Our Son Aaron (from China, beta thal major)

I just joined this group today.  We just returned from China last week with our new 3 year old son, who we have named Aaron.  We first saw his photo back in November (and knew he was to be our son).  We had already been waiting to adopt "healthy baby girl" for two years with another 3-4 years left to wait, and then feel so lucky to have found Aaron.
We also have a 3 year old bio. son.
We live just about 15 min from our Children's Hospital.  We are working with a phenomenal hematologist.  I think Aaron is his first beta thal major patient in quite some time (probably first time ever here in our state, but he worked with thal patients in a major city during his fellowship).
We will travel 4 hours this summer to Boston's Thal. Center for consultation and will make that a yearly trip.
Our son had his first transfusion in the U.S. yesterday, which went well. 
In China he was overtransfused every 25 days to adult levels with no access to chelation.  We just filled out the paperwork for Exjade, which we will start soon.
I'm going to have lots of questions! Nicole

 

So far, you have done all the right things. Hopefully, you are also registered with the Cooley's Anemia Foundation. The annual visit to Boston will be very important in assessing your child's health and planning a comprehensive treatment program. We have several other parents here who have also adopted from China and are so happy with their kids. One tip when starting Exjade. Start with a low dose for a week or two until his stomach has time to get used to it. We are also currently advising parents to consider splitting the dose into two and taking twice daily, as this seems to result in less stomach discomfort, and realistically gives a full 24 hour chelation.

So far, you have done all the right things. Hopefully, you are also registered with the Cooley's Anemia Foundation. The annual visit to Boston will be very important in assessing your child's health and planning a comprehensive treatment program. We have several other parents here who have also adopted from China and are so happy with their kids. One tip when starting Exjade. Start with a low dose for a week or two until his stomach has time to get used to it. We are also currently advising parents to consider splitting the dose into two and taking twice daily, as this seems to result in less stomach discomfort, and realistically gives a full 24 hour chelation.

Hi Andy,
Thanks for the welcome.  Yes, we are registered with Cooley's.  When we were considering Aaron's file, I had contacted Eileen Scott and she was wonderful.  I also had a hem. at Cooley's look at Aaron's file.  Glad to have found this group.
Nicole

Good Job Nwalsh. Something is telling me you are going to take good care of little Aaron.

Please keep visiting our site. The members are very experienced and questions are answered promptly. The key in thalassemia is knowledge. Please keep yourself updated with advancement in treatments.

Good Luck.

One tip when starting Exjade. Start with a low dose for a week or two until his stomach has time to get used to it. We are also currently advising parents to consider splitting the dose into two and taking twice daily, as this seems to result in less stomach discomfort, and realistically gives a full 24 hour chelation.

Andy, so, the Exjade tablet may be cut in half with a pill splitter?
Thanks,
Nicole

Yes, the pills can be cut in half, but you may also be able to get low dose tabs so you don't have to split them. These are the dose tabs available in the US from Novartis. Tablets for oral suspension: 125 mg, 250 mg, 500 mg.

Welcome!!! The more you read here the more you'll learn. There's tons of invaluable information and support.

Welcome on board from this forum. You will learn here lots and I am ready for new discussions!

Welcome! I'm so glad you were the one who adopted him. He sure is lucky, that's for sure...... I wish plenty of people are like you.....I agree with all of them knowledge is power..... again don't hesitate to ask anything.......