In need for information

Dear members
My name is Manal and i am from Egypt. I am a mother of a 4 years old child who was diagnoised from two weeks to have thalassemia intermedia. It was by coincidence when we made him a full blood picture. We found his HB to be 6.4 , his MCV 55, his A2 HB was 6.9% and his F HB was 11.5%. His ferritin level is 71 , his spleen is a little bit enlarged( the standard deviation in his age is 8.6 and my son is 11), his heart beats very fast but is completly normal . My son is a very very active child, sometimes he is pale and sometimes his urine is dark yellow. The doctor postponed blood transfusion ( as she said he is very active) and she gave him L-Carnitine drops, multivitamin without iron and Vitamin C, folic acid and calcium with Vitamin D and B12. She said that after one month we will make another blood analysis. At the same time my husband, my daughter and me are doing the HLA test to see the probability of transplant. Dear members to you know anything in food that can make the HB level better other than wheat grass. I want to help him to increase his HB without transfusions and at the same time i am very much afraid from bone deformations.
I have another question which is that i am afraid that my son will not take all his essential nutrients because i started to stop giving him all the food enriched with iron and at the same time give him tea, so does this affect his growth and his in take of minerals and vitamins needed for him to grow.
Also is ice tea is the same as the hot tea and what if we added milk , does it lose its ability to prevent iron absorption?
Sorry for too much questions, but we were a very peaceful family, the biggest disease we had was common cold and suddenly i was faced with thalassaemia. I am so shocked , confused and depressed.

Thanks in advance
Manal
 

Hi manal,
             Welcome to the site! You should not be much worried about iron intake from diet until he starts on Transfusion or his Serum Ferritin goes really high. Give him a nice balanced diet.

             Since you won't go on Hydroxyurea as you said in another forum, then it is best to see what the doctors recommend in his next appointment. Maybe they will suggest splenectomy if it is malfunctioning and see if his HB increases after that. If all else won't resolve it, then Transfusions would be the best option for you as without it, it might effect his proper growth very much.

            Hope that your son gets well really soon. Take care!

Hi Manal,

Welcome to the group!   

Since your son was diagnosed with Intermedia, you may be able to try some Folic Acid, since he is making some of his own hemoglobin.  Folic Acid is a vitamin that your body needs to produce new red blood cells, and it's been known to help some people with Thalassemia.  People with Thalassemia (any form) usually use up this stored vitamin quickly, since the cells are destroyed faster than normal.  So, it's often recommended to replace it with daily supplementation.  I would advise you to ask your son's doctor first, though.

I'm sorry for your depression.  Please know that we are all here for you, and we know what you are going through in some way, shape, or form.  There are dozens of members here with Thal, and many parents and friends, who can also give you helpful info.  Also, the treatments that are offered for Thal today can provide a long life for your son, as long as you seek the best informed doctors, and take their advice.  If something doesn't feel right, then seek another doctor.  That's the best advice that I can give you.  Go with your gut feeling as a parent.  The parent always knows best.   :hug

Thanks a lot Sajid. Thanks a lot Danielle. 

You can't imagine how your words and advice meant to me and to my family. Thanks God that i found this site and friends who are very supportive like you.
Thanks

Manal

Thank YOU for the kind words.

We why we are here! To help each other out.

Take care! Peace.