Thursday, December 1, 2011

PID- Immune disorders

I now have a 3 year old boy and a 5 year old girl with PID-Primary Immune Deficiency. My kids do not make enough immunoglobulins to maintain normal levels within their immune systems. So they get sick more often, and for longer periods, they fatigue quicker and are succeptable to develpoing other autoimmune disorders and various disorders. They are infused with a blood product each week to help maintain normal levels.

My son seems to be doing well. But my daughter is having a whole new set of medical issues. Issues with her Red and white blood cells dropping,itchiness, urinary frequency, fatigue etc...

We see a a new bunch of specialist, so I will let you know the the meantime, any suggestions?

Reflux, colic and sleep issues!!!

It all started when our beautiful newborn girl arrived. I was elated! We had pink and white evrything! I had envisioned a pink world for us, full of hearts and flowers.....THAT DID NOT HAPPEN, AT ALL.

My motherhood bubble popped. It was not at all what I had envisioned. I had an emergency c-section, breastfeeding hurt like a b!!!!CH, I was up all night, my baby was not calm nad content and certainly not that chubby cute baby, but vomiting and screaming all night. She did not sleep for more than 45 min. at a time for almost 2 years. She lost weight, never smiled much, cried a lot, needed constant motion for at least 24 months, never napped etc.. it went on and on.

Dr. dismissed it as colic at first, until finally I drove us to the ER, in tears not knowing what to do anymore. What was wrong with me? Why was I not able to mother her `properly?` Why wasn`t MY child happy and thriving?

She was diagnosed with reflux, GERDS. Finally, a diagnoses and a treatment!!! But medication after medication didn`t help. A colonoscopy after many, many procedures. Eosinophillic colitis, a rare form of colitis was what she had as well. Ok, more treatment and diet modification. Better right?

Well after several medication trials, she did get a bit better. But then she started to talk, and told me she had tummy pain, headaches, muscle pain, joint pain, dizziness and that she was tired. And she was tired a lot. She could not keep up with the kids who were running around the park, or keep up with the others in swimming.

A new diagnoses again, Primary immune dificiency. More treatment-Major treatment actually. My daughter is infused subcutaneously with Vivaglobin, a immunoglobluin replacement. She actually did better for a while, almost normal. It was great, but my happiness and optimism I reserved. ANd for reason! A mother knows when something is not quite right. Now she is declining again, and we face yet again appointment after appointment, new medications, new tests and we wait.

Motherhood is not what I thought it would be. I love my kids, love those funny moments, love the hugs and kisses, love their personalities, love the way they think, love the looks of wonder and joy as they learn and discover.

But.......... I loath the pain, the fatigue, the irritability, the illness, the frailty that I witness daily, as I wonder what issues we will be facing next.