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One Year follow up

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Zaini:
Thanks Dore  :hugfriend for your kind words,i am praying that Lil Z's SGPT will be down by the end of this week.

Zaini.

Sharmin:
Zaini,

I hope that lil Z's SGPT levels will be good soon.  The dfo/exjade study will come to an end soon and the data should be published soon.  The results have been very positive in compliant patients, therefore I think that more doctors will be encouraged to prescribe to combination in the near future.  I think that lil A was able to try this combination because things were spiraling out of control for us a year ago as his iron levels approached 3000.  With his high tx needs and the beginning of iron overload, the docs felt that enrolling him on this trial may be a way of removing iron as well as keeping of with the excessive iron that was coming in.  I am happy about the iron at this time, however I am afraid of the antibody that may still lurk as we have run out of options to deal with it.  With the antibody comes fatigue, multiple transfusions and increased iron.  It is very scary.  My hope is that the antibody is not going to come back this time. 

I hope that the results of this trial will help many people and that lil Z's doc will prescribe combination therapy.  Within a short time lil Z's iron levels will come down and then she can continue with exjade alone. 

It would not hurt to take exjade away completely for a few days because she is not overloaded.  Once the SGPT issue is reversed then she can resume - I think that this may be the best way to make things return to normal.  Way had to do this with lil A when he was 6 years old (we took away desferal for 1 month) and the toxicity was completely reversed and then we resumed desferal.  In lil Z's case a few days should be enough.

Best of luck Zaini, always thinking of you and lil Z:)

Sharmin

Andy Battaglia:
Sharmin,

I think concentrating on building little A's immune system will be of some value in countering the antibody problem. Continue to do everything you have been doing. I have seen this with other patients and often it does go into remission. The supplements play a key role in maintaining a healthy immune system, and you should note that other illnesses can open the door to the antibody by weakening the immune system, so keep him as healthy as possible and always, always, always, reinforce the idea that he should wash his hands after contact with anything public. I would also suggest using a neti pot to keep his nasal passages clean. This really does cut down on the number of colds one gets and even helps with allergies. Keeping him healthy will help his immune system function at an optimum level.

I'm heading out tonight to go back home, so I will not be online for awhile. I'll check in late tonight.

Zaini:
Ok so may be i was wrong  :huh i thought cutting off chelation totally wasn't good,so i kept giving her 400 mg,since she just got transfused on saturday and that was confusing to me that there would be more free iron in the blood which can cause damage  :huh to tell you the truth i am still unable to decide whats best  :( :dunno .

Zaini.

Sharmin:
Thanks Andy,

I will focus on the supplements.  I hope that you enjoyed your vacation, have a safe trip home.

Zaini,

Usually it is not a good idea to stop chelation completely, but in certain cases it is important.  I think that it is a good idea to give the liver a complete break before resuming exjade - and chances are that her levels will be good in the future.  While she is off of the exjade increase her IP6 - give it to her at least 3 times a day.  Also give her more fresh fruit throughout the day - blueberries, rasberries, cranberries - if possible.  Antioxidants will bind the free iron and protect her from damage while she is off of the exjade.  Tea will also be a good idea during this time.  I think she should be fine for a few days without chelation.  In this case it might be a very good idea.  If her SGPT does not return to normal after taking her off for a few days, perhaps you can try L1 for a month and then return to exjade. We are lucky that we have lot of options these days, switching for a short time can be very helpful. 

Andy, do you agree?

Sharmin

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