hi everybody

Hello,

My name is Marie-claire and i'm a mother for 3 children. My first son is thal minor, my second son is thal major and my little girl WAS thal major but now is doing great ,ThankGod, after a successfull BMT. I would like to share my experience with you and try to find a way to save Christopher.

By the way, this site is really great...

MC

Welcome to thalpal,

It is nice to hear that your daughter was treated successfully with BMT. Do share the BMT success story with us. There is a lot of information on this site that can help you with managing Christopher's health.

Hi mc_diab,

Welcome to Thalpal! And glad to hear that BMT of your daughter was successful. May God bless you and your family.

-P.

Thanks Narendra and Pratik for yor welcome wishes,

I have a big concern about my son's health especially his ferritine. It's 2004 and he's on Exjade since he was 2 years old. He's almost 5 and the dosage is 750 mg but i think that Exjade is not that effective...what do you think??   

What's his weight?

His weight is 21 Kg

The dosage is correct. How long has he been on this dose? What is his ferritin level?

Hi Andy,

His ferritine level is 2004 and he's been on Exjade since he was 2 years old. He's almost 5 now and i'm very concerned about his ferritine. Some patients told me that Exjade needs some time to start giving some good results but it's been almost 3 years...Does it take that much time?? i don't know!!!

Does anyone knows anything new about Gene Therapy?? Hope that one day this procedure will be as simple as BMT is now...

Exjade is working. His ferritin would be much higher if it wasn't. The dose is also correct. If you are not already splitting the dose into two and taking twice daily, I would suggest that adjustment, as it does give a better chelation effect because it assures true 24 hour chelation.

Gene therapy trials in the US are now recruiting patients. You can read more at http://www.thalassemiapatientsandfriends.com/index.php/topic,4545.msg43930.html#msg43930

Thanks Andy for your reply,

You think if i split the dose and give him half in the morning and half in the evening it will give better results?? But the doctors were very clear about how we should take the medicine. Absolutly no food before and we have to wait minimum 30 mins before eating...

What do you think?

Dose splitting has been pioneered by members of thalpal. The results have been all positive. Ferritin drops at an increased rate. Why? Exjade has a half life of 8 to 16 hours, so it cannot possibly give the 24 hour chelation that it claims. However, splitting the dose does guarantee a true 24 hour chelation period. Recently, we have found that more doctors are advising this method. I would do it regardless of whether the doctor is on board yet or not. What is important is your child and this will help. The new rules about Exjade also allow for it to be mixed with a variety of soft foods in addition to liquids. What is most important is 100% compliance with chelation, so whatever it takes is what is needed.

mc_diab,

Welcome to thalpal, I am glad that your daughter is doing well after bmt and I hope that gene therapy will cure thal some day soon.

My 14 year old son has thal major.  He uses exjade and his ferritin levels vary between 300 and 600.  Much of the success we have experienced has been due to splitting his dose.  The Children's Hospital in Oakland, possibly the best thalassemia center in the world suggested that we split his dose and we find doing so has decreased his iron levels significantly while reducing any side effects such as stomach ache. 

We wish you the best and look forward to hearing about your daughter's bmt experience.

Sharmin

Dear Sharmin,

Thanks for your reply and i'm glad that your son is doing well...I didn't know that splitting the dose can do so much effect. I will absolutly try it and hope that it will work with Christopher.

When we first knew about my son's disease, we were transfered to Chronic Care Center where they take care of patients with Thalassemia. We met there a dietetician who suggested to follow some diet poor in iron... Well do you think that this is necessary...Because that was really hard to explain to him why he shouldn't eat all that food especially burgers and hotdogs... That's why now i stopped following that diet.

What do you think? What kind of food is your son eating?

Thanks

Dear Andy,

I'm really glad that i met you and thank you for all these details that i didn't know about.

God bless you all