Time for exjade

Hi
My sons serum ferritin has crossed the 500 threshhold and he will be getting his 10th transfusion on the 9th of September. The doctor said we will probably be starting exjade at the time. He indicated that they will be monitoring liver and kidney functions once we start. I have also read here about rashes and diarrhea as side effects and that it is better to start at a lower dose and gradually increase. Any advice would be highly appreciated.
Zahra
PS There is a chance his ferritin was high b/c of his H1N1 infection and so it could be less by the next test and exjade is delayed.

Zahra,

How old is your son,exjade is not for kids below 2 years of age.

Zaini.

I would also be hesitant to recommend Exjade before two years of age.

Does anyone here have any experience giving Exjade to a child under age two?

Dear Andy and Zaini,
Wow .........the things you learn here. The doctor made it sound absolutely normal for exjade to be started but he wasnt the paediatric haematologist . So in the end he decided to wait tilll the next visit when the PH willl be back from vacation to make a decision about starting exjade. Also he mentioned there is a possibility that the ferritin is transiently high b/c of my sons swine flu infection. I do hope its so and exjade is postponed.
Zahra

He is 15 months old. Will be 16 months old by the next visit. What do they do for high ferritin before two years of age then? What is considered high enough for chelation. before I had been told 1000 but now 500.
Zahra

Hi Zahra
The doctor also mentioned today that iron remove will take place if it's above 1000, hope this is helpful to you.

Zahra,

Usually iron doesn't get very high before two years of age,and yes doctors do say here that wait till ferritin reaches 1000,chelation is usually started when kids turn two,i know only one person who started her son on chelation when he was 18 months,our moderator Sharmin,she started her son on chelation when he was 18 months old,but she started with desferal,exjade wasn't available at that time i guess,so if you start chelation early wait atleast when he turns 18 months and then you can start him on desferal for six months until he turns two and is ready to try exjade,i won't feel comfortable starting kid of your son's age on exjade,but on the other hand starting chelation early is a good idea,but if you don't mind needle pricks.

Zaini.

Hi Zahra,

As Zaini said, I started my son on chelation at 18 months.  With desferal it is usually recommended to wait until 18 months because earlier than that it can affect bone growth.   It is also recommended to not use desferal until iron levels reach 1000 because it can lead to side effects - such effects on vision and hearing.  I do think that it may be okay to start on a low dose of exjade earlier than that, and even when iron levels are below 1000.  Exjade should not affect bone growth, and in very low doses it is not likely to cause other side effects either.  The benefit is that if iron levels are kept low, by not allowing them to get higher than 1000 - one can maintain a small dose of exjade and never let iron build up.  This helps to avoid iron related problems and chelator toxicity.  Using exjade, one can also avoid the trauma of needles and affects on the spine that desferal can have.   Please do verify this with your doctor.

Best of luck,

Sharmin

Hi Zahra

I hope that you get your answer soon.  Take care of yourself and your son.

Jade

Hi Everybody,
I finally got this issue cleared up and as usual your advice was invaluable. Basically you were righ that he is too young for exjade. The doctor who had suggested starting exjade had assumed he was over two by looking at him. He is quite tall and has done almost everything early so I dont blame him .He realised he was younger after looking at his file and said we cant start exjade till after he is two years old. The ferritin above 1000 thing holds also. Right now my sons ferritin is 610 after 10 transfusions. Today was the 11th.
One other thing I noticed in his reports today was that his total protein and creatinine are slightly below normal levels. The doctor thinks its  reflection of his almost vegetarian diet. H e eats eggs and loves dairy and fruits. Vegetables are also liked but he really dislikes meat. Anyone else notice this in their reports or have any other idea why or how to correct it?
Zahra

Hi Zahra,

Keep in kind that once he does start on Exjade, that this generally will drive those levels up some, so starting out on the low side is not a bad thing. Low creatinine levels are consistent with a vegetarian diet and are not a cause for concern.  I think his diet will help keep his ferritin down by limiting his iron intake and also providing good amounts of antioxidants. As long as his diet is balanced and he is getting dairy, there is nothing to be concerned about.