e-beta thalassemia intermedia

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Offline rbhowal

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e-beta thalassemia intermedia
« on: October 09, 2009, 05:33:59 AM »
My daughter Aprajita, aged 9 years is e-beta thalassemia intermedia and is undergoing transfusions from the age of six. For the past 1 year she is on hydroxyurea and still she is being transfused every 3-4 months. She is also given dietary supplements to manage her energy levels. Can anybody suggest any other supplement which may at least delay the process of transfusions.
I have son aged 1 yr 9 months who was conceived after we did a genetic analysis. The stem cells of the sibling is preserved for any possible cure in future.
I am new to this forum and would appreciate that the senior members and the existing members of the form may kindly guide me.

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Offline Narendra

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Re: e-beta thalassemia intermedia
« Reply #1 on: October 09, 2009, 02:32:56 PM »
Welcome to thalpal.

Thal Intermedia is a complex condition and usually needs to be managed by the doctor with clinical symptoms. I would urge you to read and print Chapter 18 related to Thalassemia (Intermedia) - Page 27 from the thalassemia handbook
The link is - http://www.thalassemia.com/documents/thalhandbook2008.final.pdf

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It is vital that people with thalassemia intermedia be monitored closely throughout life. Unlike thalassemia major, where the
level of anemia makes transfusion mandatory, thalassemia intermedia patients may not have hemoglobin levels low enough to warrant mandatory blood transfusion and regular care. However, progression of both the anemia and ineffective erythropoiesis may eventually result in serious complications. This important group of patients suffers immeasurably due to an unpredictable degree of anemia and course of treatment; therefore, following standards of care is of utmost importance.

Has her Ferritin level been checked? Being an intermedia, she might be absorbing more Iron in the gut from the food. It will be benificial for her to drink tea along with meal. This quote is from Page 25 of the same thal handbook
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Drinking black tea with meals is recommended to reduce iron absorption from food.

Also, read Chapter 15 (on Page 25) of the handbook. It gives important information for Nutrition. Multivitamins are recommended for thals due to hemolytic anemia.

It is good that you are taking the step to learn more about her condition and try to give her the best care. Do ask as many questions as possible and the members are always trying to help.

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Offline jade

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Re: e-beta thalassemia intermedia
« Reply #2 on: October 09, 2009, 02:36:53 PM »
Hi rbhowal

welcome.  You have come to the right place for information.  You will have help from the members here.  

For your daughter there are a series of supplements that you will find our members taking when you read through the different posts.
Please go through vitamin and mineral supplementation in thalassemia in the Diet, nutrition and supplements of the board.  you will have all the necessary supplements that should be given and what our friends are actually taking.  It may help.

Is your daughter chelating?

Take care
Jade

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Offline Zaini

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Re: e-beta thalassemia intermedia
« Reply #3 on: October 09, 2009, 03:32:57 PM »
Hello and welcome on the forum :welcome

One thing i want to suggest for you daughter is carao fruit syrup,you can read all about it in these two posts.

http://www.thalassemiapatientsandfriends.com/index.php?topic=1259.0

http://www.thalassemiapatientsandfriends.com/index.php?topic=1791.0;highlight=carao

This supplement has benefited quite a few people and it has no side effect so i think you can try it.

Zaini.
^*^Xaini^*^

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Offline Andy Battaglia

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Re: e-beta thalassemia intermedia
« Reply #4 on: October 09, 2009, 03:39:31 PM »
Hi rbhowal,

Can you tell us what dietary supplements your daughter is currently taking?
Andy

All we are saying is give thals a chance.

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Offline Manal

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Re: e-beta thalassemia intermedia
« Reply #5 on: October 10, 2009, 01:55:48 AM »
Hi rbhowal and welcome to the site :biggrin

What is your daughter  HB before transfusion and did you notice any difference after starting the hydroxurea????

Also check this link
http://www.thalassemiapatientsandfriends.com/index.php?topic=2240.15

and feel free to ask whatever you want

manal

 

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