How old were you when you started chelation?

From the time Hassan`s turned 2 all I can think of is chelation. No two patients are same and hence there can be no comparison but still I would like you to answer these questions of mine.

1. How old were you when you started chelation?
2. What was your ferritin level when you first started chelation?.
3. What are your ferritin levels now?

I can only answer the third question as the first two are not applicable as yet. Hassan`s ferritin presently is 870mg

Hi Maha,

It was a little different for Zainab,as she was diagnosed at 3 years of age,so we started chelation at 4 years,her ferritin was something between 1600 and 1700,and last time in april when we checked her ferritin was 1350.I think you can wait a lil bit,till his ferritin reaches 1000,i know it's not too far but still,and have you considered exjade?

ZAINI.

Hi Maha,

My son began tranfusions at age 3months, he began chelation at 18 months.  His ferritin was similar to Hassan's.  His ferritin before the antibody problem (until age 8) was always between 900 - 1200. 

Sharmin

Hi Zaini
Yes, Exjade is my first option, lets see what the hema says. Why is it that even when children start chelation at an early age they do not have a ferratin of say 400-500. Does this mean even when Hassan starts chelation when SF reaches 1000mg it is only going to rise. Is the iron you get from one transfusion is always more than the iron you can chelate in 28days?
Maha

I was about 4¹/₂ years old with Serum Ferritin of 500; now it's about 20 times more when I checked it last. A new test is due in up coming weeks. Let's hope it's a lot lower now

Edit: Just wanted to add that I started Transfusions when I was about 3 yrs. old. Maybe I was one of those Intermedias misdiagnosed as Major

Hi Sajid
Were you regular in chelation throughout these 20-22 years? All the best for your upcoming test. Wishing its a lot lower. May your persistance be fairly rewarded
Take care
Maha

Hi Maha,

I was doing pretty good when I was in Saudi Arab; but when we moved back to Pakistan things got out of hand as there was not much Desferal to be found furthermore the care at Holy Family Hospital is not much for an optimum treatment. Until I found this site where I met Asim who told me about JSF. It's been an year since I joined JSF and I'm great full I did because at HFH my Hb kept dropping and they won't let anyone transfuse sooner than 15 days and they had no concerns on how a patient is doing Desferal or other health issues. Heck I couldn't even find the doctor on his seat in his duty hours  and they recommended to visit his private clinic I have posted about my horror stories of the HFH days before in details .

Maha,
i was diagnosed when i was 6 months of age and transfused monthly thereafter. I started chelation at about 15months when my serum ferritin went over 1000. From my last conference, it was stated that previously the focus was to try and keep the patient just above 1000 but now they are striving to keep it above 500 instead so there may be a different approach now.

Hope that this helps.
Roanna

Hi Maha 
      long time for me to don't use the desferal for my son since i made for him a BMT last may  2005 any way i used to trat him with desferal when he was 3 years old and his ferritin levels was almost 1000 now i can't use for him a desferal cause i did for him a BMT and i can't use for him any kind of chelation cause it's dangerouse as Dr's in Italy and in Kuwait said the ferritin levels now is steady on 900 and less and it's not dangerouse for him     

                                 :khalifa
                             
                           one for all and all for one     

My daughter started when she was 18 months and her ferrtin was 1200. Now she is going to be five in June and last time we checked her ferritin was 2300. We never missed her desferal dosage and switched to Exjade in February of this year. We are waiting for her next ferritin test to see how she is responding to Exjade, generally Exjade results can be identified after six months.

Hi CF
Inspite of being regular in chelation your daughters ferritin kept increasing while on the other hand Sharmin said her son was doing good until the antibody problem started. Both the kids started chelation at the same age but the results are different. Why does this happen? 
maha

I remember C.F mentioning their baby having some undesirable effects with Desferal. Perhaps Desferal didn't suited her and it didn't work well with her.

Anyone can be allergic to anything. Even medicine

Maha,

As Sajid said - everyone responds differently to medication.  My son at that time was being transfused every 4 - 5 weeks - and he did very well with desferal at the time.  Now he is getting transfused more frequently - and his ferritin is 1800 - a few times it has gotten over 2000 - but generally it is between 1600 - 1800.  Hopefully we will get his transfusions under control so that his ferritin levels with be lower again. 

It is important to note that desferal does work - if the child is not allergic to it - and if the dose is appropriate for your child's age and ferritin levels. 

Best of luck,

Sharmin

Hi,

Just to answer your questions :-

1. I started desferal at the age of 5yrs old and I was diagnosed thal major since a few months old. Have been on desferal for more than 20 yrs (I'm 29 this yr)and only last 2 yr I change fr desferal to exjade which is a relieved to me.

2. I don't know what's my ferritin level when I started desferal. Sorry.

3. My ferritin test show that it has been roller coaster-ing and the last stop is at 5000 which is very high (I know) My doctor had increased my dosage so let's see what's gonna happen to my roller coaster ferritin level.