Monday, August 22, 2016

Why We're About To Be "That Family"

It's been nearly 3 years since Luke's digestive system started showing us it was unhappy.

Since then, our poor guy has gone through 2 rounds of c-diff, 5 prescriptions of the most awful of antibiotics, 7 or so rounds of blood work, 2 X-rays, a CT scan with a barium drink that almost made him throw up, a colonoscopy and a scope, an anti-inflammatory prescription, 3 types of vitamins, seen an allergist and chiropractor as well as 4 or so GI specialists, his pediatrician, and his school nurse, as well as a psychiatrist and his school's social worker. I didn't even include the endless stool samples in an attempt to refrain from saying the word stool (sorry), but it's worth noting really, because he had stress and anxiety over going to the bathroom into containers, and we all nearly vomited in the process.

Looking back at that paragraph, it makes me want to just bawl.

It doesn't even include the cumulative MONTHS of school he missed, the field trips, or the birthday parties. It doesn't discuss the depression and anxiety he has over missing things or fearing having an accident in an embarrassing place. It doesn't mention that we almost canceled our Disney World trip because of it, and that while we were there, he had a devastating public accident, or that he had to stop for trip after trip to the bathroom between rides, and we had to carry 5 extra pairs of underwear into the parks with us each day.

My sweet 7 year old has been through a lot.

And as his parents, we have too. Tears, questions left unanswered, stress, fear, disappointments, and uh...bills. Lots and lots of bills. Thousands upon thousands worth of bills.

Before March of 2014, he showed no signs of having any health problems. He was a happy, healthy, smart little kid with a promising childhood. He had antibiotics twice in his young years. Once for a double ear infection when he was about a year old, and once for strep throat, which he had on his 5th birthday. Apparently that was enough to throw his gut's flora off track, and two months later, his gut was a mess - never to be the same again.

After years of tests and trials and one seriously unhappy kid, we've finally decided to drastically change things in our home.

It's a vicious circle, but we avoided changing anything big because we felt like he had enough to deal with. He may have to endure tests and miss out on a lot, but at least he could eat like a normal kid eats, and not be that kid from the weird crunchy granola family that sends homemade gluten free crackers and kale for a school snack. (I'm allowed to say that because that's totally about to be us, now.) What we didn't realize is that it was likely that "normal" diet that was causing the problems in the first place, and certainly exacerbating them.

We hit a point where we felt like we'd tried it all. The longer this went on, and the more scary procedures he had to go through, the worse it was for all of us. This summer, he was doing great, until suddenly he had a flare up that he couldn't recover from. He's had problems daily for the past 2 weeks, and with school fast approaching - with the stress, fear of the new, and an embarrassing setting to have an accident in, I started asking around for advice - from any and everywhere I could think of. I came up with the following game plan:

1. Eliminate popcorn & corn. They cause a flare up every time!
2. Sign him up for yoga. The breathing, meditation, and concentration are perfect for him.
3. Pack nutrient rich lunches & snacks for school this year.
4. Cut back further on dairy & refined sugar.
5. The whole family goes gluten free.

Kind of hard work, right?

And number five is...ya know, a big deal. This is not me seeing a fad diet or blindly accepting that gluten is the devil - this is a decision I've been trying not to make for a really long time. If I go back from when the problems started until now, there have been 5 people (all at least semi-professional or greater or largely knowledgeable on the subject), that have suggested we try a gluten free diet. After all - you can test negative for an allergy to wheat or for Celiac Disease, but still carry an intolerance for it. Meaning that the process of digesting it is creating subtle inflammation in your body.

My son's body has been through A LOT, and any less inflammation in there would be a help.

I decided to crack down on gluten first, and the most strongly, because a) it currently makes up a huge portion of the kids' diets and would have a widespread effect and b) regardless of the rest of us in the family not "needing" the change, it will still be greatly beneficial to all of our bodies.

I also think it would be harder to take dairy away completely right now. However, we did it before when we realized dairy made Luke's problems worse, so if we need to cross that bridge eventually, we will. For now, we're just fully making the switch from cows milk to almond milk for drinking & cereal. (Luke and I switched 2 years ago, but Matt and our other 2 boys hadn't totally.) And for cooking and baking we will use honey and agave rather than granulated sugar. Small changes, but something.

I've been doing research and pinning gluten free recipes and shopping lists and trying to create a new normal for us over the past week or so. I am overly grateful for the abundance of information and ideas out there these days, but it's surprisingly difficult to figure out where to get started! There's a lot to consider when you're dealing with kids and their picky pallets and school schedules while also wanting to make it feel like they haven't just experienced a huge loss. I'm exhausted just thinking about it all!

But I will say this. I have certainly started to re-think my opinion of people that chose to pursue a drastic change like this. It doesn't even matter what their motivation is (though better health is always admirable) - it is hard work and sacrifice to go against the grain (ha! see what I did there), and maybe even a little acceptance to opening yourself up to ridicule.

Trust me when I say I don't want to do it, but we are about to be That Family. So sorry in advance for being a pain in the butt at parties and holidays, but we have to try.

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