Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: ANI on May 31, 2010, 11:01:13 AM
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Dear All
Can someone educate me about the minimum duration required between 2 units of blood. In India ( specially in my city) doctors use one unit today and ask us to stay back for the night and give another the next day. It is very tiring for my 4 year old kid. Normally we use packed cell of 200 ml.
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Hi ANI
Do you mean to say your son gets two bags of 200ml each. How much does your son weigh?Normally if the pre tx hb is very low the doctors may ask to stay overnight to administer another bag. Blood volume must not exceed 20ml/kg. My 4 year old gets between 200ml-250ml and is spread over 4 hours.
maha
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Thabnks Maha for your reply. Actually he weighs 16 kg and in India the packed cell volume is sometime between 160-180 ml. Not al;ways but many times we have been asked to take 2 bags at 7 hb level. We are trying to maintain pre transfusion level at 8 but sometime after 23 -24 days it goes down below 8 also. That time only 2 unit is administered.
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Yes Ani, if a little child needs to get 2 units the second unit is given after a gap of 12 hours usually, so as to not burden the heart. A pre tx hb of 8 inspite of transfusing every 24 days is low. Does he have any antibody issue? Are you giving your son vitamin E. If not start him on 100 IU of natural vitamin E daily.When I started vit E and L-carnitine my son`s pre tx hb went up from 8 to 10. Both are available in GNC stores.
take care
maha
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We never checkd this antibody thing. How this can be checked. Docs here are not knowledgeable. Pl let me know. is it done in India.
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A coombs test will show the presence of an antibody and this test is routinely performed prior to transfusion. You don`t have to ask for the test. So antibodies might not be a issue in your son`s case if you have not been informed about it. Do you use a filter during transfusions? The quality of blood transfused is also a relevant factor. Do you give your son any supplements? Even my doctor is not an expert on thal. I learn from this site and discuss it with my doctor. Keep reading and do tell us more about your son.
maha
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My daughter is 7 and her limit is 500ml. Depending on what her numbers were before hand determines how much she will receive but she cannot go over the 500 ml unit. We normally go every 3 weeks for transfusion so that when they transfuse again her number will be at 9. Depending on whether or not she was ill. She has gone down to 7 when she gets sick with some viral thing. So there are times when she needs 2 bags. The doctors don't like to use 2 if they can help it because it opens her to too many antibodies. A 2 bag day we are at the hospital for almost 9 hours.
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Adult thals do get 2 bags at a time,so i am guessing this duration problem is for kids right?
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An average adult usually gets 2 bags at a time, but if they had to get 4-5 bags then you have to space it a few hours apart. Last year my aunts hb had dropped to 4.5gm/dl (she was having menopause problems). She was given 2 bags of 400ml once and another 2 bags after 12 hours to raise her hb to 12.
maha
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No duration here- Bulgaria, one bag ends and comes next one. :wink
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Thanks All , for your advise and suggestions. We had taken Ani to hospital on 5th and given him 1 bag of 170 ml and on 6th morning yet another bag od 170 ml ( thats normal size over here). Now he looks red and very energetic. I have discussed with my Doctrs regarding the Vitamin E supplements and L acrnitine. Vitamin E , he said OK to start but he did not have any idea on L carnitine and whether it should be given to thal patient. I think , I need to visit some higher centre in india for this.
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Hi ANI
You can print these papers and show them to your doctor concerning the usage of L- carnitine in thal patients
Improvement of Cardiac Function in Thalassemia major Treated with L-Carnitine
http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ArtikelNr=76522&Ausgabe=229926&ProduktNr=223829
Assessment of Puberty in Relation to L-carnitine and Hormonal Replacement Therapy in {beta}-thalassemic Patients. http://lib.bioinfo.pl/auth:El%20Beshlawy,A
Apoptosis in Thalassemia major Reduced by a Butyrate Derivative
http://content.karger.com/ProdukteDB/produkte.asp?Doi=87890
Diastolic Dysfunction and Pulmonary Hypertension in Sickle Cell Anemia: Is There a Role for L-Carnitine Treatment?http://content.karger.com/ProdukteDB/produkte.asp?Doi=89472
Pulmonary hypertension in beta-thalassemia major and the role of L-carnitine therapy.
http://www.ncbi.nlm.nih.gov/pubmed/19065439?dopt=Abstract
manal
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Thanks Manal , I will discuss with my Doc.
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Dear Maha and Manal
After 28 days when we took my son to hospital , his pre Trx Hb was 10.2. I could not believe this. Only thing we did it that lat time we gave him 2 bags of 180 ml each and was on Vitamn E , as advised by you. It feels so good. This time we gave him 1 bag of 175 ml. Hope he sustains it to next 28 days. Bye
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Hi ANI
I am glad your son`s` pre tx hb has improved. Now you should try and maintain it at that level. Since 175ml is less than your son`s actual blood requirement (actual would be 240ml appx) he may not be able to maintain the hb for 4 weeks. If you are comfortable with one bag at a time, I feel you should recheck his hb at 3 weeks and plan transfusion accordingly.
take care
maha
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Hi ANI
I am so happy for you. One of my friends had her transfuson after 7 weeks when she took fresh blood, so try to always ask for fresh blood (if possible)
manal
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Hi Ani,
Can you tell me what kind of vitamin E are you using. Is it availabe with chemist please provide me the name and the dose.
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I am using Evion drops and giving 2-3 ml every day. My Docs here doe not understand much and I only hope it is right.
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thnks ANI