Study of Exjade (defrasirox) taken with food

Plz do reply someone

Zara,
20 months of nursing is good score but it will be the baby or you or nature will stop it at some point of time. Make a consent between you and your baby.
yes it could lead to constipation or there could be other reason as well like high temperature environment. This chelator should be consumed with enough fluid.
finding the right chelator and correct dosage and comply tirelessly with it is the life long battle.

We always ensure that Lil A always has a big meal prior to giving him exjade.  He prefers his exjade in liquid.  We always place the tablet in lukewarm water, let it dissolve, mix with plastic or wooden spoon and then add a small amount of juice.  He gets half his dose after breakfast and half his dose after dinner.  We've had some issues wiht stomach upset and reduced appetite over the years - but splitting the dose and allowing him to eat first makes a big difference.   

Zara,

Just stop the chelator for a while. The child is very young and this is the most likely cause for the reaction. Stop for at least two weeks and then start at no more than 200 mg/day for two weeks. It is more important that the child can nurse and take food than it is to chelate at this age. At this age, chelation does not have the urgency that it will later have. Stop the drug and wait until the child is eating normally and having normal bowel movements before starting a low dose. You might even consider just taking it every other day when he starts it again until you are sure his body is ready to handle the drug.

Thanks alot everyone for ur replies.
His constipation is better now. I am giving him pureed spinach every other day and this is helping him to relieve constipation. I know that spinach is very high in iron but I make it with milk and also give him milk to drink with that. I've read somewhere that milk stops the iron to absorb in the body. He don't like to eat any other fruits or veggies.

Good to know your son is doing better now Zara...for constipation, you can also give him prune juice. it will also help....and off course more veggies and fruits in diet and lots of fluids...

Thanks for ur reply but we don't get prune juice here in Pakistan. I've never seen it on any shop.

Dear Zara,

You are doing great.Its true milk help to stop iron absorption .I also always mix milk with my babies food and after 9 transfusion her ferritin is now 459.So continue it....

@ zara,
do you still need prune juice for your kid ??

We always ensure that Lil A always has a big meal prior to giving him exjade.  He prefers his exjade in liquid.  We always place the tablet in lukewarm water, let it dissolve, mix with plastic or wooden spoon and then add a small amount of juice.  He gets half his dose after breakfast and half his dose after dinner.  We've had some issues wiht stomach upset and reduced appetite over the years - but splitting the dose and allowing him to eat first makes a big difference.   

I will mention to my daughter about taking ex jade on a full stomach and splitting the dose twice a day.  What bothers me is that Ava's doctor said to cut down on her ex jade to 5 x week?  I guess this is due to her ferritin level being 113.
Ava just turned 7 what a sweetie she is my little half pint!!!!

Your doctor is right. The ferritin level is to low for a Thal under chelation! Try to keep it over 300 or lower the dose.

That is a low ferritin and many doctors would order a chelation vacation at this point. 5 days a week may still be more than needed. Also, side effects can present more of a problem when ferritin is very low, so it's not a problem to take a week or two off and let the digestive system have a break from the drug.

How much ferritin level is standard?

I would say allways around 300. When I was junger they used to say about 1000 but that's changed...

I will mention to my daughter about taking ex jade on a full stomach and splitting the dose twice a day.  What bothers me is that Ava's doctor said to cut down on her ex jade to 5 x week?  I guess this is due to her ferritin level being 113.
Ava just turned 7 what a sweetie she is my little half pint!!!!

Wow how did you manage to maintain her ferritin at such a low point.
This month my son's ferritin was 1450 and Dr suggested us that we should stop asunra and start using desferal pump. We are really confused at this point what to do?