Thursday, September 30, 2010

Season of the Neb

The season of the handy dandy nebulizer, aka flu/cold season, has started and is in full force. We were forced to dust it off the other night after Emma came down with a cold and it really triggered her asthma. It's a little disappointing, since we were finally getting better control with her asthma. Here's to less time at school, church and being outside!

Sunday, September 12, 2010

To screen or not to screen?

SCREEN. Since Emma was a baby, her primary physician has followed the recommended guidelines for a baby/child with Down syndrome. A lot of it has involved screenings for things she is high risk for developing-like leukemia, hypothyroidism, eye problems, atlantoaxial instablility and celiac disease. I've always had mixed feelings about these screenings. Who would like it when their child is being screened for leukemia? This summer we switched to a new Endocrinologist, this post I mentioned a not-so fun time with the old one. Anyway, the new doc wanted to run a screening on her thyroid and check for celiac disease. I thought it was unnecessary and told him so. He gently replied that she needed checked every year(the last endo said she didn't-hmmm) and that he was ordering a more in depth screening for celiac. I gave the go ahead, but procrastinated taking her in for the blood work.

I finally took her, and didn't think much of it because I didn't think I was seeing symptoms. I missed a call from the endo office less than 2 weeks later, they mentioned they got the results from her labs in and wanted to discuss them with me. I wanted to barf, they only do that when something is wrong. I called in and got told that her thyroid was normal, but they thought she had celiac disease. Her endo sure showed me! They faxed her labs to the GI clinic at Primary's, they do what's called fast track for celiac. If you spend time at Primary's, then you know scheduling an appointment will be a 2-3 month wait. With the fast track, however, they get them in for a biopsy(the only way to confirm celiac), right away if the numbers are bad. When the nurse practitioner called less than 24 hours later to schedule her biopsy right away, I knew her numbers must have been bad. I've recently found out what her blood work came in at. Her endo told me that a normal blood screen comes is 3 or below and only measures to 100. All they know is that hers was greater than 100 because it didn't even register-it sounded too familiar. We did the biopsy and have since gotten confirmation that she does have celiac disease. Her small intestine has damage, she has a high level of antibodies, but is asymptomatic-no symptoms. After learning more about this disease and how hard it can be to get a diagnosis, I'm so grateful we know and caught this early. Her last blood screening was almost exactly a year ago, so this has developed in the last year. I like to think, right now, that maybe this has something to do with the back to back viral infections she had this past winter. She had a rough year, the worst back to back cycle she's ever had. This is no joke, the longest she went all fall/winter/spring without an ongoing viral infection was 3 days. Who knows if the celiac played a roll in this or not(probably not)but I would love an explanation for why she got sick nonstop. At one point, I even took her to the doctor to see if she needed screened for leukemia. Or maybe it could explain why she had problems sleeping this past year.

I would be lying if I said I was fine about it. I don't care if there are a million gluten free products, it's still hard committing to another auto-immune disease that lasts a lifetime, even more so with all of her other needs. I told my sister that things will never be the same-again. She helped me realize that Emma joining our family already changed that. She's right, but because of that, I hold on with a death grip to the little remaining normalcy. Letting go of another piece of that is proving to be extremely difficult. We'll be fine though, I'm not scared by this-just tired. We are in the process of segregating the gluten foods from the gluten free foods and buying things for our new lifestyle. I am going to have to relearn carb counts with her new food, and the way it affects her sugars, but I feel like the experience with her Diabetes is helping me adjust easily enough to her having celiac disease.

Screen-you never know what's going to show up. Better to find out now than down the road. Of the few possible problems I mentioned above, we have already caught 2 in Em through her routine screenings. Let's hope for no more.......