Patient Comments: Neutropenia - Describe Your Experience

Please describe your experience with neutropenia

Comment from: Alehx, 0-2 Female (Caregiver) Published: January 16

My daughter was admitted in the hospital for dehydration and high fevers. Her white blood cells (WBC) and neutrophils (part of WBC) were extremely low than the normal range. These cells fight for infection. She was placed on reverse isolation and was put on "neutropenic precautions", meaning to protect her from getting any bacteria or germs because of her poor immune response which basically means she is susceptible for infection. Hematology (doctor for blood infections or cancer patients), was consulted. Her attending physician is an infectious disease doctor. They did all kinds of test such as blood count, virus tests etc. I am a nurse and if they do all these tests, I think maybe she has a more serious condition that I need to worry about. To make the long story short, results came back and she is positive for Epstein Barr Virus (EBV) which is commonly called infectious mononucleosis or the "kissing disease". And this virus usually causes the neutrophils to go down. Now she's fine and seems like she just had a typical common coughs and colds.

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Comment from: chiefdwd, 13-18 Female (Caregiver) Published: January 16

My daughter is 13 years old and has an extremely low white blood cell count. She has had bone marrow tests, CT scans, and biopsy of lymph nodes in her neck. She has had more blood test than I can mention. In a nut shell she has been through more than a frog in biology class. There are still no diagnoses from the doctors. She immediately fell into this condition after having her tonsils and adenoids removed. She has never really been seriously ill when growing up, just occasional ear ache and such. She even had all her wisdom teeth removed and recovered with no problems, but when her tonsil and adenoids were removed, she complained of severe ear pain, extreme headache and these symptoms were accompanied by a severe fever of 104 plus.

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Comment from: emma, 0-2 Female (Caregiver) Published: May 01

My daughter is almost 3. She was admitted to hospital for a viral infection and diagnosed with neutropenia. I have been taking her for weekly blood tests and her levels just keep getting worse. The doctors don't seem too concerned and just want to keep checking her. I don't know if this is normal or if I should seek a second opinion.

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Comment from: sltwitness, 45-54 Female (Patient) Published: November 11

I am now 51 years old, and the first "diagnosis" of neutropenia that I remember was in my late 20s. My allergist tried to determine the cause to no avail. However, I do have a history of Epstein Barr Virus, and also have acetylcholine allergy (a muscle enzyme, also a reaction to changes in hot/cold temperatures), that may be causal. My neutrophil counts generally range from 1300 to 2500, but have been as low as 900, which prompted the lab to insist that I see a hemotologist/oncologist. All tests for various causes were negative, and I was not a candidate for a bone biopsy due to an allergy to the topical anesthetics used during the procedure. He said that if I ever succumb to continuous infections, we would need to do the biopsy (with IV anesthetics and sedation). I seldom get sick, and I do get the flu shot annually as a precaution.

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Comment from: 35-44 Female (Patient) Published: October 23

I am 44 years old and was diagnosed with neutropenia in my 20's. I had the bone marrow tests twice and the only thing they believe contributed to this condition is that when I was 10 years old I had my appendix out in another country and was given a very strong antibiotic (chloromycetin) that was outlawed in the US and they think the drug damaged my bone marrow. Overall, I lead a healthy life, but I need to watch for infections closely and see the doctor right away if I get sick. Sometimes, even with antibiotics, I have a hard time fighting illness or getting over coughs. I always get the flu shot. I have some family members who also have somewhat low white blood cell counts, but not as badly as I do.

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Comment from: Taylor, 3-6 Female (Caregiver) Published: September 09

I have two children. My 4-year-old daughter has been diagnosed and my 18-month-old little girl too. They have both been on folic acid from birth as they are pre-term babies, but this is a condition that has grown progressively worse. They are both classed as Chronic Neutropenia cases now. My 4-year-old did get her numbers to an acceptable level, but they have recently dipped again. She is always pale, but my baby is yellowish. We are awaiting bone marrow tests again!

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Neutropenia - Treatments Question: How did you treat your neutropenia?
Neutropenia - Symptoms Question: What symptoms did you experience with your neutropenia?
Neutropenia - Diagnosis Question: In addition to blood tests, what other types of tests or exams did you have to determine the cause of your neutropenia?

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