chealation and will have worse side effects from it. So she feels more comfortable doing an MRI to be 100% sure so my daughter does not get toxicity. But I feel the ferreitin levels should be enough. And usually dont they start at 2-3 years of age? Also, she says I need to consider what they used to do which is  a liver biopsy and basically be grateful for MRI.

Please advice furthur on what to do. I am worried my daughter should be on chealtion and isnt due to this.

JV:
I would definitely listen to what Andy has to say but in my opinion an MRI is completely premature at this stage. Typical Doctor trying to do an unnecessary test as well as trying to scare you. My daughter is 4, has been receiving transfusions since 6 months old and chelating for over 2 years. We go to CHOP in Philadelphia and the doctors there don't think she will need an MRI till 5. I understand they want a baseline however she is only 2 and hasn't been transfusing for that long. I cant believe the Doctor even mentioned a liver biopsy...she is 2!

Again, I would listen to Andy but in my opinion it would be ridiculous to do an MRI....I am not a Doctor but I am a very active parent (as are all parents on this site) with a daughter with thal major

Hope that helps,

James

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