Toddler before starting chelation

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

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?

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?

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.

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

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.

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!

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.

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.

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.

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. 

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??

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.

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.

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.

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 !