Immunology Testing
So yesterday was our first visit with immunology. We're not convinced that Lizzie has an immunity problem, but the doctors have decided that we need to rule out immunity issues before moving forward. She technically meets the requirements to be at significant risk for Primary Immunity Defficiency (PID), which include multiple infections, resistant infections that have required hospitalization (as well as 2 pic lines) and recurrent chronic thrush.
While all those factors would generally point you in the direction of PID, there are a lot of factors that would lead you the opposite way as well. The big one being that she is growing and developing so well. She's never had failure to thrive and even through all of her surgeries and infections, she has continued to stay in the top 75-80% on the growth charts. Her infections have been well controlled and relatively easy to treat, and her anatomical defects could also be responsible for many of her problems. As for the thrush, I'm at a loss there, but the constant antibiotics for two years could still be playing a role in her yeast problems.
We were unable to see the immunologist that we had hoped for at the Children's Hospital, so we had to settle for an allergy/asthma specialist that also does initial immunity testing. Too be honest, I was a little concerned about not seeing an immunologist, but our peds assured us that he could run the initial testing needed and we could move forward from there. If the tests come back with abnormal results, we can see another doctor if we need to.
So yesterday was the big day, and most of my fears about not seeing an immunologist were validated. :( The nurse started asking a few allergy related questions, and I let her know that allergies were not a significant issue. She was obviously confused so I told her we were there for immunity testing. She simply said, the doctor will be with you in a minute and walked out. A few minutes later, the doctor came in, asked 2-3 questions and began reading the chart....you know the one he has had for a few weeks... the one explaining why we were there. Grrrrrrr....... A few minutes later he says: well lets see if we have what we need to get the blood work done. They asked how I thought she would do for the blood draw, and I explained that she was used to blood draws and that it would really not be an issue for her. Just tell her that the butterfly (needle) would bite and it would hurt for a minute then afterwards she could have a sucker. We've been down this road a time or two ya know?
Well, apparently they were not equipped and seemed uncomfortable, which made me uncomfortable and we decided that we should go to the lab and have it drawn. The doctor agreed and explained that they would take some blood, check for immunity issues and then meet with us in 2 weeks for the results. In other words, I spent an hour for them to tell me NOTHING, ask NOTHING, and do NOTHING. They were completely unprepared despite the referral. All I got was the "she looks really healthy, so I don't expect there to be any problems, so that's good news" comment before we left. Really? Is that your expert opinion? You don't think we've heard that before? We heard it before her first surgery, before her first pic line, her second surgery, her MRI...... the list goes on. What a completely ridiculous thing to say! It's not like we showed up just for fun. We've had two seperate doctors recommend this as our next step.
We finally made it to the lab (late... thanks to terrible directions from the receptionist) and of course Lizzie did great. Not a tear in site. The butterfly bit her, they took 5 viles of blood, she got a sucker. What an amazing little trooper! The nurse was also fabulous!
So now we just wait 2 weeks to see the doctor again. I can hardly wait (yeah, that's sarcasm you're hearing). Maybe he'll have some more wonderful words of wisdom. I hope that he is right, and that everything is fine with her immunity system, but only time will tell. Waiting for these results is not nearly as stressful as some of the others have been, but maybe that's because we're not expecting much from this testing, at least we hope not anyway.
Labels: immunity testing, immunology, infection, thrush, vur
