Discussion Forums > Thalassemia Major

Toddler before starting chelation

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MomI:
I feel the same way. Can you tell me how they determined that your child should start chelation? Did they look at ferritin levels? If so, for how many months?

I'm trying to get her seen at Boston now by dr neufeld. Andy recommended him to other here. But the date I got is for dr Bauer because dr neufeld is away until November. I wonder if I should wait or not. I'm afraid we are extending chelation.

JV:
Talk to Bostonian_04, I believe she goes there. Don't worry about starting chelation at exactly 2 years old. I believe that they use that as a guideline. My daughter started at 26 months. As long as you do it and do it every day she will be just fine. Don't worry at all!

Canadian_Family:
I agree with what doctor advised you. Ferritin levels, though good indicator of iron in body but not reliable (for number of reasons). An MRI at this stage with anesthesia is on the cards to make sure your child start correct dose of iron chelation. My daugther went throguh it when she was 2, other children in SickKids go through it.

With advancement in technology and non invasive measures to determine iron, doctors are taking another leap at the managment of thalassemia. This is a good sign. Do not be afraid.

Note : if you are not satisfied, you can take a second opinion at Boston Children Hospital or Oakland.

Bostonian_04:
Hi MomI,

I will reply to your PM. But do want to point out (as Canadian_Family also mentioned) that whatever your doctor is suggesting is correct. The baseline MRI is needed to know the correct liver iron. The ferritin number by itself is not accurate. also at this young age, the chelation toxocity, growth and development etc have to be taken into consideration for normal development of the child. So i feel your doctor is suggesting what is best for your child in the long term. My daughter had her 1st baseline MRI under anesthesia @ 2 yrs before starting her chelation. Now we are doing the non-invasive SQUID at Oakland children's. Do not worry about starting chelation exactly at 2 yrs old...my daughter started chelation at around 27 months  when her ferritin was close to 2000.

Andy Battaglia:
I'm going to disagree here. The need for chelation is based on the number of transfusions taken and is normally recommended after 10 and no more than 20 transfusions. I see no reason for an MRI at such a young age. It's a simple enough matter to count how many units of blood have been taken, and chelation should begin once this predetermined level is reached. It's actually very simple math. Once a child has chelated for a couple years, then further assessment is needed, to make sure the chelation program is working as intended, but until then, ferritin measurements over time do give a general pattern and will tell you if chelation is doing the job. It's amazing to me that in the past 5 years we have seen doctors go from recommending MRI at age 6-8 to MRI at age 2. Perhaps they feel that parents will take chelation more seriously with scan results in hand, but in my opinion, the unnecessary risk of anesthesia is being introduced when it doesn't really need to be. Of course, this also means parents are expected to be diligent about chelation and not make excuses for missing doses. I think from what they've seen at the Centers, and from what I have heard doctors express at conferences, doctors don't have faith that enough parents will comply 100% unless they have seen direct evidence of iron loading. Again, iron loading is simple math and must be assumed to be occurring in transfusing patients. I believe it is denial of this simple fact by parents that has eventually led to the recommendations for early MRI scans. So, much depends on how seriously the parent takes chelation. I have heard the frustration in the doctors' voices when they talk about the subject of chelation, so I do get their point of view.

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