what should i do?

sorry andy i dont know if i should be posting under announcements for this...
 after reading what you guys wrote,i am concerned now about giving her the regular formula. i do, however have a md appointment with a THIRD hematologist on thursday at phoenix childrens hospital.
can i wait until then to ask his opinion? should i go and buy the low iron type now or can i use what i have left? will it harm Laurynin the mean time???

thanks for your advice,
christine

HI Christine,

I think you may need a prescription for low iron formula in the US. I wouldn't say at this point that iron will harm Lauryn, although at this age it isn't really needed. The problem with iron is that it will add to the overall iron levels and when transfusions to begin, it will mean an even earier start to chelation, which is best put off as logn as possible.

The only references I can find online about iron in infants with thalassemia is that normally low iron formula is prescribed. I can't find a single reference that says that thal babies should take iron fortified formula. If a doctor tells you to give high iron formula, ask why it's necessary during the first few months, especially considering it will add to iron problems later on when transfusion begins.

How have her hemoglobin readings been? She is growing well, which is a very good sign.

hi andy! thanks for getting back to me soooo quick!
the last time we were at the dr. (beginning of sept) her hemoglobin was 13.3. is that good? we havent had it checked since. this thursday i believe they will check it again.
her pedi. said iron is important for her brain and eye development.
there is a low iron formula over the counter here in az by enfamil.
as i mentioned in another post i cannot breastfeed b/c of certain meds i am on, AND my milk did not completely come in regardless. i was informed by CAF that even if i did breastfeed Lauryn would get iron from my breastmilk.A fair amount (?)
My husband and I are very confused but most of all concerned. it is so sad that i have to doubt her hemotologists!!! I cannot WAIT to go to phoenix childrens!
can i wait to change her formula at least until thursday in your opinion? Dangit Andy! You should be Lauryns doctor!

 
christine

It's really no rush to change the formula. Breast milk is not high in iron but is a very efficient transport of iron, thusly providing all the iron needs of a baby in the first 6 months at the least and normally much longer. We never gave any iron fortified foods to our 5 breast fed children, and they all thrived.

There may be one danger with adding iron to a thal baby's diet. It is very well known that iron feeds bacteria and infection can be a real problem in thal babies in their first few months. Excess iron can feed these infections and make them even worse.

By the way, hemoglobin of 13 is absolutely a normal reading and is exellent news. 

Hi Christine,

HB of 13 is pretty good! I have a feeling your baby is going to be o.k. This means she can have the iron-free formula safely and there is no risk of iron deficiency if she is making her own blood and maintains the HB. Keep that HB in check and hopefully it will never drop

Take care, Peace!

Hi Chrissy,

Hb of 13.3 is like WOW! Excellent. My prayers that it always stays the same for little Lauryn  :hug

Regards,

Namitha