Author Topic: autoimmune neutropenia  (Read 4506 times)

Offline momto12

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autoimmune neutropenia
« on: May 29, 2013, 04:48:09 AM »
Hello
Is there anyone with experience with autoimmune neutropenia?  I had 3 babies on a row with neutropenia.  With all 3, the neutropenia disappeared later on.  The hematologist finally discovered that my husband's and my neutrophils were different and I had formed antibodies against his neutrophils.  We assume I was passing those antibodies on to my babies while nursing and that was causing their neutropenia.  Looking back, it is clear that their neutropenia diisappeared when I quit nursing.  I decided then not to nurse any more babies longer than a week or so, to give them the benefit of the colostrum without causing neutropenia.  So far, I have had 3 more babies, all formula fed, none had neutropenia, and very rarely get sick.  However, the 3 who had it as babies recently started getting infections again and so I had their levels tested and all three have neutropenia again (they are now 8, 6 and 5).  In addition to that, I have another daughter, now 10, who never had neutropenia as a baby, but was diagnosed with it at age 5 (probably had it a year by that time, going by her frequent infections).  So I now have 4 children with neutropenia.  Bone marrow biopsies have been normal. The hematologist is totally puzzled.  He thinks there must be a genetic problem going on.  WIth normal levels being between 1.5 and 9.0 our doctors are happy as long as they are at least 0.5.  However, my 10-year-old's levels are almost always 0.2 or 0.3.  The other 3 kids were rediagnosed with levels of 0.1, 0.1 and 0.4.  We have seen levels drop down to 0 with a few of them. 
I searched for neutropenia on the forum and came up with zero results, but I thought I would ask anyway. 

Offline mykidsmom

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Re: autoimmune neutropenia
« Reply #1 on: May 29, 2013, 07:24:44 AM »
We have not had autoimmune neutropenia but I have a lot of experience with blood diseases.  In our immediate house it was thrombocytopenia (low platelets).  First, my MIL lived with 0- .01 neutrophils for a very long time with no infections at all because she ate a VERY clean, healthy diet that was very low in sugar.  So it can be done, but one has to work at it.  Second, this is definitely a genetic issue going on given how many of your kids have it.  Can I recommend you look into homeopathy for dealing with this?  It is extremely effective, non-toxic, and can work at the genetic level to remove the risk over the long term.  This is how we are treatng the ITP in our house and it works really well.  We have a genetic tendency to blood diseases with all three cell lines (reds, whites, platelets) so are very careful about keeping a good diet but also working on the underlying genetic tendencies.

For I know whom I have believed and am persuaded that he is able to keep that which I've committed unto him against that day.

Offline momto12

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Re: autoimmune neutropenia
« Reply #2 on: May 29, 2013, 07:55:24 AM »
I have never had good results yet with homeopathics, but I am certainly willing to look into it if it worked for you.  Is there a website you would recommend with reliable information?  What did your MIL's diet look like, besides having no sugar?  I have in the past had my 10-year-old on a grain-free, dairy-free, sugar-free, additive-free diet.  She was on it for a few months, but then I heard about a lady in our area who did allergy testing and elimination with great success.  Her methods worked very very well for my son with celiac disease, so I took my daughter there.  She tested very allergic to white blood cells in general, and also neutrophils.  However the allergy elimination hasn't been successful.  We have been back a few more times to get it redone, but so far the neutropenia remains.  I am seriously considering going back on the diet again, with all four kids now, but would first like to know if there are other options that work.  I have tried a herb to stimulate the immune system (can't remember which one that was because it was several years ago) but it only seemed to make things worse, which immune stimulants can do for an autoimmune disease.

Offline mykidsmom

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Re: autoimmune neutropenia
« Reply #3 on: May 29, 2013, 02:25:01 PM »
We use h-pathy almost exclusive for our medical care since our experience with our ITP boy.  This is a case where you MUST use a professional h-path - especially if you feel like you cannot pick remedies well.  Can you PM your city and state to me and I'll see if I can find someone good close to you.

For I know whom I have believed and am persuaded that he is able to keep that which I've committed unto him against that day.

Offline momto12

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Re: autoimmune neutropenia
« Reply #4 on: May 29, 2013, 02:38:58 PM »
I am from Lethbridge, Alberta, Canada. 

Offline momto12

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Re: autoimmune neutropenia
« Reply #5 on: May 29, 2013, 02:44:32 PM »
I did take my now 8-year-old to a homeopathic doctor here in Lethbridge when she was a baby.  He came highly recommended by others, but he had never heard of neutropenia, didn't have a clue what it was, and the remedies he suggested didn't help.  I don't know if there would be any others in this area somewhere. 

Offline mykidsmom

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Re: autoimmune neutropenia
« Reply #6 on: May 29, 2013, 03:03:20 PM »
If he's good, it shouldn't matter that he'd never heard of it as it's treated the same as any other disease in h-pathy.  Based on the symptoms, which is low white cells.  Let me do some looking.......
For I know whom I have believed and am persuaded that he is able to keep that which I've committed unto him against that day.

Offline mykidsmom

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Re: autoimmune neutropenia
« Reply #7 on: May 29, 2013, 07:32:16 PM »
I did take my now 8-year-old to a homeopathic doctor here in Lethbridge when she was a baby.  He came highly recommended by others, but he had never heard of neutropenia, didn't have a clue what it was, and the remedies he suggested didn't help.  I don't know if there would be any others in this area somewhere.

You're going to have to do some checking with these people.  You want to look for a classical homeopath that does ONLY h-pathy.  You do NOT want a naturopath that practices h-pathy as a part of his practice.  You want strictly a homeopath.  Here's some names I found.  Most h-paths will do phone consults if none of these are close to you.  I'm basing these names on who they've studied with knowing that those people have excellent reputations as teachers and homeopaths themselves.

http://www.choicepoints.ca/about-us

http://www.edmontonhomeopathy.ca/jessica.htm

http://powersofhomeopathy.com/about/

And finally, I would recommend you contact this person http://joettecalabrese.com/   and ask if she's familiar with any of the above individuals.  She also takes patients over the phone but is in NY.  I can vouch for her personally as she is treating two of my children currently.  But she may also know someone in Canada that could work with you closer to home. 

Feel free to keep asking questions.  It took us some difficult months to find someone that could treat our boy and actually help his body heal itself (this is our second h-path).  It's a long road ---- but it can be done, and that is something you must hold onto. God created their bodies to heal..... You also have to be persistent to find a good practitioner.  Like medical doctors, there are good ones and bad ones.  Searching can be frustrating, but in the end, it's worth it.

For I know whom I have believed and am persuaded that he is able to keep that which I've committed unto him against that day.

Offline momto12

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Re: autoimmune neutropenia
« Reply #8 on: May 30, 2013, 06:29:38 AM »
Thabk-you very much for this.  I will take a look and see if they are able to help my kids.

Offline mykidsmom

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Re: autoimmune neutropenia
« Reply #9 on: May 30, 2013, 07:25:15 AM »
Keep us posted.  I KNOW h-pathy can help this issue with your kids. 

Blessings
For I know whom I have believed and am persuaded that he is able to keep that which I've committed unto him against that day.