Hello, new to this website.

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Offline allie

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Re: Hello, new to this website.
« Reply #15 on: November 11, 2011, 05:40:01 AM »
Hey Andy,

I, too, am so confused! I wanted to write you even though there is no new news, to tell you the two CBC's were performed at two different labs. The first one at Quest Diagnostic, and the second, most recent one at LabCorp. Thank you for the reassurance about the possibility of my daughter suffering. I was terribly worried, but what you said makes sense, that she would show outward signs of suffering if she were. Evie's hematologist is at the Pediatric Loma Linda Medical Center in Loma Linda, CA. They have a good reputation around here. I'm really hoping that I get some answers at her appointment on Monday. I'll write more when I know more. Thank you, thank you!

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Offline allie

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Re: Hello, new to this website.
« Reply #16 on: November 18, 2011, 05:47:56 AM »
Hello, a quick update on my daughter. I think it's good news. The hematologist said he thinks Evangelina has iron-deficient anemia and prescribed iron supplements. I was so happy to hear the news, and yet I left feeling quite strange. I didn't get the feeling he knew about thalassemia very much at all. For example he said that Evangelina's newborn screening test was worthless, because it would not catch alpha thalassemia as hemoglobin barts are not present in newborns?? When I asked if he had read the hemoglobin electrophoresis tests, he said he hadn't, nor had he read her latest CBC. He said those tests aren't reflective of any types of alpha thal? He said the only way to diagnosis even in newborns is through a DNA analysis. After  I asked, he agreed to order an iron test, and then at the very end ordered a DNA analysis for alpha thalassemia. When I asked if he would take the time to read the tests, he declined and just said that my kid was obviously thriving, (can't argue with that,) and that there were way sicker kids with cancer and in need of bone marrow transplants and that I should consider myself lucky. (Also, can't argue with that.) I truly hope he is right, that Evangelina is iron deficient. But I'll be relying on the test outcomes I think.

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Offline Dori

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Re: Hello, new to this website.
« Reply #17 on: December 03, 2011, 12:52:06 PM »
But you never saw results of iron panel tests?
How's Evie doing now?

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Offline allie

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Re: Hello, new to this website.
« Reply #18 on: December 03, 2011, 09:37:26 PM »
Hi Dori, thanks for your interest. No, I never saw the iron panel tests or the other tests for that matter. In fact, Evie has to go in for all the same tests I mentioned before because her tests were lost!! Unbelievable. I'm feeling pretty frustrated, as additionally, they had ordered blood tests at the same time for me to determine my status as a possible carrier, and they were lost with my daughter's patient file! It's frightening to think that if my child really has a disorder that needs to be monitored and treated, how arduous it is to make that happen. We're on month four now trying to get any diagnosis.

But, to end on a positive note, Evie continues to be a happy and active toddler. Her growth hasn't slowed and she has her good nature as always.

 

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