Patient Comments: Neutropenia - Describe Your Experience

Please describe your experience with neutropenia

Comment from: Sarah, 75 or over Female (Caregiver) Published: October 08

My mum was diagnosed with T-cell LGLL in 2007 and had severe neutropenia. She was given cyclosporine but had a bad reaction to this course of medicine. Her neutrophils went up to 1.5 from 0.5 and stabilized at around 1.0, however, they have gone back down to 0.5 again and she suffers badly with mouth ulcers on her gums and tongue, but not sore gums as such. I know this form of leukemia is very rare.

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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: 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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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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