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.......


Garn said...

we have so much to learn...glad to have your help and example!

Jolley's said...

You are seriously an inspiration Lisa! You always have such a great "can-do" attitude even though I know you must be feeling so overwhelmed.

I have a really good friend of mine that just moved from NC to Utah who has two boys with Celiac. I'm sure you have contacts already, but if you don't I really think you two would hit it off. Let me know if you want me to have her call you. :)

Wish I was there to bring you some Kneaders!


mrsmckracken said...

Thanks for your comment on my blog! I feel for you...celiac's is a lot at first to get used to and it looks like you have your hands pretty full as it is. I took my son for his follow-up after a blood screen, too, and we are biopsy-ing on Tuesday. It is definitely worth the time to gain the knowledge. My advice for now is to take it one day at a time. It WILL get easier, but for now just make it through one meal at a time and it will get easier from there. Great job hanging in there!
Margo from Off the Wheaten Path

S@r@H kLoEr said...

WOW i so admire you. We struggle daily with things too, but it seems like nothing compared to what you all have to deal with. You are all such an inspiration to so many. We had Brooklyn tested for celiac disease at our last appointment, when the negative results came back i had mixed feelings. First of all grateful that we didn't have to deal with another obstacle, and second disappointment that we have yet to pin down what is making her have the problems that she is having. So now we will have to move on to more tests. :( I think about you constantly, wishing that I had your strength and fight. Wish that we lived closer so that I had someone to talk to. But for now I will follow you on facebook and here, and continue to be in Awe about how wonderful you all are. :) take care, and be sure and tell Emma happy birthday from us :)

Christine said...

I'm a writer working on an article on CD and DS. I would love to chat, particularly about screening guidelines for CD. If you can help please email --