Discussion Forums > Thalassemia Major

Toddler before starting chelation

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MomI:
Thank you all for your input. When I went to excellence center, as I mentioned, the doctor mentioned how they did liver biopsies in the past. But Andy you mentioned they used to go by the number of transfusions and simple math calculations. Did they start the liver biopsies because parents weren't chelating their kids properly? It's really sad to hear that this is why they recommend MRIs. My oldest daughter unfortunately was told to do one because she had some lower back pain. I still regret doing it. It did nothing for her and she was exposed to the dangerous effects. Her lower back pain subsided on its own. She was scared in there. I can't imagine this procedure with anesthesia for a toddler. If they didn't do it in the past then there are other methods of determine chelation. So disappointing that I have to be at odds with those who administer care. Even our regular thalassemia doctor has an attitude because I question things and want other opinions. 

MomI:
Andy what is the math involved? If you can help me figure it out that would be great. My daughter started transfusions at 6 months of age. She just turned 2 this August. She has been getting transfusions every 3 weeks. I believe only 3-4 times we extended it to 4 weeks. Her hemaglobin before transfusion is kept above 9 or higher. Sometimes it may be lower (maybe 2 times).  Do you need any other information??

Dharmesh:

--- Quote from: Andy on August 27, 2014, 10:41:40 PM ---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.



--- End quote ---
I agree with you Andy. The protocol/guideline for starting chelation is Ferritin exceeding 1000 or more ;or
No of blood units taken is 10-20.
This information was shown as a poster in my thal center before 25 years and i was watching it every time i visited my bt center. And we can definitely say that it is still relevant.
In this particular case the toddeler has taken approx 25 units and ferritin is 1500 , so definitely the chelation can be started. However, as a matter of precaution, the dosage can be kept at very low level to avoid toxicity of chelation.

Andy Battaglia:
Mom1,

Liver biopsies were never routinely done on children. Before liver MRI became the standard, biopsies were done on older patients, but not on children, unless circumstances were extreme. I keep getting the feeling that they are intentionally trying to scare you into complying with their new money making policies of extending MRI's to very young patients. I do not like the rise of medical "gods" that is currently taking place. If parents behave like sheep, we will only see this increase.

Count the number of transfusions the child has had. If it is above 10, then chelation can begin at low dose to get the child's body used to the drug. Again, many doctors will push full dose immediately, which is a bad choice. Children should be started on low doses and the amount slowly increased to full dose as the child gets used to the drug.

MomI:
Thank you all! Yes they did scare me. I went in and told the do for that I won't be doing an MRI. I left thinking I am risking my child's health and being ungrateful for what's available to her. She made me think the norm was liver biopsies for children. I'm glad I know now how to deal with the doctors.  Thank you !

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