Some General Questions

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. 

Hi,

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

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

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

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!

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

Hello Rebecca,

Your kids are gorgeous  ,lots of hugs and kisses for them,

ZAINI.

You can give her everything without the fear of its iron contents, however, do not make it regular. Foods that contain iron have other essential nutrients that are helpful for her growth. Try to make it a balance diet as it is for any other child. "Excess of everything is bad though", use your judgement or consult a nutritionist , if you are in doubt.

Ferritin can vary greatly due to several factors and is not a 100% reliable measure of iron in the body, it does give you an indication/approximation at point in time. Don't be too much alarmed about it at this point. Follow the advise of your doctor.

More blood means more stress on her heart, the 70-75 ml seems just right for her age. More blood could give her a longer transfusion time but comes with risk of stress on her heart and as per doctor the risk of stroke.

Not two transfusions are equal, if the packed red blood has greater percentage of young cells (i.e. the age of the cell is young or it is produced recently) then the transfusion will last longer. I don't think freshly donated blood or stored pack would make an impact on the quality of blood.

Scientists have recently suceeded in inventing a technique (I dont' recall the name of the technique) which separates the young red blood cells from the donated blood. Its a costly procedure and not available widely.

Keep asking questions.

Thank you.

We have a solution to the blood quality in December.  We can directly donate our own blood to our daughter, but the blood center will not allow us to do this until we have been home from China for one year.  It is an FDA regulation that really does not make too much sense since she lived in China for 9.5 months.  Neverthless, we can and will donate directly to her as soon as December comes.

Her daddy and I both have the same exact blood type as her and so far she does not have any antibodies and tolerates blood types well.  I can't wait to start giving her our blood because I will donate a few days before and know that it is very "young blood".  Of course, they only allow us to donate so much, so I am not sure if she will always get our blood, but at least some of the time she will.   We can only donate every 6 weeks according to law.  If we both donate at different intervals, then she will usually get our blood.  Has anyone else done direct donation?

How high can her ferritin get before I should be concerned and start some type of chelation?  I really want to keep it low. 

She is such a blessing to us, the very best thing that has ever happened to our family!

People who have selected blood donors are usually more secure from blood transfusions diseases, however, that does not mean others are less secure. The blood safety regimen is highly important issue for all countries and it is controlled very strictly. The only problem though is a new type of blood virus which is unknown and cannot be detected using normal blood screening can be transmitted to thal patients.

Example being Hepatitis B virus scandal in 80's which led to several lawsuits. However, people with selected donor list can reduce the chances of such happening greatly.

Good Luck

Hi,

According to some Thal. centers in Pakistan, it is not advisable to donate again before 3 months as Thals. require the best quality of blood and it is quite possible that Hb of the donor has not completely recovered. Every center/hospital has it's own standards. Like when I went to Holy Family they didn't care about the blood age and said that it doesn't make a difference, but now at JSF they say that the sooner the blood gets Transfused the better as the cells start to die off when they get out of the body and they tend to transfuse the blood as soon as possible with the least time kept in the store.

Normally the chelation therapy starts at 1000 ng. Better ask your doctor about the time and mode of chelation (Desferal/Exjade).

Hi Rebecca,

You can avoid high iron foods somewhat but you shouldn't try to avoid all iron foods as it is impossible and as Canadian Family mentioned, you will be missing out on other necessary nutrition. You may want to limit the amount of foods with very high heme iron such as red meat, and altogether avoid foods like liver, but you shouldn't worry too much about most foods in general. A healthy diet is essential and the lower iron meats and seafoods are acceptable along with most non-animal products.

Ferritin readings can vary greatly for different readings and differences from one checkup to the next shouldn't be alarming. A simple case of the sniffles is an example of something that can throw off the readings as your body adjusts ferritin levels for reasons other than iron overload. Most children don't chelate before age two and the iron buildup at this age hasn't been going on long enough to cause any significant damage to the child.

You kids are adorable.     I so hope the adoption goes through for the other girl. It would be so good for the child to be adopted by such a caring family.

Thanks Andy!
I will definitely let you know when we receive a response.  We are on pins and needles, waiting....
Did I read a post correctly that you have 5 children of your own?  That is great!
Also, thanks for the info.  I just worry so much about our beautiful baby girl.   

Yeah, 2 girls and 3 boys. And that is why Khalifa (also has 5 kids) and I are usually found like this... 

Andy ,
I think you are blessed with all your children.



Guys   I like this emotico

I burst out laughing evertime i look at it.
kathy

Hey Kathy,

I love this emoticon too,

Some times i feel like it's a picture of myself  lolup

ZAINI.