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View Full Version : 2 year old neice with unknown cause of anemia


christinavalent
08-12-2006, 09:51 AM
Hi, this a long story but i will try my best to make it short.
my neice, now 2 and 1/2 fell very ill this past january (just short of her 2nd birthday). prior to that she had been suffering from a virus that made it difficult for her to enjoy what we thought would be her first real christmas. come january, her blood level had all of a sudden dropped to a 3.
we rushed her to the ER, she had numerous tests, including a scope into her stomach to check for internat bleeding. everything came back OK.
dr.'s were baffled. they knew one thing for sure that she was anemic, they just couldn't figure out why.
her eyes had been very puffy come this point and one dr. told us it was a sign her hemoglobbin was too low and suggested her heart was being strained to work correctly.
in the meantime, they discovered a heart murmer that wasnm't there previously.
that night she remained in the hosptial and underwent 2 blood transfusions. what a nightmare. they worked well and her level rose to 12.
one dr. had a hunch that considering her age and milk intake, it could have been brought on by an allergy to milk and directed us to feed her rice milk in the duration of testing. no other milk products were allowed either.
after stocking up on health foods, and things not even including soy or wheat in the contents and feeding her liquid iron every night, the baby still wasn't getting better. in come the specialists, some allergists and hemotologists, more tests... all pointing to an allergy. yet nothing we wre instructed to do, worked.
:rolleyes: since then we've kept her on her diet, andher level has remained at 12 until just recently it dropped to 11.
her eyes swell up here and there and get us very very worried.
the allergist has since run allergy tests and concluded it may not be the milk allergy everyone assumed....
the dr.'s we work with are now at a stand still as to what to do next for her, but we fear that something else is going on.
my mother was diagnosed with Celiac disease about a decade ago. her level had also dropped to a 3 and she almost died. celiac if you don't know is your body refusing to absorb any iron, natural or consumed. she is on a very unique diet and is doing well.
the baby was tested for this and was cleared for it.
we just don't know what else to do short of bringing her to a special hospital in another state-- which looks like what we may do.
she's doing well, feeling well and looking well but this pesky blood level just fluctuates too much; and we are aware that's what happens with anemic people but we want to know why all of ths started...why a 2 year old needs blood transfusion out of the blue and no one seems to have the answer for that and we fear it could happen again.
any suggestions would be soo appreciated.
thank you. :angel:

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Sun Flower
08-12-2006, 11:44 AM
Hi Christina, I am so sorry to hear about your niece. There are so many diseases that can cause Anemia, but I still don't understand why the doctors cannot find anything. Have they mentioned doing some more test? Did they mention if this might happen to your niece again? Remember that certain viruses and medication can also lower red blood cells significally. Here is a link that has some information on causes of anemia. I hope that helps a little and I wish the best for your niece.

http://kidshealth.org/parent/medical/heart/anemia.html


Sun Flower

Sun Flower
08-12-2006, 11:45 AM
Edit. I am new to this board. Is posting links permitted?


Sun Flower

christinavalent
08-12-2006, 11:59 AM
hi Sun Flower-- thank you so much for your reply. one dr. DID mention that the virus she had before the blood drop could have been the cause; yet there's no way to prove that. they did mention that it could happen again and told us it will unless we follow their instructions. what baffles us is they are so unsure of a diagnosis -- how could they be so sure their instructions will be the right ones? you know what i mean? its so frustrating. they (the dr.'s) have come to a point where they feel their hands are tied, all they keep doing is retesting her blood every few months and haven't mentioned more testing, even when we've asked for more tests. seems to us it's time to move onto a specialist. if her level hadn't dropped and her eyes hadn't continued to get puffy, we may not be AS worried, but with a history of severe anemia diseases in the family (my mom, for one) we are very worried that something might have been missed, or maybe just that these particular dr.'s weren't equipped to test further. i wonder why though they haven't suggested taking her elsewhere...guess that's what will do now anyway.
thanks for the link, i'm going to check it out now. :angel:

Sun Flower
08-12-2006, 12:17 PM
hi Sun Flower-- thank you so much for your reply. one dr. DID mention that the virus she had before the blood drop could have been the cause; yet there's no way to prove that. they did mention that it could happen again and told us it will unless we follow their instructions. what baffles us is they are so unsure of a diagnosis -- how could they be so sure their instructions will be the right ones? you know what i mean? its so frustrating. they (the dr.'s) have come to a point where they feel their hands are tied, all they keep doing is retesting her blood every few months and haven't mentioned more testing, even when we've asked for more tests. seems to us it's time to move onto a specialist. if her level hadn't dropped and her eyes hadn't continued to get puffy, we may not be AS worried, but with a history of severe anemia diseases in the family (my mom, for one) we are very worried that something might have been missed, or maybe just that these particular dr.'s weren't equipped to test further. i wonder why though they haven't suggested taking her elsewhere...guess that's what will do now anyway.
thanks for the link, i'm going to check it out now. :angel:

Your welcome christina. And yes, I'd suggest you move onto a specialist a Pediatric Hematologist would be the best choice.


Sun Flower

Shamrock
08-12-2006, 11:56 PM
Christina,so sorry to hear about your little niece. I have 4 nieces that I adore and I'd be terribly worried if they were sick. Anyway,I have a good friend whose son had the same thing happen to him when he was 3. Out of the blue after having a winter virus his Hct and Hgb dropped to dangerously low levels. Their pediatrician sent them immediately to a Pediatric Hematologist at Children's Hospital in Boston,MA. They ran tests and discovered that it WAS due to whatever virus he had. He had to have 3 or 4 blood transfusions at the time and is now a healthy,happy 6 year old. Take her to a good Pediatric Hematologist at one of the major hospitals that treats children in New York City. I'm sure they'll be able to get to the bottom of the problem quickly as that is their specialty. Best of luck to you and your family.:)

 
 
 




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