Hi Laurie,

 

My son, Aidan, was diagnosed with evans syndrome when he was 10 months old.  He also battled many other problems including chronic repiratory infections (often pnuemonia) for years.  He was diagnosed with a primary immune deficency when he was about 4.  An appointment with an immunologist is a perfect next step for Nik.  If you don't mind me asking, where are you from?  Have you heard of the immune deficiency foundation?  It is a fabulous patient organization that can provide you with a ton of information to have on hand before his appointment with an immunologist.  You can visit the website www.primaryimmune.org and order any materials (for free).  Or if you would like me to send you some materials (I volunteer for IDF) e-mail me your address in a private e-mail.  I definitely recommend reading the Patient and Family Handbook and IDF Clinical Care Guidelines.

 

Please feel free to ask me any questions and please keep us updated.

Amy Walsh mom to Aidan 7 years with combined immune deficiency and multiple autoimmune diseases (including evans)...successful BMT 6/4/07      

Laurie Gedz <nikgmom@...> wrote: