LFT and Exjade -- please help

My son who is 2 was on exjade 250 for almost 9 months.  He had some fluctuations of lft, alt and ast both in range of 200+  but usually trend down with time to 100+  when recently dr decided to increase dose of exjade to 3 tablets of 125mg.  His lft alt went upto 600.   Dr decided to reduce exjade to 1  125mg tablet per day for a month.  Now his ferritin increased to 1600 from 1200 on 1 tab but lft [alt] is normal 40.  

Dr has decided to increase exjade again to two tablets of 125 for controlling ferritin.  However, I am concerned that will it again cause lft to go up?  Will this time , re introduction or increasing dose will be better tolerated by by son s liver?  

Dr says if again alt go up to high levels then he will advise desferal.  
The combination of exjade and ferripox is not yet used in combination in usa.

I am terrified of needles for my son and don’t want him on desferal.  I want exjade to work.
My question is ..   will liver tolerate reintroduction of exjade ? I am already splitting the dose of exjade and giving more fluids.    Is there any other thing I can do to minimize the side effects and prevent lft from going up?  Thank you so much for your help and guidance.

We had a similar issue with my 3.5 year old. It went on for over 6-8 months and this is when he was only on .250 mgs of exjade. My local doc Told us we may have to switch over to desferal but my specialist was not as concerned because she said that u need to look at bilirubin as well. I can't remember exactly but I know eventually his body got use to the exjade and things started to stable...but it took a while. Usually whenever this increase happened they called us in again a few days later to recheck the levels and they would be ok. He was on exjade over a year before we started seeing a decrease in ferritin. 

Thanks Cari.. I feel so much better when I hear this me and my husband have been so worried.  He is so small I don't want him to go through any more pain then what he has to for transfusions.  The other big issue we are having is his weight problem.  He doesn't eat enough and he has a g-tube but still it's very hard.  He is off the chart now for his height.

Ama, make sure he stays well hydrated. This is extremely important with Exjade. Staying hydrated can help keep the liver scores lower. As Cari said, these side effects tend to lessen over time, as the body gets used to the drug.

Ama, can u explain further what a g-tube is? I have heard that initially exjade can also mess up their appetite. When r u giving it to him?  For weight gain, I'm not sure if u have tried this but give him a lot of high fat foods. Good fat ofcourse. Lots of avocados, cook in coconut oil, and use peanut or almond butter. I try to give my boys a lot of this after school. Every meal has avocados.. lol. My little one hates the texture of it so I mush it into whatever he's eating. The older one eats it luckily.

Try full fat yogurts n cheeses as well.

My niece is also underweight so I understand the concern. In our Indian culture we really like our little ones to be nice n plump so as soon as they thin out as babies the entire family freaks out lol.

Also, maybe someone else can clarify but I have heard exjade shouldn't be taken with high fat foods...
I'm not sure how true it is as I have def given it to Ari on some occasions because I just need him to drink it.  

We will be starting my second on exjade in Oct....I'm sure that will be a whole new world of issues for us to figure out...

Thank you Andy so much... We are trying to give him a lot of gratarode.  We are currently giving him two tablets of 125.  Would it help if we split the tablets four times?  I mean give him a half tablet four times in a day instead of two times?

Cari my son had a tube put in his stomach because he wasn't eating enough and was below his weight on the chart.  If he doesn't eat which he still isn't doing enough of then we give him special kind of ensure that has a lot calories so he can makeup for not eating.  We make sure not to give that milk with Exjade and give some time gap between Exjade and the milk.  We have tried everything and anything in possible for him to eat.  Sometimes he will eat and the other time he won't lol.  It's like having a full time job with extra hours Put in lol.

Ama,

Normally, I would not suggest splitting the dose so much, but with him not eating well by himself, it might be a good idea to do so to further lessen any nausea he may experience form the drug.