My Daughter May Have Neutropenia....heard of It?

Updated on April 06, 2008
P.A. asks from Thousand Oaks, CA
8 answers

My 9 month old daughter's pediatrician thinks she may have a blood disease called Neutropenia. I don't know much about it, except that her white blood cell count is low. There is still a chance she does not have it, but I am still curious about others experience with it?

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So What Happened?

We ended up having a blood test (which My daughter didn't even cry for...I was so proud of her) and they came back NORMAL!! Yeah!! What a relief! Thank you for all your encouragement and information.

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J.H.

answers from San Diego on

Hi Krista,

My son was diagnosed with autoimmune neutropenia when he was around 9 months old. There are different types of neutropenia, which means it's a lack of neutrophils. Neutrophils are a type of white blood cell, consisting of 60%-75% of your total while blood cell count, and they are used to fight bacteria in the body. There's a lot of information out on the net if you do a search. There can be very scary causes of neutropenia, and the couple of months it took us to confirm the type our son has was not easy either, but at least we now know.

Our son is just like any other normal kid, and no ones knows or even suspects there's anything wrong with him. Most people just think we're paranoid germaphobes always wiping things and his hands with antibacterial wipes.

Anyway, good luck, and hopefully, you find out the best from your dr.

2 moms found this helpful
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R.H.

answers from Los Angeles on

I am forwarding on this note from a friend of mine. I hope you find it helpful!

-------------------------------------------------------

Hi Krista,

I hope that your daughter is doing fine. I am a mother of two sweet little girls myself (3 1/2 years and 7 months old). A friend of mine saw your posting, and forwarded it on to me because I have neutropenia. I was diagnosed when I was 30 (now 36). I didn't always have a low white cell count, but was getting strange things, like staph infections, etc. and pressed my doctor to find out what was going on.

Upon discovering it, they did a bone marrow test, which was normal, and did a lot of other blood tests before it was finally diagnosed as severe chronic neutropenia. I have a wonderful hematologist that tried out shots of Neupogen on me for a while, and it did increase my counts. However (and here's the "good" news), I don't really have any symptoms. Even when my neutrophil counts (neutrophils are mainly responsible for fighting infection) were as low as 200, which is low even for cancer patients undergoing chemotherapy. The main thing that I deal with is getting really tired at times. Usually when I'm overdoing it and not getting enough sleep, which can happen pretty often as a mom! But, most often I feel great, and just will have a day when I can be in bed almost the whole day. That only happens every several months at the most. I am not taking any medication for it, because there really is no point in doing so.

I have a friend who also has neutropenia, and her symptoms are basically the same as mine. The cause isn't exactly known, but for me they think it could have been an antibiotic that I took, or perhaps a case of mono that went untreated. I don't know if this is the case for everyone, but I have a harder time with bacterial infections (like if I get a cut in my mouth) than viral infections. I hardly ever get really sick, like with the flu, etc.

The best advice I can offer if your daughter does have this is to make sure that she gets a good diet and plenty of rest, which you're probably already doing! I hope this helps you to better understand what you might be dealing with, and to feel encouraged that it is controllable.

If I can answer any other questions for you, please let me know. I hope that you get your answers about your daughter's diagnosis soon, and that everything will be fine.

Best wishes,
Beth O

1 mom found this helpful
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D.O.

answers from Las Vegas on

I have a colleague in the advocacy world named Kelly...her son has Neutropenia if I'm not mistaken...and she is also a consumer advocate at Coram (infusion services for blood disorders, so her work life mirrors her home life). I'm sure she wouldn't mind directing you to information! E-mail her at ____@____.com or call her on the patient help line at 866-855-2905 and tell her D. Oliver sent you.

