Tuesday, March 31, 2009
Is it Coincidence?
Yesterday, my sweet friend was asking me if I know anything about PI (Primary Immunodeficiency). Of course, I haven't heard anything about it and got too busy to even mention it to Paul Sr. Last night, he came home with information from his brother on PI. Is it coincidence? I read the disease description and signs and symptoms and immediately felt confirmed in my heart "THIS HAS TO BE IT". I don't want to jump to conclusions, however, after reading the information from INFO4PI.ORG, it explains literally EVERYTHING that has been going on with Paul. It said the disorder first presents itself as recurrent bacterial infection at infancy, then early childhood, and during puberty and then much later in life. Paul had chronic ear infections as a baby and toddler with finally getting tubes (twice) to correct the problem. He still doesn't like to get in a swimming pool because he knows he will get an infection. He gets repeated bronchitis during fall and winter months every year and this last year is when the Dr. put him on Singular to get him through the winter. He had at least 7 bouts of strep last year back to back with only temporary relief on the meds. This year he has been complaining of "his whole body hurting" but specifically is knee and ankles. He has EVERY symptom of the gastrointestinal issues since this summer but EVERY DAY since December 19th. Some patients can develop auto antibodies which can attack and destroy white or red blood cells. The gastrointestinal problems can impair normal growth and weight loss which has already happened. The big one that really put it together in my mind was the fact that most of these people are unable to absorb sugars (Fructose) and/or fats! Other patients develop overgrowth of intestinal lymphoid tissues. The reason: B-cell defects. We should have gone to the geneticist. Complications include recurrent infections, damage to heart, nervous system (hmmm, this might explain the weird neurological symptoms of dizziness and numbness in the legs) or digestive system (which we already know has been the worst), slowed growth or weight loss, and increased risk of cancer. I did a little more research before bed and haven't been able to sleep all night. This would answer all of the problems that are such a mystery. Treatment would include intravenous gammaglobulin doses every 3-4 weeks. In other words, a healthy donor's blood to restore normal antibody levels (which does not usually replace the antibody deficiency but helps with symptoms). The other option may be a bone marrow transplant or continued use of antibiotics to fight infections. While he is symptomatic in every area of this disease, these would have been serious red flags to the doctors, right? The Dr. isn't really concerned about the low white blood cell count, the chronic infections, and the stomach problems and has never had a case of Fructose Intolerant to really know what is "normal" for the disease. I am going to put a call into her tomorrow to rehash all of his blood counts to see if he had abnormal levels of immunoglobulin (infection fighting proteins) because abnormal numbers of certain cells can indicate an immune system defect. I don't want to jump to conclusions. We know his white blood cell count dropped in half from January 30th (6.1) to mid March (3.2) but if she is not concerned; then in my mind that is a good thing. God answers prayers in mysterious ways. I will ask that you please pray for answers. If it is indeed PI, then I will just ask for COMPLETE HEALING. Okay, I'll beg.
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