When I originally wrote this article, I was in the throes of neutropenia with my very young daughter. Many years have gone by and we now know that mold exposure and more specifically, exposure to the mycotoxin Trichothecene, caused her neutropenia. This issue resolved itself very quickly after we left our moldy house and everything we owned behind.
I have updated this article about neutropenia in children to serve as a better resource for parents. I am including the original contents of this article at the end so that you can read more about our journey with neutropenia if you so choose.
What Is Neutropenia?
Neutropenia is a condition in which the number of neutrophils in the bloodstream is decreased. Neutrophils are a type of white blood cell also known as polymorphonuclear leukocytes or PMNs. Neutropenia affects the body’s ability to fight off infections. Neutrophils contain enzymes that help the cell kill and digest microorganisms it has engulfed by a process known as phagocytosis. Neutrophils are made in the bone marrow and released into the bloodstream. The neutrophil has a life-span of about three days.
To help you understand neutropenia, let me briefly explain how this condition is defined. The white blood cell count (WBC) is the number of white blood cells in a volume of blood. The normal range for the WBC varies slightly among laboratories but is generally between 4,300 and 10,800 cells per microliter or cubic millimeter (cmm). The absolute neutrophil count (ANC) is determined by the product of the white blood cell count (WBC) and the fraction of neutrophils among the white blood cells as determined by the WBC differential analysis. For example, if the WBC is 10,000 per microliter and 70% are neutrophils, the ANC would be 7,000 per microliter.
An ANC of less than 1500 per microliter (1500/microL) is the generally accepted definition of neutropenia.
Neutropenia is further classified as:
- Mild if the ANC ranges from 1000-1500/microL
- Moderate with an ANC of 500-1000/microL
- Severe if the ANC is below 500/microL
The 4 Types Of Neutropenia
Congenital neutropenia is present at birth. Severe congenital neutropenia is also called Kostmann syndrome. It causes very low neutrophil levels. In some cases, neutrophils are absent. This puts infants and young children at risk for serious infections.
Cyclic neutropenia is present at birth. Cyclic neutropenia causes neutrophil counts to vary in a 21-day cycle. Neutrophil counts fall from normal to low. A period of neutropenia may last a few days. Normal levels follow for the rest of the cycle. The cycle then resets and begins again.
In autoimmune neutropenia, your body makes antibodies that fight your neutrophils. These antibodies kill the neutrophils, and this causes neutropenia. Autoimmune neutropenia develops later in life.
Idiopathic neutropenia develops any time in life and can affect anyone. The cause is unknown.
There are 2 main ways neutropenia can develop.
1. If existing neutrophils are destroyed faster than they can be replaced.
2. If the production of neutrophils in the bone marrow is reduced.
Neutropenia can develop suddenly over a few hours or days (acute neutropenia), or it can develop gradually and last for months or years (chronic neutropenia).
Are There Symptoms Of Neutropenia?
Neutropenia itself has no specific symptoms. It is usually diagnosed when an infection occurs.
How To Test For Neutropenia
The following tests will help your medical practitioner determine if your child has neutropenia:
- A complete blood count (CBC) to measure neutrophil counts.
- Intermittent CBC tests three times per week for six weeks can help your doctor check for changes in neutrophil count.
- An antibody blood test to check for autoimmune neutropenia.
- A bone marrow trephine biopsy test.
- Cytogenetic and molecular testing to study the structure of cells.
Sit down if you aren’t already. There are a LOT! Almost all of these are related to preventing infection, as a child with neutropenia is at an increased risk of complications from infection.
- Wash hands frequently, especially before eating and after using the bathroom
- Do not cut or pick at your cuticles
- Brush your teeth after each meal and at bedtime
- Use an alcohol-free, antiseptic mouthwash daily (I like this probiotic mouth wash myself)
- Use a natural deodorant rather than an antiperspirant
- Avoid people with colds or other infections, as well as people who live with others who have a cold or infection
- Avoid contact with anyone who has recently been vaccinated and do not get vaccinated without your medical practitioner’s approcal
- Avoid crowds as much as possible
- Avoid public transportation
- Avoid day cares and schools
- Do not handle animal waste, including cat litter and fish tank water
- Always wear shoes
- Take showers not baths
- Protect hands with gloves
- Prevent constipation
- Wear sunscreen with a sun protection factor (SPF) of at least 15
- Take your child’s temperature four times each day
- Do not eat uncooked foods
- Stay away from fresh flowers, plants and gardening
- Avoid enemas, rectal suppositories and rectal thermometers
- Delay dental work
Call your doctor immediately if you have:
- Fever (100.5 F or higher), chills and sweating
- Flu-like symptoms (body aches, general fatigue) with or without fever
- Cough, shortness of breath and painful breathing
- Sore throat or sores in your mouth
- Redness, pain or swelling on any area of your skin
- Pus or drainage from an open cut or sore
- Diarrhea (loose or liquid stools)
- Pain or burning during urination
The Bottom Line On Neutropenia In Children
I’m not one to run to the doctor but neutropenia is NOT something you mess around with. Please work in conjunction with your trusted medical practitioner so that you can resolve your child’s underlying reason for having neutropenia.
