Denise and Scott,

 

I am so sorry that your daughter has been diagnosed with Evans syndrome.  My son Aidan was diagnosed with autoimmune hemolytic anemia at 10 months old and with evans syndrome at 15 months old.  So I have once been where you are now.  Aidan is now seven years old.  It sounds like your daughter's doctor has taken the right steps to test for an underlying immune disorder.  When Aidan was diagnosed there was even less known about the immune system than there is now.  There have been many strides made in immunology in the past 5 to 10 years, and it has just been in the past few years that doctors admit evans syndrome is really NOT a disease in itself, rather a signal for something much bigger going on in the immune system.

 

If you are willing to travel for a second opinion, I recommend an immunologist at Cincinnati Children's hospital in Ohio.  We are from Illinois and traveled there for my son's care.  Dr. Bleesing at Cinci and doctors at NIH played the biggest role in diagnosing Aidan with his underlying combined immune deficiency.  If traveling is not an option right now, the Immune Deficiency Foundation can give you a list of immunologists in your area.  They also have a great patient handbook that gives information on all the different primary immune disorders.

 

Since your daughter recieves IVIG, you might also want to check out I.G. Living magazine (it is a free publication) all about IVIG and the people who recieve it.

 

Many immune disorders are genetic, so if you believe your son's autism is linked to his immune system, as well as your daughter's evans syndrome...the two could be a result of the same underlying disorder.

 

You asked what others have done to treat a low ANC.  Aidan currently recieves sub-q shots of neupogen (GCSF) three times a week to keep his ANC above 500.  Is your daughter taking prophylactics while her ANC and white count are low?  Some doctors will prescribe diflucan to prevent fungal infections and bactrim or pentamadine to help prevent pneumonia.

 

Has your daughter been given steroids or other immune suppression for her ITP?  If she is only being treated with IVIG currently, I would recommend having her immune system tested ASAP before the need for other drugs becomes necessary.  Once starting immune suppression therapy, it is hard for an immunologist to determine the difference between a primary immune disorder and one secondary to the drugs.

 

I hope some of this information will be helpful to you.  Good luck!

 

Amy Walsh

mom to Aidan 7 years old (evans and Combined immune deficiency, BMT 6/07)

Nolan 4, healthy

Liam 1, healthy donor