Pulmonology clinic

I was impressed with the clinic. The MA got us right back. The respiratory therapist came and got us and Sean had his PFT's. He really rocked and did a great job. The RT was so animated, she exhausted me. They even had crafts in the waiting room. Sean didn't even get a chance to play. I was happy about that.

We were only back in the room a few minutes before Dr. Chatfield came in. She had read all Sean's old records and X-rays. She said she thinks he has asthma and while she can't be 100% sure she wants to treat him aggressively for asthma for three months and then reassess. She said while the pneumonia in May with the one week admission was a scary pneumonia she thought the others looked more like inflammation from asthma. She also ordered a sweat chloride test, CBC, IgG, A, E and M. After the exam a different respiratory therapist came in and provided education about how to use the inhaler and spacer, then an RN came in and provided education about the asthma treatment plan. They covered all their education bases. We went to get blood drawn. The Child life specialist was standing in the room. I asked her if it was her job to distract Sean and she said yes it is. "Sean do you want to watch TV or look at these pictures?" Sean said "I want to watch them stick the needle in me and take my blood" and he did. He said "that didn't hurt." The child life specialist told him he could get a prize and he asked if the kids who cried got prizes too.

We stopped at Target to get his $200 worth of inhalers (yes that is with insurance).

Early Thursday my phone rang but I didn't answer it. A little while later I checked my messages and it was Dr. Chatfield saying she wanted to talk to me about Sean's labs and she needed to order some more labs. That stressed me out. Our primary care doctor never calls us with labs. Heck, I needed my ovary removed and was two weeks out of surgery before his office called to tell me my ultrasound was abnormal. I called the clinic and left messages and it was five hours before the nurse got back with me.

Sean doesn't have any IgA in his blood. IgA is part of the immune system. This explains why when everyone else gets a cold Sean gets pneumonia. We have to go in next week for the sweat chloride test and some more labs. Then we will probably be referred to an immunologist.

Dr Chatfield wanted us to know that Sean will need a medical alert bracelet. If you don't have IgA and you need a blood transfusion if the transfused blood hasn't been stripped of IgA it can cause anaphylaxis. Other than staying away from sick people and aggressively treating infection there is no other treatment. It is genetic.

IgA deficiency is caused by faulty white blood cells called B cells or B lymphocytes. While patients have normal numbers of B cells, these cells do not mature into normal IgA-producing cells. Scientists do not know the exact cause or causes for these immature B cells. Sometimes clusters of cases occur in families. People with IgA-deficiency are more likely than the general population to be related to someone with combined variable immunodeficiency, another form of immune deficiency. Researchers are trying to find the genes that cause IgA deficiency on the involved chromosomes.

I was really hoping we could be done with the medical post for the year but apparently that's not happening. I am happy it's nothing worse. I was really worried when I got the message.