New from Oklahoma, USA

My son has Beta Thalassemia Major. He's 6 years old and his ferritin is through the roof. 5000-6000. Our Drs order transfusions and that's about it. He does take 750mg of Exjade (18.2kg) and the Drs have been talking for months about Desferal too since his level isn't dropping. But they can't seem to decide. Thal is almost unheard of in Oklahoma. I've been reading the forum and we are now going to start splitting his dose. I'm checking on the other chelation ideas like green tea and wheat grass. Maybe we can go to Oakland for an assessment.

Jennifer

Hi Thal mom,

You've landed at the right time on thalpal!

You're correct, his ferritin is way higher when he's only 6 years old. When did you adopted him? I'm curious and asking this because I wanted to know if he has been adopted in recent years and before that he was only getting transfusion but might not be getting chelation.

Not to worry. You still have plenty of time in your hands to change the things upside down!

Split dose is something which is developed here at by the members of Thalpal and pioneered by Mr Andy and we are very thankful to all the members and to Andy, as well. My ferritin didn't used to drop as well (mind well that I used to use Exjade since 4 years) but I did not see any drop. Thereafter, one fine day on 27th/28th April 2012, I landed back to thalpal and read about split dosage. I started this therapy the same day and I'm seeing now constant decrease in my ferritin. That's when I became active on thalpal and would tend to be from now on.

Also with splitting dose, one important thing I found is that do not use metal spoon or metal glass to mix or stir exjade, use plastic spoon and any but not metal glass as exjade tends to react with metal and thereby it's effect is greatly neutralized. This is one big point as well!

You've landed here on correct time for correct advise. If you follow the regimen, your son's iron would be below 1000 in 1-2 years and he will have normal growth just like any other child and will have normal hormonal function most likely. It is also advisable to do fasting blood glucose test once in an year as high iron overload can cause diabetes (like me).

You're already doing great job now that you've got on the right place and will be adopting right methodology.

I can also seen that your son is on max exjade dose (40mg/kg) which is good but make sure he's hydrated throughout the day. Supply him with plenty of water and fluids and teach him to drink water every now and then when at school. Cultivating practice from now will make it easy and will ensure normal function of kidneys and liver.

-P.

We adopted our son 1 1/2 years ago. He most likely wasn't on any chelation in China. So his level was very high when he got home. First one was 8000. He's been on the maximum Exjade for 12 months now and the high number still worries me. We are considering adding Desferal.

We do use a glass cup and plastic spoon but I think we could encourage more drinking. Thanks

Jennifer

Also give him natural antioxidants and chelators like IP6 and green tea extract. They are also very good for cleansing out iron from various body organs.

Don't worry, splitting dose shall give optimum results. You might not want to add desferal now (desferal and kelfar is supreme but it is little painful, and kelfar may hurt his joints but that shouldn't stop you!). Just give Asunra proper try with split dose, I'm sure it will work wonders.

Although, as I said, I was just giving my views on Kelfar + desferal, they're very good if adjusted.

-P.

Hi Jennifer,

As Pratik mentioned, you should try the split dose. We have seen positive results from the many who have tried this method. It provides a true 24 hour chelation period. The other thing you need to know is that in cases where the iron load is quite high, it can take some time, well over one year, before progress is seen in ferritin reports, because Exjade will remove the iron from tissue and organs first. Once this is under control, a constant reduction in ferritin is seen.

All thal majors in the US should be seen at a Center of Excellence at least annually. I feel this is absolutely essential. You should also register with CAF. Contact Eileen. She can also help direct you to thal familiar hematologists if any are available in your area.

Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222
Fax: 212-279-5999

Patient Services Manager
Eileen Scott
eileen.s@cooleysanemia.org

I would not suggest adding desferal until the child has had heart and liver scans to determine actual iron loading. Even if iron is high, Exjade may be all that's needed. Again, the Centers of Excellence will do these scans as part of their comprehensive routine (which is adding years, if not decades to the lives of thals).

Hi Jennifer
I think you went to Atlanta or Texas for the Ferriscan and a consultation at the thal center there, right?
If so, did the dr. have suggestions for chelation, if the ferritin had not dropped in a year or two? If so, can he/she give a protocol for your local doctors in Oklahoma to follow?
Thinking of you!
Nicole

Welcome to the forum!!!

You've reached the best place to talk about everything you need.

Lots of kisses,

Laura.

Hi Jennifer
I think you went to Atlanta or Texas for the Ferriscan and a consultation at the thal center there, right?
If so, did the dr. have suggestions for chelation, if the ferritin had not dropped in a year or two? If so, can he/she give a protocol for your local doctors in Oklahoma to follow?
Thinking of you!
Nicole

The Dr in Dallas just did the ferriscan. I don't think he was a hematologist. We didn't see anyone else. Dallas isn't one of the main centers. So no recommendations. I'm hoping for some answers at our next visit.

The Dr in Dallas just did the ferriscan. I don't think he was a hematologist. We didn't see anyone else. Dallas isn't one of the main centers. So no recommendations. I'm hoping for some answers at our next visit.

What are ferriscan results?