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Parenting a Child with Neutropenia

Welcome to the March 2012 Carnival of Natural Parenting: Parenting With Special Needs
This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have shared how we parent despite and because of challenges thrown our way. Please read to the end to find a list of links to the other carnival participants.


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 since this month’s Carnival theme is parenting a special need’s child, I felt that now was the time to share my experience parenting a child with 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.

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 treat 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, fermented cod liver oil, 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 not as powerful as it should have been? 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.

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Comments

  1. Stopping by from the carnival.

    We’ve tried the living in a bubble bit. It doesn’t work all that well (Acorn got his worst illnesses when the only places we went were doctors offices) and it drives everyone nuts. Parenting is always a balancing act, and I’ve always felt like the risk of illness is just one more thing to throw in the mix to balance.

  2. I wanted to say that your breastmilk contains activated neutrophils, so as long as you are breastfeeding, you are also supplementing her neutrophils with your own! These probably don’t show up in her WBC count because they are probably restricted to her gut and associated mucosal membranes rather than circulating. But I’m sure that they do help!

    http://www.jleukbio.org/content/54/2/97.abstract
    I have access to the full-text PDF as well, if you don’t have access and are interested.

    I am planning a post about leukocytes in breast milk as a followup to my recent post about breast milk cells, where I hope to discuss this in more detail.

  3. Wow. This is indeed heavy stuff. I had no idea you were wrestling with this. I can only imagine how difficult this must be, and how limiting for both you and your precious babe. I’m glad you are in the care of a great team of doctors with a well-rounded skill and philosophy set. You are giving her the best that you can.

    And sister, I hear you on the self-doubt, but (as you probably already know), this truly isn’t your fault. Breathe in healing, breathe out doubt.

    Hoping for the best for your little one.

    (p.s. I haven’t been to your blog in a long time, but I see you have a love affair with coconut oil… I use it for my dreads.:))

  4. It is so easy to blame ourselves as mothers for anything that goes wrong with our little ones. To me though, it sounds like you are doing everything right to help Tiny live the most healthy happy life possible!

  5. That is a lot to handle. I’m really glad that you shared this about Tiny because it is something that I previously knew nothing about and it helps me to be more aware and conscientious. (I tend to be pretty lackadaisical about germs and illness.) You really seem to be taking every precaution while still providing Tiny with a wonderful childhood of adventures and exploration.

    Much love to you and yours!
    Patti

  6. Jennifer, that must be so hard :( What is Tiny’s prognosis? Is this something she can recover from fully? Having had a sick baby for almost her whole 3 months on this earth, I can’t imagine what you go through month after month. You are so strong!

  7. Such a heartfelt and informative post, I really feel your struggle on making the best decisions for your child. Try to let the blame go, you did nothing to cause this and you can hold your head high knowing you are the best mother your daughter could wish for.

  8. Anonymous says:

    Hi Jennifer,

    I feel your pain and am so sorry. Four years ago, my daughter became neutropenic for no apparent reason. The first year was sheer hell as we rushed to the ER for IV antibiotics every time her temperature rose to fever level (which was every 3 weeks). We then tried GCSF injections in the hopes of over producing white cells and flooding her system with them. It seemed to work and she’s had normal counts for the past 2 years. Ask your hemotologist about it. Best wishes to you and your family.
    Joanne

  9. I am of the opinion that most people are overly worried about kids and colds, but I always try to stay away from other kids when Moira is sick, because I know there are lots of kids with compromised immune systems.
    I’m so sorry you have to deal with this with Tiny.

  10. Thanks for sharing your story. I think that mom’s guilt is pretty common when it comes to your child not being well. Good wishes for Tiny to stay healthy and for your team of doctors to find a protocol that works well for her and you!

  11. Wow, you are one seriously strong mama. I’ve often wondered what Tiny’s health problems were, and I’m so sorry to hear that it’s so severe. I hope there’s a resolution in the future — wouldn’t you both be so nicely bored to have her healthy! Just keep in your heart that her sickness is absolutely NOT your fault, and you are being an amazing, nurturing parent to your little one, which is just what she needs.

  12. Wow, what a heavy thing to be dealt with. :(( WTH, life? You’re a lovely, attentive momma, and I admire how you are striving to balance health, and embracing life for Tiny.
    The main thing that came through with this post was your love for and joy in your daughter, and that is beautiful! Many hopes for improved health in the future.

  13. Oh man, that’s incredibly heavy, and I’m so sorry that it weighs on you. I’m with Melissa there — you’re really strong and level-headed to try to balance life and health troubles. Good luck. <3

  14. Oh my word… Jennifer, I love you. I am finally aware of your beautiful daughter’s health issues- and it happens to be something I know nothing about, but am learning… I am so proud of you for all the dedication you give your family. I am giving you big hug, and if I could I’d be by your side in the toughest moments when you need a friend there. You are all in my heart and prayers.

