Has Rachel been seen by an Immunologist? If not, I would recommend her getting the opinion of an immunologist who specializes in the immune system. If you need help finding one in your area, please let me know if I can help. As you know autoimmune disease like evans is the cause of the immune system attacking the wrong cells, and a low total white blood count is especially a sign that the immune system is not working correctly.
There are many different types of white blood cells. Even though her total wbc is low, some white cells may be working while others may not. For example B cells make antibodies such as ImmuneGlobulinG (IG), which can be easily replaced with IVIG. Nuetrophils are another type of white blood cell. Nuepogen stimulates the body to produce more nuetrophils. There are also T-cells which make up most of the lymphocytes in our blood. Do you know if her lymphocyte count is low? (it is usually listed near nuetrophils on a cbc). Another wbc is the NK cells. Unfotunately T cells and NK cells are not easily fixed with any replacement therapy. An immunologist should be able to run the proper tests that can separate Rachel's wbc count and find the cells that are either missing or not working properly. Then you can make the decision on the best possible treatment for her.
Although my son is only 8, we've been down that road so let me know if you need anything.
Amy Walsh
--- On Sun, 12/21/08, rnm171 <rnm171@...> wrote:
From: rnm171 <rnm171@...> Subject: [EvansSyndrome] Low white blood cells To: EvansSyndrome@yahoogroups.com Date: Sunday, December 21, 2008, 10:20 AM
I have been reading the posts lately and I have'nt posted anything for a while. Sorry to hear about Hannah, we too had to cancel a Dream come true vacation to Hawaii due to our daughter Rachels' illness. We eventually went to Disney and the Disney cruise. We still have concerns when it comes to booking a vacation. Rachel is now 19 years old, she has had very low white blood cells for about 2 years, they have become extreamly low that past few months, she is taking Nueogene shots every day, she sometimes gets mouth sores and tongue sores and fevers. She has been taking these shots for almost 2 years now, she has had bone marrow asperations done to see if white blood cells are being made and they are but they don't know why her WBC is so low. We are concerned that she will get sick and won't be able to fight it off. Does any one else have a situation like this or has had some other treatments for the
low WBC. Rachel has had a liver transplant when shewas 9 months old. Thanks, Nancy
I have been reading the posts lately and I have'nt posted anything for a while. Sorry to hear about Hannah, we too had to cancel a Dream come true vacation to...
... Hello Nancy, My son Aaron is also 19,he is going through low globulin count now even though we were told that monthly dose of ivig should help. Other ...
Hi Nancy, Has Rachel been seen by an Immunologist? If not, I would recommend her getting the opinion of an immunologist who specializes in the immune...
Hi Amy, Thanks for your response and insight. Today Rachel had a hematology appointment to check her levels. They were not very good, WBC was 2.0, ANC ...
Hi Nancy, My son is on Neupogen - without it his ANC was usually around 200. His biggest problem was pseudomonas skin infections and sinus infections....
Hi my name ia Haskill Edwards ,I was told I had Evans Syndrome over four years ago,I was on prednisone 80 mg for almost a year I was given Rituxan 8 treatment...
Susan. My daughter Madison is 8 and had Rituxan in 2006. SHe however did not have any luck with it. We did all 4 rounds but never really saw an increase. We...
To everyone in the group, you are such an insipration to me. I wish all of you the best health and peace for the new year. As the mom of hannah 16, each day...
I'd be really interested in knowing what you find out about your son's lung nodules. As I have written before, my son has the same thing. They tend to wax and...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
Offline 
Send Email
