Friday, January 7, 2011

Trying Not to Worry

My Dad used to always say, “We’ll cross that bridge when we come to it.” I heard myself repeat those familiar words to Alyssa on Wednesday.

We’d had a follow-up visit with Alyssa’s endocrinologist earlier in the afternoon. It didn’t go the way either of us anticipated. After enduring the growth hormone test in August, Alyssa is leery about appointments with this particular doctor. Our family has dealt with our share of doctors and I must admit, he’s not my favorite. Communication skills are not his forte.

As Alyssa jumped out of the car, I assured her that “this should be no big deal.” Based on what the doctor had told us after the test, I didn’t have any reason to believe that this visit would be anything more than a simple a review of those results and a couple of measurements. I certainly didn’t expect anything new.

First, I was lightly chastised for not following up sooner. I explained that his instructions had been to come around her birthday and yes, we had rescheduled one time. And he is hard to get in to. I was beginning to feel defensive. After all, the last I’d heard was good news so when Alyssa’s school program conflicted with the first appointment, I didn’t think it was such a neglectful thing to postpone for a month.

Next, I was bluntly told that her growth has been very poor over the last couple of months.

Then, I was asked if I’d seen the gastroenterologist. Gulp. I forgot about that! But then I felt defensive all over again. Yes, he had mentioned, over a year ago when she had all those blood tests, that the celiac screening had come back…I believe the word he used was, equivocal. But, he said they would do another blood screening at the same time of the growth hormone test.
When the only result I heard was that “she passed” I hadn’t given a second thought to the celiac possibility. So no, I hadn’t seen a gastroenterologist. I had no idea that the second blood test had produced results that are “over the threshold” for a normal celiac screening.

Based on the two blood tests combined with her poor growth, the doctor has “a strong suspicion” that celiac is the culprit. He recommended we see the GI and have a biopsy.

Then he told me that he had a question about her cortisol level. It also showed an abnormal level that day back in August. What? What is cortisol? Why haven’t I heard this one before? I couldn’t get a straight answer to any of my questions and every time I tried to clarify, I’d end up just as confused. All I clearly understood was that he wanted to inject Alyssa with cortisol, wait an hour and then do a blood draw. I told him I was very tight on time so if we needed to wait an hour in between the shot and the labs, then we needed to get on it right away.

He left the room to get the nurse to start the injection while I apologized to Alyssa.

“I’m so sorry, Babe. I had no idea they’d need to do this to you today.”

“It’s OK.” she said, as she removed her silly bands and pushed up her sleeve.

The doctor returned and we continued our awkward twenty-questions-no-great-answers game. In the end, the nurse got too busy to do the test in a timely manner and I didn’t want to make Alyssa repeat the test if the results weren’t going to be accurate in our now very restricted timeframe, so it will be administered when we return to see the GI on the 18th of this month.

Alyssa took it all in stride as only she can do. But she did immediately begin to worry about having to give up her favorite food in all the world: noodles with clam sauce. She asked if I could make it right away just in case. As the night wore on, she was full of questions about what she will and won’t be able to eat should she be diagnosed with celiac disease. That’s when my dad's old advice came to mind, “We won’t worry about it yet, we’ll cross that bridge when we come to it.”

But I’d be lying if I didn’t admit that I’ve already been mentally traversing the bridge while imaging a treacherous crossing. I went to the grocery store yesterday and couldn’t help but notice the expense of all the gluten-free products. I had to keep reminding myself that I didn’t need to read every label yet. Instead I loaded my cart with all of Alyssa’s gluten-filled favorites while I hoped with all my heart that this wasn’t the last she’d see of them in her lifetime.

We had noodles with clam sauce and rolls for dinner.


Karen said...

Gluten free noodles are OK. And with your skills you can adjust if you need to. It might mean more pans for Jon, if you cook one way for her and one for the rest of you, but doable.

Holly said...

Sorry your appt. didn't go so well and I hope you get answers soon.

Erin said...

So sad. And I'm sorry to hear that your doc is such a bummer. I would seriously try to find someone else if I were you.

If it turns out to be true, I have a friend here who is celiac and she makes really great food. I can get some recipes for you. After I had Clara she brought us dinner that included breaded orange chicken and brownies and I couldn't tell the difference!

SuburbiaMom said...

Wow. Good luck with everything. At least if it is celiac you know what to watch out for...

Amy Jones said...

So sorry, Tara! I hope you've been giving her all her favorites the last few days!

Who knows...maybe it will turn out to be something completely different and thoroughly benign.

Crossing fingers!

B.Bird said...

Tara, You're strength and encouragement to your daughter brought tears to my eyes. Don't worry to much, even if it is celiac. We had a missionary serving here with it and it is definitely do able. We also had a family in our branch with several people in the family with the same issue and they had adapted well. Her food at the potlucks always tasted great.

Lucy said...

Bummer news but as with everything that comes your guys way, I'm sure you'll not just cross that bridge but you'll leap over that hurdle. I have to say, should Alyssa require a gluten-free diet, you will probably feel overwhelmed at first and then surprised by how adaptable your regular diet is AND by how Celiac friendly the world is now. Sammy now is totally gluten-free and there are definitely hard days. Like today in primary when the sharing time person brought bread and honey as part of her lesson. But, in the end, it's just food. and he chooses not to eat it because not eating it makes him feel better. It'll be interesting to see how Alyssa does if she does have Celiac because she doesn't get sick, right? Crazy.

Anyways...thinking of you guys!!

Chad said...

Doggone it, that is frustrating. We are hoping and praying for the best and cursing that annoying doctor. Chins up!

The Littles said...

bless her heart! so they're saying she's not growing because of celiac disease, possibly? interesting... my sister-in-law has celiac and she gets SO SICK with even the tiniest fleck of gluten. it's a blessing alyssa doesn't experience that! let me know if you want recipes/where to order flour/which restaurants support gluten free etc. if she is diagnosed with celiac disease. best advice given by chad above: chins up! we'll keep her in our prayers