  15. Jennifer, as parent to a special needs child, I can relate to the worn down feeling. My 11 year old daughter was diagnosed with Benign Focal Epilepsy last year and suffers from Tonic-Clonic (Grand Mal) and Focal seizures. For her the worst part is not the physical aspect, she doesn’t remember her seizures she says, but the emotional aspect is difficult. She must do things differently at school than others. She takes 2 different anti-seizure medications. She also has very little privacy now as we must keep a close eye on her. Installing a camera in her room so we can “keep an eye on her” has afforded her a little bit of time away from mom and dad, but she still doesn’t like the camera “staring at her”. There are so many “can’t do’s” for her now, can’t swim without an adult next to her, can’t bathe without mom nearby, can’t ride her bike wihtout mom or dad nearby, etc, etc, etc..
    I don’t sleep well at night because that is when most of her seizures have occurred. My husband and I take turns waking up and checking her, even though we have a baby monitor and night vision camera set up. We are both exhausted. And I can’t even tell you how horrifying it is to see my daughter have a seizure. It feels good to talk about it. You cannot keep it inside. I wrote about my experiences with our daughter’s Epilepsy on my own personal blog, crying like there was no tomorrow the whole time, but I felt so much better after. It is easier not to talk about it. I agree. Thank you for sharing this with us, and I have always said this about moms of special needs children: We are blessed. We have the strength to do what it takes to take care of our kids as best humanly possible. Hugs~ Lori.

  16. Thank you so much for sharing. Big HUGS!!!

  17. Wow, Jenn, that is crazy. I’ve never heard of such a thing. I’m sorry that you are having to go through this. Tiny has a great mom; if any can get her through this, it is surely you! Hugs,
    Carol

  18. Hi -
    First, I am so sorry to hear what you are going through, and completely empathize. I came across your blog while researching Neutropenia as my 20 month old son has Cyclical Neutropenia with an ELA2 mutation… and I haven’t even started reading but am thrilled to have found it. My son is on daily G-CSF injections but I am convinced I can help him recover through nutrition and supplements; though, it is so hard to find medical doctors to talk to about this, so doing most of the research on my own. So, can’t wait to read more of your ideas. Additionally, can I ask why your doctor things a bone marrow test is too risky and how she can tell by blood tests that it is now a serious cause? Our son has already had one bone marrow test (which we were told risks were not high), and they are wanting to do another soon that I am trying to avoid, so would appreciate any insight! How has her ANC been regulating by your homeopathic remedies? I would love to hear more about it! I have read that large doses of Vitamin D can also increase neutrophils, but of course our doctor had not heard this and was hesitant to try since my son was so young. Anyways, just wanted to let you know you weren’t alone; though, it is so rare. I would be happy to answer any questions if you have any as well! And, I am looking forward to reading more on your blog.

  19. Ashlea M. says:

    Hello my name is Ashlea.
    my son was just diagnosed with neutropinia. we are waiting to do special labs to find out how sever it is.
    He had this issue at 4 months but the doctors did nothing about it and figured it was just because he was sick. that is also the time i stopped breast feeding. i often blame myself for what has happened.
    He never wants to eat anymore bc he keeps getting sick and has runny noise all of the time. im so overwhelmed and scared about what is to come. At the moment im doing at home daycare, but i cant afford a lot and the sitter is getting annoyed. I cant put him in daycare because i would miss work and im a newly single mom. Are there any groups for moms like us. Is there any help for our kids to further their education with out having to put them in child care at such a young age so they dont get sick so much. i have so many questions. i hope you can help
    thank you for your time

    • Hi Ashlea! Shoot me an email please! It would be easier to discuss this offline. (I am horrible at checking comments but get to my email in a more timely manner.)
      jennifer (at) hybridrastamama (dot) com

  20. We discovered this week that my 18monthold son is also severely neutropenic. Would you mind telling me what homeopathic support do you use?

  21. Travis Culp says:

    Neutropenia is a common side effect of copper deficiency.

  22. Luz Prince says:

    Hi ! I’m from montreal, Canada. My 4 year old boy, Jason lives with SCN too, his leves are as low as 100 if he’s lucky, it’s been more that 3 years of a infections roaller coaster, and a year since we started neupogen (GC-SF) shoots every 3 days, and this just yesterday dr. Ask me to do it one day yes and one day no, cause since january we can just stay out of antibiotics, I’m seriously having an emotional break down rigth now, so sorry for putting out like that on here, just feels like keeping it in most of the times don’t work. We’ll be back at hospital on monday to decide what to do about injections and hopefully we make ir till monday and this present infection is gone, started as a cold, then sores in the gums join, then ear pain… But God knows best, so just keep going, they’ll be ok. (:

    • Hi Luz,

      All I can say is hang in there and if you are the praying sort, keep on praying. My daughter is now five and her WBC levels have been getting better and better. I have worked tirelessly to keep her health steady through her diet and it has worked. One day at a time mama… XO

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