My son is on Neupogen - without it his ANC was usually around 200. His biggest problem was pseudomonas skin infections and sinus infections. Fortunately, it works very well for him, but it does take some time to figure out the proper dosing. There is a group that specializes in neutropenia - it is called the Severe Chronic International Neutropenia Registry (SCNIR) and they are located in Seattle. You or your doctor can contact the registry directly for info or they will direct you to one of the hems on the medical advisory board. They are very willing to give advice for managing chronic neutropenia. My son's hem is on the medical advisory board and she is in NJ (Dr. Bonilla). She answered many of my questions by phone before I even met her. She is now my son's primary doctor and is great. http://depts.washington.edu/registry
My son now gets IVIG every three weeks. He has not had any recent infections (which really weren't a problem as long as he was on Neupogen). His platelets have been in a safe range for the last 6 months or so, but I think that is also due to the decadron pulse he got around that time. His platelets are starting to decline so we are now contemplating Rituxan. I'd love to hear how others with Evans have tolerated Rituxan and if it helped with counts.
I agree with Amy that a full immune work up would be very helpful. We have consulted with several immunologists and are still trying to sort out my son's issues. We know his immune system is not right, but he doesn't fit any known disorders at this time. At least we know what some of his issues are and it helps us make decisions about various treatments. They are learning more about the immune system every day...
Susan
In a message dated 12/23/2008 6:48:24 P.M. Eastern Standard Time, rnm171@... writes:
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 (Nuetrophils) were 100. They have been hanging around these levels for the past few months. Rachel has been on immunosupprent drugs basically her whole life due to her liver transplant. She is being seen at CHOP (Children's Hospital of Philadelphia), Dr. Rand is her doctor there. She is being seen at Lehigh Valley Hospital-Muhlenberg in Bethlehem, PA at the Hematology/Oncology department for the past several years now. She was diagnosed with Evans after her hemoglobin dropped to 2 and her platelets went down to very low levels. At that time I think her WBC were OK. She had a very tough two years before thing stabilized. She went through IVIG, steroids and other cancer drugs to try to stop the immune system from attacking the blood/platelets. She then got an infection and was given some heavy duty antibiotics which shut down her kidneys. At that time everything kind of stopped, all her blood counts returned to normal, she was on dialysis for about six months and thing returned to almost normal there. She was doing well for almost a year after that then her WBC went down and has been there ever since and became worse. It appears that the nuepogen shots are not working and the Doctors said they are going to consult with Dr. Rand at CHOP to see what the next course of action should be. We are taking the P.U.S.H. (Pray Until Something Happens) to heart, thanks Rita. My husband and I will be praying for all, Merry Christmas. Thanks again Amy for your insight.
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...
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