Third baby

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Third baby
« on: May 03, 2013, 12:56:47 AM »
Hi.. We live in the US & have 3 children. I've known I have minor & my husband didn't know he had till 6 mnths back. We just found out my older 2 have minor. When my baby was 2 mnths we found out he has major. He is 8 mnths now.
We have been going to Miami for medical help. He has had 4 transfusions. The hematologist here only transfuses him when his count is around 7.5. He suggests not to transfuse sooner because my baby is too young to take the meds for the iron. Is the the norm?
Am very confused & have many questions, but this has been working on my mind a lot.

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Offline Andy Battaglia

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  • Will thal rule you or will you rule thal?
Re: Third baby
« Reply #1 on: May 03, 2013, 02:09:29 PM »
Hi Pooja,

The advice from your doctor is outdated. According to the Standrads of Care Guidelines for Thalassemia,
Quote
4.3.3 Target hemoglobin and frequency of transfusions
The goal of transfusion is to shut off erythropoiesis as much as
possible. Transfusions should generally be given at an interval of
three to four weeks. (With aging patients, a transfusion every two
weeks may be necessary.) Transfusions should be scheduled in
advance and maintained at a fixed schedule. This enables patients
and families to establish routines and will improve quality of life.
The amount of blood received on transfusion day is determined
by pre-transfusion hemoglobin levels. The target is to maintain
the pre-transfusion hemoglobin level between 9 and 10 g/dL.

Attempts to maintain pre-transfusion hemoglobin at above 10 g/
dL increase transfusion requirements and the rate of iron loading.
Transfusions should be given in an outpatient setting with an
experienced transfusion team that uses proper safety precautions
(patient/blood identification bracelets). Blood should be transfused
at 5 mL/kg per hour, and the post-transfusion hemoglobin should
not exceed 14 g/dL.

I recommend that all patients in the US register with CAF. Please contact Eileen at CAF and ask about a referral to a Thal Center of Excellence. All patients should be evaluated at one of the Centers annually, and the Center will design a program for each individual. The Centers can help to advise your local center where the child is treated.
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
Andy

All we are saying is give thals a chance.

Re: Third baby
« Reply #2 on: May 03, 2013, 02:40:32 PM »
Thank you. Will get in touch with her. 

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Offline Cari

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Re: Third baby
« Reply #3 on: May 25, 2013, 03:57:43 AM »
Hi pooja,

Definitely a good idea to keep your little ones hg above 9 right now.  I have two young boys and both started transfusions at 3 & 2 months. The youngest never got before 8.5.  we live in Florida as well and we have a specialist in Atlanta. Pls feel free to contact me and I can try to help u with more info. This forum is wonderful and u will get a lot of critical info here.

 

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