Discussion Forums > Thalassemia Major

Little Ari

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Bostonian_04:
Hi Cari,
we have similar issue with our daughter recently. Did Ari had any fever or cough etc...sometimes those affect ALT/AST levels as well. Thats what we found...Our daughter had cough and mild fever for no apparent reason and the ALT?AST levels shot thru the roof....we split the dose and had her on antibiotics and things returned to normal. so, yes, spilitting dose really helps. Definitely try doing that. For splitting doe, what we do is: give half the dose early morning and then the next half, after we pick up our daughter from daycare and reach home. so, you may not have to give the med to day care.
All the best... the recent lower ALT/AST levels are encouraging. so, I think little Ari will be fine. God bless !

Cari:
Hi everyone,

first off, thank you  all for your responses :) I just saw the response from bostonian and that its very helpful. In hoping that its actually the case right now for ari.

Our last transfusion for him was JAN 8 and at that time alt/ ast levels were back to normal.
ALT 31
AST 42
Ferritin 2101

Well, we went today for his transfusion and all the levels are crazy high.

He HAS been feeling down since thursday.  low grade fever of 99 on thursday night. Not eating much and very tired. His hg was at 8.1 today. This morning he threw up and has just been tired. Still not eating. He got his blood and has a bit more energy but still won't eat. He threw up a little again too but no fever nothing else.

One thing is that he us urinating a lot. But he's very thirsty too do he's drinking a lot.

So, heres why I'm freaking out....results for today:

ALT 1104
AST 773
ferritin 3129 (last month it was 2101)

He has been on exjade with the exception of a few weeks in nov and dec (noted above).
I have been splitting the dose AND I did not give him exjade before he got hours blood drawn today..I gave his first dose to him after (per andys suggestion from a previous post)

I know levels increase when children are not feeling well but this is pretty crazy right? I'm very concerned for one because no one can see what's wrong with him...its probably a virus but who knows...and two..the levels are just strange.

He is gaining his energy back tonight as we speak but as i, mentioned...still  no interest in any food...not even jello. Just water. Im supposed to go to get the labs redone on tues and we have been told to stop exjade again until that time.

If anyone has any insight on this please please please, let, me know. thank u all in advance :)

Narendra:
Cari - I see it as a positive sign that he is drinking a lot of water. I understand kids don't want to eat when they are unwell, but am glad Ari is drinking lots of fluids - It helps in flushing the virus.

Andy Battaglia:
I would suggest stopping Exjade for a month and then starting again, if he is healthy. Having lived in Florida, I am quite familiar with how difficult it is to prevent colds and flu, since a new wave of illness seems to hit every couple weeks due to tourists sharing their local illness with Florida.

Cari:
We had him checked today and his levels have come down quite a bit. They are now 377 and 85. Still not normal but I guess better. They are keeping him off exjade. It was a really irritating day though as they were too busy.and sent us to a lab in the hospital to get his blood drawn. they completely bruised.up his arm there. Its horrible. I've seen him get poked so many times but this was the worst way I've ever seen it done. they only likes him 3 times but they dug into him with no care.

Anyhow, I'll keep you all posted. Thank you for your help.

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