Our family is growing in many ways... Growing in numbers, knowledge, parenting skills, growing in love, in our faith, growing our culinary skills (if you can call it that), growing without gluten (some of us), growing green...........

Sunday, February 7, 2010

Testing, testing...

Ok, so when I wrote the last post about all this gluten stuff with Aiden, we were waiting on a referral to the pediatric gastroenterologist at Duke Children's Hospital. I called our family dr's office on Monday, knowing our provider was not in that day and wouldn't see the request until Tuesday. So, it came as quite a surprise when I got a phone call at 8am on Tuesday morning, before the office was technically open. We already had an appointment with the specialist THAT THURSDAY...two days away! That never happens...getting in that quickly. We even got the specific ped GI that we requested (per a recommendation from a friend who works with these providers, saying this guy was "the best" of the department). I was shocked. But also a bit concerned...did we really need to go in just yet? I wanted to talk with the nurse or doctor before actually going in for an appointment.

And...surprise again! I got to speak with a nurse that same day. The visit wouldn't be pointless even if testing was put off, she said. She also relieved me quite a bit when she said Aiden only needed to consume the equivalent of a graham cracker a day to get enough gluten for accurate test results. Aiden would at least eat some cheerios each day, and that's what I gave him to snack on when we were running around, so he should have gotten enough. She also said some doctors would test after being on gluten for two weeks, some waited four.

Thursday rolled around, and we got another call. Instead of waiting until the afternoon, could we come in as soon as possible? Some spots had opened up. So...off we went as soon as I got Camden off to school, picking up Ryan on the way. We left the house at 10am. We returned home that afternoon after 3pm. We were in the exam room for three hours, at least. The only stop was a very quick lunch after leaving the hospital. It was a long day, needless to say.

But that's to be expected there. We always have to wait a long time when we see a specialist at Duke. The upside...when it's our turn, the doctor gives us plenty of time...taking a good history, getting all the facts and hearing us out. You may spend time waiting, but that's a small price for great care. Plus, this time, during our wait, my friend Melissa stopped by to chat with us, too.

So....after talking with the doctor for quite a while and filling him in on...basically everything Aiden has experienced since he was born (seriously, they do a good job), he told us what we kind of knew. This could be celiac. Could be a gluten sensitivity. Could be a wheat allergy. All of those are completely different from each other. Also...this could be something else altogether. We explained how we were concerned about Aiden's slow growth (going from above the 75th%tile at birth to the 30th at one year and now in the 14th at 18 months...all the while being a VERY good eater), his tendency to get sick easily and stay sick for a long time (despite all the protective factors), and all the other "symptoms" that could mean something or could mean nothing at all. He agreed. And while he said the slow growth was something to keep an eye on, he wasn't too concerned because at least Aiden wasn't LOSING weight; it's possible he's also still "settling into" his normal growth pattern (is this something they're all supposed to say to help keep parents from worrying too much? Ha.). Anyway, after all this talking and whatnot, he decides to go on with the blood work. I was a bit hesitant because Aiden had only been "on" gluten for 12 days at that point, but the doctor thought it was fine, especially with Aiden being younger. And hey...going out there is not a quick trip (or cheap), so we went on with it.

Aiden was quite the trooper. They took SEVEN vials of blood. Wow. We didn't expect that. Aiden did cry at first, but after a couple vials, he was fine...just put his head up against Mama and watched where the blood was being removed from his arm. (I wonder how this will affect his sudden separation and stranger anxiety that he has been exhibiting. This certainly reinforces that strangers aren't necessarily the nicest people out there, huh?) He did pretty well, though. He later cried more after whacking his face into the corner of my glasses...

So now...now we wait. The results should be in within the next few days. If the results are positive for celiac, we go in for a biopsy to confirm. I'm really trying not to even think about that yet. We didn't even ask about the process when we were talking with the doctor. No point.

But if the results are negative... I'm not sure what that means. It means this might be ruled out. (But we will worry, of course, that they tested too soon.) There are many other possibilities, if we get negative results, though. That's not something we're really excited to think about, either.

I'm trying to just tell myself...whatever will be, will be. It doesn't help to wonder and worry. It was easier yesterday. Harder today. Today Aiden showed more symptoms, especially after he ate some more wheat yesterday than he had been. I think we've figured out that Aiden doesn't really care for white bread. He's always eaten wheat bread. We got a fabulous bread machine for Christmas and have been using that instead of buying bread...but we've been making white bread because in order to make wheat, we would need to buy extra gluten to use with it. But we don't want to buy all these extra ingredients and then find out that he does have celiac and needs to avoid them. We happened to buy a loaf of wheat bread the other day, and Aiden suddenly likes bread again. So funny. Camden was the same way. I always gave him wheat bread, and the first time he was given white bread at someone's house, he looked at it like it was the strangest thing ever. Ok..off topic. Anyway, this explains why he hasn't been wanting much bread...the bread, biscuits, ect have all been white.

I'm more worried about the results being accurate and trusting that they are accurate than anything else. Feel free to pray that they are accurate and that we can feel at ease with what we are told. Right now, that's actually our biggest concern. Thank you for all the kind comments and all the prayers. We really do appreciate it all. It helps having that support and knowing so many people care about our little guy.

1 comment:

Becky said...

Good luck good luck. Sounds like the dr is probably pretty confident since he ordered the test even knowing Aiden hadn't been eating it that long. Hopefully you'll get solid answers. Poor little guy, SEVEN viles, I don't even think I would handle it that well.