Chelation & my 3 year old son...

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Chelation & my 3 year old son...
« on: April 21, 2010, 01:18:11 AM »
I posted yesterday for the first time.  I should have become a member of this board months ago.  My son's ferritin is 2300.  It's been staying around 2000 for months despite our efforts with Exjade.  I am starting to get a little nervous at this point.  I am wondering if anyone has any suggestions for me.  I read a different post about using desferal while he's getting the transfusions??? My son has a port and I was wondering if it could be administered through the port?  I want to try and get rid of the iron asap so I would love to hear any thoughts you may have.

Rebekah
Gabriel's mommy

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Offline Andy Battaglia

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Re: Chelation & my 3 year old son...
« Reply #1 on: April 21, 2010, 01:32:37 AM »
Yes, desferal can be taken through a port but this does not have to be confined to the hospital. IV desferal can be administered at home, with proper training. However, I would advise contacting the Chicago Center before pursuing the IV method. They may want to adjust the Exjade dose before using desferal., or perhaps even try a combination of the two drugs, which seems to work very well.
Andy

All we are saying is give thals a chance.

Re: Chelation & my 3 year old son...
« Reply #2 on: April 21, 2010, 01:40:53 AM »
Thank you!  I will relax a little and wait until we go to Chicago.  They just recently altered his dose from 250 every day to 375 one day and 250 the next.  We will give it a little time and hope it starts to work.  The doctor is trying to avoid desferal because Gabriel is so young but it may come down to that at some point...whatever it takes!

 

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