Parenting A Child With Neutropenia – My Original Story
I have alluded to the fact that Tiny has a couple of health challenges. I really have not wanted to discuss them on my blog because I guess in a sense it makes it that much more real. I am not at all in denial about her issues but I just keep praying and hoping that somehow they will magically resolve themselves. Well, it is not going to happen and I felt that now was the time to share my experience parenting a child with neutropenia.
Tiny’s ANC range is generally 300-400/microL. Yes – she is in the severe category.
This is really, really scary for me as a parent. There are a lot of consequences of neutropenia that I have to be aware of. Neutropenia results in an increased susceptibility to bacterial infections. A simple cut or scrape can turn into a pretty big deal for Tiny. And as we all know, little ones are constantly getting scratched up. The most common type of infections are caused by bacteria normally found on the skin (such as Staphylococcus aureus) or from the gastrointestinal and urinary tract. Fungal infections are also more frequent. The infections may be limited to certain areas of the body (commonly the oral cavity, genital area, and skin) or may spread via the bloodstream to the lungs and other organs in severe, prolonged neutropenia.
Yeah – heavy stuff.
When Tiny gets sick, her ANC count plummets. Let me rephrase that. When Tiny gets sick, her already low ANC count plummets. Keeping her healthy is imperative. However, I do not want Tiny to live in a bubble and keeping her away from germs is impossible.
I am very mindful of where I take Tiny. If she has to go shopping with me I try to go during low traffic times. I do not allow her to sit in the cart and instead prefer that she walk around and help me pick out items. Playgrounds are chalk full of germs but at the same time they are out in the fresh air. I don’t avoid playground equipment but I do avoid Tiny playing with children who I do not know. Not all parents keep their sick children at home.
Birthday parties, get-togethers, play dates and the like are all on a case by case basis. If Tiny has recently been sick then it is not worth the risk of exposing her to germs in a large group of people, especially children. Even when she has been really healthy, it seems like whenever we go somewhere where there are lots of children, Tiny ends up ill.
Right now, parenting Tiny is wearing me down. She has been sick basically since November. She will be symptom free for a week and them bam! Another illness strikes. The tiniest of germ that sneaks into our house just ravages her. She cannot get her ANC count up high enough to fight off the germs that most children are not affected by.
The issue with Tiny being sick so often is that IF a bacteria entered her system through a cut or scrape, she might not be able to fight it. Antibiotics could be the simple solution but there is a greater possibility of her ending up in a hospital in critical care. And my personal belief is that you end up with more problems by being in a hospital than you do by staying home and trying to manage things.
Right now we are under the care of a great group of doctors. Tiny sees both a naturopath as well as a pediatric hematologist. She has her blood tested regularly (and is such a brave soul about it) so we have a good idea where her ANC levels are. So far we have no answers as to why she has neutropenia. All we know is that she was probably born this way although we did not discover it until she was about a year old.
Eventually, further testing may be needed. Right now, her hematologist feels that bone marrow testing is too great of a risk. She feels confident that Tiny does not have one of the more serious causes of neutropenia. It is highly likely that she has one of the viruses that constantly attacks the body’s ability to produce neutrophils. Down the road we may need to be more aggressive in treating this but for now, we are on a lot of homeopathic remedies. I also pump Tiny full of nourishing foods including bone broth, healthy fats, and coconut oil. Thank goodness she loves them all! Extended breastfeeding certainly is playing a very supportive role as well.
I cannot live my life in a doom and gloom state of mind over Tiny’s health woes. I admit that when she gets sick I do go on high alert. I freak out if she skips naps because I know her body needs rest. I get worried if she refuses to eat. But mostly, I just worry over what I did to cause this. Was it something that happened in MY body while I was pregnant? Was it the C-section birth that set her up for this condition? Was my breast milk toxic? Seriously, these are the thoughts that go through my mind.
I want to protect Tiny. I want to keep her away from every germ. I want her to say healthy for several months in row so her body can heal and hopefully begin producing those neutrophils she so desperately needs. But I have to balance my mother-bear instinct of protecting her with living life. None of us knows how long we have on this earth and my goal is to make sure that while Tiny and I are here, we live life to the fullest. So I will not keep her in a bubble. I will let her go out and get exposed to whatever germs are lurking. I will protect her from obvious germs and continue to support her homeopathically. But most of all, I will love her. Because neutropenia or not, she is still the most special, important person is my life.
Sources for this article include: