I hate making decisions.
Our follow-up appointment with the pediatric gastroenterologist (GI doc) at Duke was this week, and it was pretty much what we expected: bloodwork looks good & doesn't seem to show any malabsorption or deficiency problems, Caroline is still growing, gaining weight, & thriving, the hair loss may not be connected to the foul, loose stools, etc. etc. While it is reassuring to hear she's checking out as healthy and we're doing everything right, it gets us no closer to answering all of our questions.
The only way to KNOW something for sure in the GI world is to do an upper endoscopy & colonoscopy (under full anesthesia). It would be a definitive answer as to whether she has celiac disease (people with alopecia have a much higher likelihood of having celiac genetically), as well as show other intestinal conditions/problems such as carbohydrate malabsorption syndromes, for example. It's a relatively quick, easy, & safe procedure-- the whole procedure is less than an hour long & she won't be in any pain afterwards, but still. No parent wants to make the decision for their 2 yr. old to "go under" when it is not absolutely necessary. I can't imagine watching my daughter being rolled away sedated on a hospital bed! (If this thought makes me immediately sick to my stomach, I wonder how the God of all the universe watched as His Son was killed?) The doc said she's on the fence about whether she would recommend we do this or not. So basically it is up to us. (I just wish things were a little more clear-cut sometimes! Would someone please just tell me what to do & I'll do it!)
The last time we were given the option to do this endoscopy (with a different gastro doc), we opted to go the gluten free route to see if that would resolve some of the problems. It did, at least some of them. The frequency became normal (before it had been 3+ times a day), but the "quality" only improved for a week before things turned south again. Instead of subjecting her to an invasive procedure at that time, we felt much better about actually doing something to try to treat the problem.
And here we are. 9 months later. And Lord knows, I've tried everything. I thought I knew what was happening in her body. But now I'm waving the white flag. I give up. I don't know. I don't know if the hairloss is ONLY alopecia (an autoimmune condition where the body randomly decides to attack its own hair follicles & regrowth is totally unpredictable for every individual, but they are otherwise completely healthy) or if it's alopecia CAUSED by something else-- a deficiency or something like celiac disease, for example.
It's said that the worst thing about alopecia is the acceptance of it. That can't be more true. As a parent, I am tortured with the "why did this happen?" question almost non-stop. Is there something underlying that I'm missing??? And while there are more options to exhaust, I feel I need to exhaust them. THEN, once other medical possibilities are ruled out, I know our pain will take on a whole different kind of grieving to just STOP. And cry. And know that I've done everything I can possibly do for my child.
But now is not that time. I'm still in battle mode for my kid.
I mentioned the Mayo possibility to you guys last time, and for several various reasons, right now we are looking to work through our options with Duke (both gastroenterology & dermatology) before we reconsider that option.
And in the midst of this battle, the Lord continues to shower us with grace and provisions. My worship team bought me a gift certificate to a SPA! (never been to one, but oh, I can't think of anything better...) Our Lynchburg RUF students secretly collected Christmas money for our family and gave us a check of almost $300 towards our expenses!!! (COLLEGE students, can ya believe it?? he he) We know there are so many people praying for us near and afar, and we are so grateful. He has not abandoned us in the least. As we have struggled along the path, He has given us just what we need when we need it. Plus more. Grace, grace.
So we've got this decision to make. Pray that He'll continue to lead us. We'll keep you posted.