Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: Bostonian_04 on March 03, 2012, 08:15:12 PM
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This is the 1st time we are taking our child for comprehensive checkup in Oakland, CA . AFter setting up the visit, we came to know that hospital can arrange air tickets for us. They get donated tickets from their sponsors. So, I am posting this to let you know if you can manage hotel and car expense in Oakland, then oakland children's can help you buy the air ticket. I will think it is only for US patients. But if you are not in US, you can call and find out. and please post it if you find out otherwise.
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I'm curious if your child is treated at Boston's Thalassemia Center (Children's Hospital) and you are being referred to Oakland, or why you are choosing to go there vs. Boston. Just curious.
Nicole
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Bostonian,
Wishing you luck for your visit.
Sharmin
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Thank you Sharmin. We had a good visit. Few things that we learned from Oakland that I will liek to share are ....
1. never stop chelation completely. even when ferritin is lower than 500 (in our case with a growing 5 yr old) keep taking a low dose of exjade so as to bind the free iron.
2. By 5 yrs age, we should start a Ca supplement.
3. Any good multi-vit without Iron should be taken by all Thals
4. VitC is not necessary for thals who are chelating with Exjade.
5. Try to keep Pre HgB between 9.5 and 10.5 and adjust Tx interval accordingly.
6. Roughly the Tx ampunt should be 15ml/Kg for HgB above 9 and 20ml/Kg below 9.0 HgB.
Can't think if anythign else immediately.
Nicole, we moved closer to Oakland so we are going to Oakland.
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Bostonian,
Which doctor would you recommend in Oakland? I live in NY but am considering visiting Oakland for a comprehensive checkup. I haven't gone to Cornell but I hear Oakland is one of the best if not THE best Thalassemia Center of Excellence. Any recommendations from anyone regarding Cornell? Any specific doctor who is the best/most knowledgeable? Thanks!
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Dr Vichinsky at Oakland is one of the top thalassemia doctors and researchers on earth. He is the head of Oakland Children's thal center, but you can be assured that his entire staff are experts. At Cornell, Dr Patricia Giardina heads up the unit.
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As Andy has said, Dr. Vichinsky is likely one of the best thalassemia doctors in the world - it would be a great idea to be assessed by him initially. His entire team is extremely knowledgeable, caring and down to earth. Dr. Lal and Dr. Singer are the other doctors that work with Dr. Vichinsky.
It is possible to have a comprehensive appointment in Oakland including endocrinology, psych, gastro etc.
We have found this to be very helpful.
Sharmin
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CrazyPharm,
if you live in NY, then Boston is closer to you...we have been seen by Children's hospital of Boston when we lived in Boston and we highly regard Dr. Neufeld. so, you can also try going there. Jen Braunstein is the RN there and is very good. If you contact her, she can also help you to set up Comprehensive check up there. Both Oakland and Boston is great for comprehensive check up.
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You're doing well at either one, Boston or Oakland.