Patient Comments: Neutropenia - Describe Your Experience

Please describe your experience with neutropenia

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: Masie, 65-74 Female (Patient) Published: April 03

I got neutropenia when I had a toxic shock to quinine. It wiped out my white cells, my neutrophils were zero. I have to live with this.

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Comment from: Momof3, 0-2 Male (Caregiver) Published: October 08

My son has idiopathic neutropenia. They are still searching for the cause. He'll have fevers for days. The hospital staff doubts me now because sometimes he has them in there, other times not.

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Comment from: lilica, 25-34 Female (Patient) Published: July 19

I have neutropenia, since my 20 years, 3 months ago I had vomiting, and I was feeling very tired, I did a blood test that showed that my neutropenia was moderate, was put forward for the hematologist, was not necessary to examine the bone marrow, and he said that I should not neutropenia do not cause me any thing serios, not even fever.and i always feel good.:))))))

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Comment from: KathieP, 19-24 Female (Caregiver) Published: July 17

My daughter was experiencing ongoing diarrhea. Blood tests were done to determine if she had Crohn's disease or IBS. She did not, but blood came back showing she was extremely neutropenic. (100!). She has since been seeing a hematologist, been through more tests than I can list, including bone marrow biopsy.noh, she is now 24, diagnosed at 23. Nobody knows how long she has been this way or why. She has had to go to the ER twice for high fevers/infection. Living with this hanging over her is so disheartening, worrying that every little illness can result in life-threatening infections is awful. The only help is the Neulasta shot which makes her very nauseous and gives pounding headaches for days. And that only helps temporarily. I pray for some type of cure or miracle.

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Comment from: BERT, 55-64 Male Published: June 10

I am 56 years of age I have had neutropenia for 18 years my wcc is 2.5 and my neutrophils are .83 I have had bone marrow tests etc but I have never been sick or been affected by it some can not understand I am not conplaining yet.

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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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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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