What would Oakland assess?

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What would Oakland assess?
« on: March 11, 2013, 07:08:00 AM »
My 6 year old son has a very high ferritin 5000-6000. Our Drs have mentioned us going to Oakland and they have mentioned adding Desferal to his Exjade. My son was adopted a year ago and we just get some basic bloodwork, transfusions and Exjade now. What might we expect if I could find a way to get to Oakland? Would someone there show us how to use Desferal? I was reading something about vitamin check? Seriously his vision and hearing were checked at his pediatrician's office. Not by specialists. What all might they check? How long has anyone had to stay there? Do any airlines offer discounted tickets? Oakland is a long way from Oklahoma.

Jennifer

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Offline Cari

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Re: What would Oakland assess?
« Reply #1 on: March 11, 2013, 06:19:25 PM »
Hello - I would contact them. They will be able to guide you in the right direction and to the nearest thal center for immediate consultation.   I recently spoke with someone there and they were very helpful.

Re: What would Oakland assess?
« Reply #2 on: March 11, 2013, 07:32:15 PM »
I've tried and left voice mail. Hopefully someone will return my call.

Jennifer

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Offline Andy Battaglia

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Re: What would Oakland assess?
« Reply #3 on: March 11, 2013, 11:28:21 PM »
It might be helpful to contact Eileen at CAF.
800 522 7222 ext. 205
Andy

All we are saying is give thals a chance.

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Offline bomboi

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Re: What would Oakland assess?
« Reply #4 on: December 03, 2014, 09:22:28 PM »
Hello Thal mom ,

I am currently going to Oakland for treatment . It is well worth it to make that travel to be seen and get a full check up . CHO is well trained and they know what to do and can answer all your questions . You don't need to stay long , just a couple days is good enough to get a baseline on what your son needs.

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Offline Andy Battaglia

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Re: What would Oakland assess?
« Reply #5 on: December 03, 2014, 09:32:00 PM »
I totally agree, bomboi. It would be hard to find a better thal center.

Were you a member of our old MSN group?
Andy

All we are saying is give thals a chance.

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Offline bomboi

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Re: What would Oakland assess?
« Reply #6 on: December 04, 2014, 03:37:11 AM »
Andy ,

Unfortunately No i wasn't . Wish i did now though . Hope to spread my knowledge and lend a helping hand.

Children's Hospital has been great to me so far since my transfer from UCSF.
« Last Edit: December 04, 2014, 03:46:09 AM by bomboi »

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Offline Bostonian_04

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Re: What would Oakland assess?
« Reply #7 on: December 08, 2014, 09:44:55 PM »
Hello Thal-Mom,

as everyone else said, a visit to Oakland is well worth the effort as they do comprehensive check up and also helps to follow-up with things with your local Hemo if needed. I think you can get airline ticket vouchers and possible hotel stay help. We have availed help with airline ticket in the past. But the number of tickets available is very limited so we have not been successful to get it for every visit. You should contact Raquel Manzo at RManzo@mail.cho.org to set up appointment.
Quis custodiet ipsos custodes ? - Plato

 

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