I am forwarding on this note from a friend of mine. I hope you find it helpful!
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Hi Krista,
I hope that your daughter is doing fine. I am a mother of two sweet little girls myself (3 1/2 years and 7 months old). A friend of mine saw your posting, and forwarded it on to me because I have neutropenia. I was diagnosed when I was 30 (now 36). I didn't always have a low white cell count, but was getting strange things, like staph infections, etc. and pressed my doctor to find out what was going on.
Upon discovering it, they did a bone marrow test, which was normal, and did a lot of other blood tests before it was finally diagnosed as severe chronic neutropenia. I have a wonderful hematologist that tried out shots of Neupogen on me for a while, and it did increase my counts. However (and here's the "good" news), I don't really have any symptoms. Even when my neutrophil counts (neutrophils are mainly responsible for fighting infection) were as low as 200, which is low even for cancer patients undergoing chemotherapy. The main thing that I deal with is getting really tired at times. Usually when I'm overdoing it and not getting enough sleep, which can happen pretty often as a mom! But, most often I feel great, and just will have a day when I can be in bed almost the whole day. That only happens every several months at the most. I am not taking any medication for it, because there really is no point in doing so.
I have a friend who also has neutropenia, and her symptoms are basically the same as mine. The cause isn't exactly known, but for me they think it could have been an antibiotic that I took, or perhaps a case of mono that went untreated. I don't know if this is the case for everyone, but I have a harder time with bacterial infections (like if I get a cut in my mouth) than viral infections. I hardly ever get really sick, like with the flu, etc.
The best advice I can offer if your daughter does have this is to make sure that she gets a good diet and plenty of rest, which you're probably already doing! I hope this helps you to better understand what you might be dealing with, and to feel encouraged that it is controllable.
If I can answer any other questions for you, please let me know. I hope that you get your answers about your daughter's diagnosis soon, and that everything will be fine.
Best wishes,
Beth O