Discussion Forums > Thalassemia Major

Some General Questions

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EMommy:
Hi Friends:

I have a couple of different questions that have been on my mind.

1.  I am trying to give our daughter (18 months) a diverse, low iron diet and I feel like I have so very few options.  She basically eats a few foods as I am always reading the labels to find the least iron content foods to feed her.  She eats:
cottage cheese, carrots, yogurt, sweet potatoes (baby food), crackers, baby snacks, pudding, mandarin oranges, grapes, bananas and maybe a few other things.  The problem is that the more I read about foods, the more I think I should limit many of these foods because some of them contain some iron.  I bought shrimp and rice that was labeled 0 iron, but then I read on the internet that these foods do contain iron.  So, I wonder are the labels even correct?   Should I see about getting her a nutritionist even though they probably would not understand Thalassemia?  Would it be yet another person that I would have to educate while still educating myself about this disease?

2.  Is it normal for her ferritin to go up 150 points in 2 weeks?
She was getting transfused every 3 weeks, but her hgb was only at 9.2 (average) 3 times in a row.  So, now we are doing them every 2 weeks, but already her iron increased from 347 to 506.  Now, I am worried because I did not want to start her on chelation until she is 2 years old so that we can just use Exjade.  How often are most Thal kids getting transfused? 

3.  Is she getting enough blood?  The doctors are giving her 70-75 ml of blood (packed red cells) based on her weight (almost 18 pounds).  I feel that if they could give her a little more blood, then she could decrease transfusion frequency.  But, would that help her ferritin or is it better to get less blood more frequently?  How much blood are most Thal kids receiving?  In China she had received 200ml and our doctor told us that this can cause a stroke. 

We are so fortunate to live in this day and have so much information available.  If anyone has answers to even part of my questions, please reply.  Any ideas for safe foods that I can introduce into our daughter's diet?  It seems like there is so much that she can NOT eat.  I just want to say that I love this group and feel so blessed to be a part of it.  I have encouraged all of my other Thal friends through adoption to join the group as well.

Thanks.

PS  I posted a picture of our sweetie with her protective big brothers. 

§ãJ¡Ð ساجد:
Hi,

You can give her a little of everything occasionally, even if it contains some iron, but don't make a habit of it :biggrin

The ferritin increase can be variable. If the HB is low then the iron absorption from food can increase. The amount of blood transfused is one of the major factors. More blood means more iron.

Similarly, the frequency of Tx can vary too. If she is having some infection or fever, that could destroy RBCs too. Plus the health of the donor's blood also varies each time. Some Tx last better than other. It is always better to get a blood that has been donated recently rather than the one which has been sitting in the fridge for a while.

Don't worry much about the iron in the food as it is nothing compared to the iron that comes with the blood. You can give her something new (even if it has a little bit of iron) just for a temporary change.

I love their picture!! They are so beautiful and look great :wub

Kathy11:
Congratulation Emmomy.
Your children looks great ,they are beautifulll and full of life.you must be very proud.thank-you for sharing their pic with us all.
I hope one of the mum whom has a child with thal major will share with you on what  kind and how much to feed your daughter, at the sametime, I think you are doing great because she appears to be growing well.
Kathy

sydneygirl:
Hi Emommy,
Its sounds like your being a great mom trying to do everything right and all thats possible
for your beautifull daughter.I know we should steer clear of spinach as its quite high in
iron and Beetroot as thats also quite high with iron.take care & sorry i couldnt be more
help perhaps some others on the site or andy can shed some more light for you.
Best wishes! :hugfriend

Manal:
Hi Emommy

I love the pictures, may God bless them

I am not an expert in diet with thal major, but i have a point that you may correct me at. I think that you shouldn't deprive her from most of the food especially that as a baby she needs to grow.  You can avoid food that is really full of iron like spinach, liver,...  and concerning the other food,  plain green tea or tea with milk can be given to her to inhibit iron absorption

Manal

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