Thursday, May 31, 2012

My Son-shine - A journey into the world of Primary Immunodeficiency Diseases

Today it is hitting me that I am part of another community I never asked to be in. My beautiful son-shine looks absolutely perfect but he is not. Not medically, anyway. He has Bruton's which is a Primary Immunodeficiency Disease (PIDD). I still have to look that up to make sure I’m writing it correctly. As of right now, half of his immune system is missing. His B-cells are pretty much non-existent which means his body does not produce antigens that fight off viruses and bacteria. What would be a slight cold to you and me could mean pneumonia to him.

It all started with feeding issues. He would be hungry but then would cry, arch, turn away from the bottle when I would try to feed him. There was a lot of spitting up & vomiting and a lot of feedings because he would take in so little each time that he would be hungry very soon. At first glance, the GI thought my 3 month old was suffering from reflux but when a change to his formula showed no improvement and there was a serious weight loss GI ordered us to the ER to make sure there were no obstructions or other internal issues. The ER doc noticed his breathing was kind of fast and x-rays were kind of cloudy but his lungs sounded so clear that pneumonia was not a thought in anybody’s head. Well, 2 ER visits, a 5-day stay in NICU, 2 more ER visits, another hospitalization that lasted a little over 3 weeks and yet another ER visit later we finally got the confirmed diagnosis of Bruton’s; or Agammaglobulinemia; or X-linked Ag; or BTK. They are all the same and half of them are not even recognized by my spell check. So here I am, a member of the primary immune deficiency community. Oh, Holland, why do you hunt me down while Italy evades me

So now I have to be my son’s nurse along with my daughter's. Every week he needs two infusions of a medicine that contains the antigens his body does not naturally produce. Yes, I have to stick him with a needle. Every week.
This will be a life-long issue for him. There is no cure as of yet.
2 kids. 2 chronic conditions.