Help!

[AddyGGsMom]

My daughter has Idiopathic Chronic Neutropenia is. Her normal ANC is from 1000-1200 and will dip below 500 periodically but often. She has had 2 bmb. First one at age 2 she had >95% cellularity. This time at age 5, she only had 60%. What could this meAn?

[Neil Cuadra]

Originally Posted by AddyGGsMom

My daughter has Idiopathic Chronic Neutropenia is. Her normal ANC is from 1000-1200 and will dip below 500 periodically but often. She has had 2 bmb. First one at age 2 she had >95% cellularity. This time at age 5, she only had 60%. What could this meAn?

AddyGGsMom,

As a caregiver, I'm always sorry to hear that a youngster has a disease like ICN. Many people go though life with ICN and no major complications, but you certainly want to keep a close watch on your daughter.

I've read that cellularity is usually normal with ICN, although sometimes mildly low, but 60% is pretty low for a child. Normal cellularity is usually still around 90%, plus or minus, at age 5.

Her frequent swings from mild to moderate neutropenia would be a concern to me. It's hard to let kids be kids while trying to avoid infectious sources. You've been living with this for years, so I'm sure you know this better than anyone.

What else did you learn from the bone marrow biopsy results? Do they think that her neutropenia is the direct result of low cellularity, for example insufficient myeloblasts?

[AddyGGsMom]

Most of it seemed normal. This was the only thing that seemed abnormal. She is currently in the severe range. Just had her counts done. She had scarlet fever and then a week later had norovirus confirmed. Her counts went higher than she has ever had them- ANC of 7800!!!!! She's never been above 1500 ever!! Then a couple days later 400. The lady at the Neutropenia Registry said it was normal for Idiopathic to rise like that with an illness, but she never has before. The biopsy did say "morphologic findings in the specimen favor a consumptive or cyclic etiology for patient's neutropenia" she was negative for the Elaine gene.

[Neil Cuadra]

Originally Posted by AddyGGsMom

The lady at the Neutropenia Registry said it was normal for Idiopathic to rise like that with an illness, but she never has before.

AddyGGsMom,

When you have an active infection, your white count naturally rises, and that artificially inflates your ANC. Perhaps your daughter's ANC went up those previous times but her white count simply wasn't measured at the time. In any case, it's the ANC when you're otherwise healthy that assesses your infection risk.

Has her doctor referred to her disease as cyclic neutropenia, which seems to be what the biopsy report is referring to? It usually takes a doctor to translate biopsy reports into English that the rest of us can understand.

Have the doctors recommended any treatment other than handling infections as they come up? With a child, you have to think both short-term and long-term about the approach you take.

[AddyGGsMom]

We are going to start on Nupogen. I have taken her CBC counts routinely to check for cycli and it didn't fit the usual pattern. We also have taken CBC's
Routinely with infections and this is the first time she has mounted this kind of response.

I am mostly worried about her cellularity and what that could mean. I put a call in to our nurse for the hemetologist to call me and talk about it and just emailed the registry for help as well. everything I can find points to bone marrow failure.