Immune Deficiencies

When You Need Rainbows and Unicorns

It has been a hard couple of months. My daughter got disappointing results on the Sensory Integration and Praxis Test, despite having been in occupational therapy for four years. According to her most recent scope, she probably has some other food allergies lurking, causing reactions in her GI tract. We're having to go through medical review again so she can continue her immunoglobulin replacement therapy for [...]

Making the Decision to Homeschool

Like I mentioned in my previous post about virtual schools, it just wasn’t an option that was ever on our radar.  My husband and I both work full time and neither of us had any significant challenges in the public school system so we just assumed that our kids would attend as well.  Ah the assumptions we make before we become special needs parents… My [...]

When Primary Immune Deficiencies Affect Your Student at School

Ironically, since the recent posts on Primary Immune Deficiency, we have discovered that our youngest son's preschool class has a student diagnosed with PID.  Now this is something that effects everyone.  Should I be on the fence of whether my son is 'possibly' coming down with something or is just tired and cranky, I am asked to keep my child home.  Could you imagine how [...]

Primary Immune Deficiency – 5 Things to Remember and How You Can Help

My daughter is 12 years old and was diagnosed with a primary immune deficiency disorder when she was four years old.  She had been sick from birth, had picked up a wide range of illnesses ranging from an encounter with a child in the ER who had just been adopted in China to diseases she was vaccinated against (Remember those antibodies I previous discussed… they [...]

By | 2013-04-24T09:00:51+00:00 April 24th, 2013|Categories: Immune Deficiencies|Tags: , , |0 Comments

Understanding Primary Immunodeficiency for PI Awareness Month

April, among other things, is Primary Immunodeficiency (PI) Awareness Month. Although often represented by the blue ribbon, the PIDD community is also one of the “zebra” disorders.  Doctors usually learn in their first year of medical school that when they hear hoof beats, they should think horses, not zebras.  Zebra disorder is a slang reference to disorders that are uncommon or rare, but share symptoms [...]

Christmas 2000 – When Special Happens at Christmas

Christmas 2000---it was my first Christmas as a new mother and I had visions of the perfect holiday for my beautiful 3 month old daughter. I’m not sure how I thought she would react, but I just knew it would be a magical experience and the beginning of a long line of family traditions. Unfortunately a few weeks before the holiday, she contracted RSV.  This [...]

Theories in Immunology and Other "Quack" Stuff

A hard one to explain, this one will be - stick with me. Theories forming in my head. Both B and J share the same GI (Gastroenterologist) who suggested an allergist (our 2nd) for B that is trained in immunology. I’m happy. I’m happy not only for the referral, because we’ll figure out if there’s any major concerns with B’s GI issues beyond allergies (there’s [...]