For more information, contact the National Neutropenia Network:

http://www.neutropenianet.org

And here is another great website for information, although the support network is based in Canada:

http://www.neutropenia.ca

1 mom found this helpful

J.E.

answers from Los Angeles on

Hi Krista. I have not heard of it per se, as the name stands, however if it is related to the immune system being weak, likely she has an infection or toxicity in her body that she's been fighting for a long time, and it is weakening her body. She may have 'contracted' this infection or toxicity in utero or at or after birth... All are possibilities. I don't know what the doctors recommend, but if you have not tried any alternative or holistic remedies first, then you have not tried everything available, prior to a life of medication or whatever the docs recommend.

As a mom and holistic practitioner, I assure you that holistic remedies do work, especially QRA and premier research products. We see a lot of children, infants and newborns alike in our practice and we treat them all and they all get well. We use non-invasive methods including QRA and with accuracy and precision we can figure out what is going on with your little one and provide you vitamins, herbs or other topical remedies to heal her body.

As Jenny McCarthy mentioned on her Larry King Live talk last week, often these types of conditions are 'vaccination injury'. If the child has environmental toxin overload or other infection, then vaccinations will weaken their immune system and onset some type of 'illness'.

I'm happy to help. You can check out our website or call for more information. We follow all of Dr. Marshall's protocols too. He's on national radio on Saturday mornings talking about his protocols and how they work.

Namaste,
J. Eltman, MPH, RD
Preventive & Therapeutic Holistic Health
www.CreativeNutrition.com
1.877.5.EATWELL
Author: The NO DIET Diet: Healthy Meals in 5 Minutes

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S.C.

answers from Los Angeles on

I had never heard of it before today, but have looked it up on several reputable medical websites (example: www.ucsfhealth.org, www.mayoclinic.com) & it can be very serious. I am sure that your doctor is running the proper tests, but I would go to these websites to learn more about the symptoms, treatments, etc. while these are being done. Low white blood counts can be built up naturally, though, so make sure that she is getting nutritious "whole foods" (raw produce). Since she is so young, this can be done by pureeing them. You might also want to check out this whole food nutritional product on www.juiceplus.com/+sc57599. Dr. William Sears (www.askdrsears.com), a well-known Pediatrician, author of 36 books, & health editor for Parenting & Baby Talk magazines is a firm believer in this product & its ability to balance the immune system to fight off disease. This product doesn't replace proper nutrition or fresh, raw produce, but it does help "bridge the gap" between what we are able to eat & what our body actually NEEDS. I have a lot of resources, so if I learn of anything else that will help you I will let you know. I will be praying for you & your daughter!

S.

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A.B.

answers from San Diego on

I have Gaucher Disease, which is very rare but affects my bone marrow. However, I was hospitalized in Feb for an unrelated infection and was told I was Neutropenic. I was given an injection to get my bone marrow to produce more white blood cells. Still don't know too much except that your daughter can be at more risk for infections. I had to wear a mask when my kids came to visit so that I wouldn't catch any viruses they might have had. Hang in there and God Bless.

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L.A.

answers from San Diego on

Neutropenia is not a disease, but a disorder - a symptom of a disease. It does occur naturally in many blacks and people of Jewish descent. in caucasians, it is a symptom of an underlying cause. Unless it lasts longer than 3 months it is a transient disorder and nothing to worry about. If it does "stay", it will be diagnosed as anywhere from mild to severe, and the cause will be determined. Viral infections can cause short term mild neutropenia, so until you know for sure what you are dealing with, try not to stress out. Easier said than done, I know.

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M.L.

answers from Los Angeles on

yes it very rare my nice also had it the resurch we got on it is that if they young they may grow out of it my nice got it when she was 15yo. I went to web md and got info they really dont know what causes it but it can be dangers in older children such as bleeding very bad brusing some say that by removing the spleen it goes away but it dosent allways work there is a speicalist in dallas tx he has a web sight. my nice first became concerned because of the brusing she was very athletic but had to stop because any bumps by team members put her in danger it is serious but can be handled see a oncologist they tried many things with my nice chemotherapy was the only thing that helped her please do your resurch iam sorry i dont have the web sights handy i will pray for little one because they are so precius.

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