Lizzie's Journey

Round And Round We Go

Today's immunology visit did not go quite as I had expected. I was pretty confident that all the results would come back normal, so when they didn't I was a little blindsided. Too be honest, I'm still not sure what to think, but mostly because no one has told me what any of it means.

Unfortunately, due to a scheduling problem, the doctor wasn't even there today. Needless to say, I was seriously annoyed that I had just driven over an hour to discuss test results with a doctor that wasn't even there, but for the sake of being polite, I will keep those thoughts in my head. :) Instead I saw the nurse practitioner, and as nice as she was, she really didn't have many answers about the tests.

She showed me the test results, and explained how some of the results came back lower than expected. I expected there to be one or two items off, but was surprised when there a quite a few low numbers, some of them significant and some only slightly lowered, with about 25% of the numbers below normal - which also means 75% were normal... :) see that silver lining? lol Apparently low is better than high, which is good, but I still don't know what it means, and she either didn't know, or didn't want to discuss it with me since she wasn't our doctor. She called the doctor who said that he did want to see us, and that we needed to do some additional lab work. He had mentioned from the beginning that we might be doing more testing, so I'm not sure if it is because of the results or in addition to them.

After she spoke again with the doctor, she said he wanted to run some new blood work today to test her titers, then give her 2 vaccines, and re-test her titers after 2 weeks. We worked out a compromise so that we would do labs today, and then I could have her pediatrician give her the vax'es on Thurs. Then we would come back for test results and re-testing in 2 weeks. This way, I have some time to research, and it also gives me a chance to discuss it with my pediatrician before we make a decision. We also see our urologist Thurs morning, which is a bonus, so I can discuss it with him as well. As many of you know, I am not a huge fan of vaccines, and because of Lizzie's constant illnesses the first year, we are on a delayed vaccination schedule. So you can imagine my lack of enthusiasm for this method of testing. I will absolutely do it if it needs to be done, but I can't take the word of one doctor that I can't even get in to see... if you know what I mean. I need to know what giving a vaccine to her if she is immunocompromised might mean. I need to at the very least understand it, and at the most just be ok with it.

So now it is time for lots of research, and time is a big factor... which stinks. I hate to be rushed. If any of you have done any medical research online, you know that Dr. Google is full of gloom and doom, and you have to be careful how much you read. It takes time to navigate through it all without being totally overwhelmed, especially when you are as clueless about a subject as I am this one. I just didn't expect to be here. And now that I am, I have some catching up to do.

At this point, we really know nothing. We don't know what the tests mean, or how concerned we should be about them. She's only 2, so her immune system is still developing and may still make some adjustments (especially now that we are off the abx) or we could be facing something more serious. We just don't know right now, and man that is hard. I think that is always the hardest part for me.... the not knowing. My imagination is sometimes much harder to live with than the truth. I long for the day that we can say X is what is wrong with Lizzie, but I also have a lot of fear about what X will be or what it will mean for her future.

The good news is that she is still growing and developing well, and that gives me all the hope in the world. She is a healthy, happy little girl, so I still feel really confident that in the end this will come out with positive results. Maybe it is just God's way of teaching me a little patience ;)

Labels: immunity testing, immunology, Update