Thursday, August 6, 2009

Change #2--Food, redefined

If you've read this blog for any length of time, you know that when Oli joined our family in February of 2008, we found ourselves thrust into new territory on many levels. One of them that I don't often mention is FOOD.

Priorities had to be set when Oliver came. Among the many ailments he suffered from: constant diarrhea, chronic ear infections, a wet cough, perpetual green runny nose, no growth, developmental delays, not walking and projectile vomiting. The poor boy--at 14 months of age-- had suffered from more infections (particularly in his ears) than you could shake a stick at. I knew this, and was prepared to deal with such. After all, Jo had been through a year of nasty ear infections beginning right after her weaning, and I had learned a trick or two. I wasn't even shocked when our pediatrician put down her otoscope during his intake exam and told me, "This poor kid's ears a full of what looks like snot." Yum! I thought. How visual and yet ... disturbing.

So getting rid of the ear infections rose to slot number one in our quest to prioritize getting Oli's little body in order.

On a hunch borne of a far gentler experience, we suggested pulling dairy from Oliver's diet. He was on whole milk at the time and clearly was not thriving. Our pediatrician agreed, and suggested that rather than simply moving him to soy or another substitute milk, we keep him on soy formula until his second birthday. The calories could only help, she reasoned. And so, armed with this battle plan, we went forward.

Within two days, it was clear that the enemy was on the run. Oliver did not projectile vomit after each bottle now. Instead, he spit up slightly, which we were more than willing to accept. A month or so later, his pediatrician offered another suggestion after digging deeper into his medical history: let's pull rice and see how he does. Sure, we said. Why not?

For six months, Oliver was dairy- and rice-free. And he did much, much better. His ear infection stopped cold (he hasn't had once since he's been in our care, actually). His nose cleared up. His nagging cough disappeared. And the puking was finally gone.

We were elated. After all, it is much, much easier to focus on the bigger issues in life (like walking) when you are no longer worried about a baby who can't keep anything in his stomach.

But here we are now, 18 months further on. And Oliver still has chronic diarrhea. And he's still not growing. And nothing seems to help.

Enter a whole new round of food examinations. Under the microscope this time: wheat and gluten.

Oliver, it seems, fits the bill of celiac disease to a T. A quick search of some legit groups on the web suggests that our boy is most likely dealing with something a little bigger than dairy, and quite probably a life-long issue with a pretty basic food element.

I called our helpful pediatrician and was encouraged to begin a wheat- and gluten-free diet and see how he responded. Because of the hoops that must be jumped through to order even a simple blood test on a child whose biological mother is fighting termination, the doctor felt she could stamp such a test request "medical necessity" and opt out of the hoops if Oliver showed improvement on the diet. Dontcha' love docs who know how to finesse The System?

As of yesterday, our kitchen counter resembled (more than usual) the natural foods section of our local grocery chain. We've got some bread tagged "brown rice loaf" snuggled up next to a box of "Gluten free baking bix" and--Mr. Blanding's treat to his special boy--a bag of dairy-free, soy-free, gluten-free chocolate chips. That last item was a total "I'm a sucker dad" buy, and when I teased Mr. Blandings about it, he stuck out his lower lip and shared that he can't imagine being two and not getting to try the yummy chocolate chip muffins your Momma puts on the table on Saturday morning. Sorry, ladies. He's not available. :-)

Benny was kind enough to loan me her library of wf/gf cookbooks, so I'm wading into the world of cooking like I've never cooked before. I admit that it's a little intimidating. I've always felt cautious about food allergy stuff because--let me be utterly honest here--I know far too many wonderful people who have made dietary issues their god. They are consumed by what they can and cannot have, and their daily lives are defined by this thing that takes on more and more significance the farther into it they swim. It becomes a control issue, rather than a relief-filled prescription for freedom from illness, pain or suffering. And it snowballs. There's a boogeyman of a food around every corner for some folks. Wheat is the devil. Don't eat soy. Stay away from this. You eat that?!?

And I just don't want to go there.

But for Oli, I will find a way to strike the balance between helping him be healthy and micromanaging. I will redefine how I cook, and why I make certain dishes in particular ways. I will praise God that our diet is already largely based in the food groups that are most friendly to his tummy (beans, rice and fresh veggies). I'll morph around the new parameters set before me as I walk into my kitchen. I will invest time from somewhere in my day into learning this new set of skills.

And I'll make wheat-free, gluten-free, dairy-free, soy-free chocolate chip muffins. Because I love that boy. :-)


Paulina said...

I cannot imagine how hard it must be for you! But what a lucky boy he must be to have such a loving family.

Daisy said...

What a refreshing post! The unconditional love of a child and a balanced treatment of food allergies. Loved it!

Sarah said...

You go, MG! I know you can do it.

Anne Devlin said...

My nearly 15 yo dd has celiac disease - and the list of Oli's issues sounds so familiar. One caution about going gf without a dx is that the definitive was to dx celiac is thru a small bowel biopsy. And you can't do that without being on gluten. We did exactly what you are doing and have just decided that since Suz is SO reactive to gluten, we can live without the medical establishment's "official dx" (and our insurance rates might just be lower because of that descision, anyway). But if you want to eventually do the biopsy, you'd have to reintroduce gluten for a period of time. I just couldn't see doing that to Suz. Suz did have the blood test for antibodies and tested positive... Just some food for thought (and you may have already considered all of these things...) One really happy thing, it isn't life threatening if treated, treatment is relatively simple dietary changes - and it's so much easier going gf now than it was back when Suz was dx'd in 96.

Luke said...

...wait... so are you still rice free too!? Because, I live on corn and rice--for the most part--because I can't do wheat. Without rice it would be a lot more tacos for me [smile].


Vicki said...

Wow! Oli you are so blessed to have such a smart Mommy. We have a baby right now who is allergic to egg, peanut butter and milk in my breast milk so I feel ya. Totally changing your diet is hard work! Are you changing everyones or just the things that Oli is eating?

Paula said...

Hmmm...maybe I can get a copy of some of your favorite recipes! ;o)

mary grace said...

Thanks Paulina, Daisy and Sarah for your support!

Anne--yes, the scope is the end-all-be-all test but no, I'm not willing to go that route until we have a more firm reason to believe that this is what it looks like.

Paula--I am afloat in a sea of recipe-lessness. If you have any to throw my way, I'd love to hear them!

Luke--We added rice back infor Oli at the end of the six month mark, and he seems to tolerate it well now. THANKFULLY!

Joshua1:9 said...

Check out Elana's Pantry for some great GF recipes. I really enjoy your blog:)
Ronda - foster mom in AZ