Update: GAPS, Unorthodox Tweaks, and New Theories on Salicylate Sensitivity

My 3 year old daughter had a good month. OK, a really good month. The thing about having a special needs kid, is that needed core resources can often be inaccessible due to insurance, geography, or other heartbreaking complications. Or, the pendulum can find itself on the other end of the spectrum, where everybody is selling something to help, and the bewildered parent tries to figure out what is or isn't covered by insurance, and what offerings seem most promising.

In our house we have parades for celebration-worthy poops.
(Via Flickr Creative Commons.)

In the second case, it's not uncommon for a kid to make developmental or other leaps, and the parents find themselves not able to precisely determine the causes for success...because this isn't a double blind single variable/control random trial with lab rats; this is your one and only precious child, for whom you will spare little effort or expense in the hopes of progress. That is, you can have several contributing factors at once, and it can be hard to pin successes on any one factor.

In our case, we have connected in recent months with a board certified pediatrician who is known in our area for specializing with special needs kids and gut health. There are many things she is trying with our daughter, including some targeted supplementation after an initial lab determining nutrient status. Most notably, though, she characterized the GAPS diet as a, "good starting point". She noted that my daughter's ongoing issues with soft, mushy poop signaled that yeast could still be a problem, and asked us to cut way back on fruit. Although fruit is GAPS-legal, I think it is easy to overdo, at least in our case, because it is so portable and fast. Our daughter was eating 3 or 4 pieces in a day at the time. The doctor also recommended introducing a small handful of ancient gluten free grains, to see how they were tolerated.

GRAINS?! The part of me that was so committed and knowledgeable about how GAPS is supposed to proceed was fairly panicky at the thought. GAPS is supposed to heal the gut, and then much longer down the road, include nongluten grains once the gut was stabilized.

But, I had been feeling desperate to try something different. Mushy poop is not exactly an asset for a kid you'd hope to daytime potty train before her preschool potty training deadline arrives this fall. We started to follow the doctor's prescribed guidelines. While quinoa did not seem to settle so well, buckwheat seemed to agree with her very well, so she was getting very small servings of it as a carb source. Occasionally small amounts of rice (known by many in the paleo community as a safe starch) also came into play.

And guess what? She did not regress.

In fact, for about three glorious weeks, my 3 year old made some wonderful progress. It is, of course, possible for a parent to be biased or overly subjective when evaluating behavioral changes as correlated to diet changes. But, do you know what is not so subjective? Suddenly solid, normal-looking poop. Also: Sleeping all the way through the night like a rock star. Also: Her speech therapists, occupational therapist, AND her preschool teachers gave us extra-encouraging reports.

So, not only was our daughter's behavior and concentration improving, but her previously mushy, foul-smelling poop suddenly resolved into Bristol Stool Scale 4 poops. This is what many in the special needs community would call a "holy grail poop" - it is a pretty universal sign that digestively, something has resolved or is resolving in the right direction.

So, I got cocky. I thought, "This is great, we have figured things out, we are helping her!"

And suddenly, like that, 3 weeks of awesomeness went to (har har) crap. Awful poops, increasingly disrupted sleep, lack of concentration, and ultra-lethargic, distracted behavior.

I was beside myself. I was beside myself trying to figure out what the heck happened. What had changed? Then I realized: I had been doing a 21 Day Sugar Detox through March, and about a week before Easter it ended. Suddenly, I was back to making stuff that I hadn't made for about three weeks - treat-y things involving coconut flour, almond flour, honey, etc. We also had some meals involving marinara (= tomatoes), and I had bought some frozen diced pineapple and mango - all three of which I had not bought or cooked in that three weeks.

The common denominator among these foods seems to be salicylates - and these inadvertently reintroduced foods happen to be moderately to very high in them. Sarah Ballantyne of The Paleo Mom wrote a post on salicylate sensitivity a while back. The possibility of salicylate sensitivity had also been brought up by our certified nutritional therapy practitioner.

Many who work in the field of special needs kids' gut health know that there is not always a simple answer, and that often sensitivities and allergies must be determined slowly, sometimes taking months or years to suss out. Frequently, as seems to be happening for us, major issues like gluten and dairy will be identified, only for smaller, lesser-known factors including (but not limited to) salicylates, phenols, amines, food dyes, artificial colors, and artificial flavors to be determined as fellow culprits. More complicated still, they are often naturally occuring chemical components of otherwise healthy, harmless foods that most folks can eat with impunity, so the lesser-known factors are rarely obvious unless strict dietary elimination trials are performed.

In our case, while nothing is yet 100% certain, there was certainly a dramatic enough correlation to merit serious consideration of dietary salicylates as a real problem for our daughter - because when I stopped feeding her honey, almonds, coconut, tomatoes, pineapple, and other higher salicylate foods in favor of lower-salicylate alternatives, her poop went from ultra messy and gross back to celebration-worthy, her sleep improved, and she began talking up a storm again, using sentences with even 9 or 10 words, and increasingly discussing her surroundings.

For me, continuously tweaking her diet has become much less about following a protocol's rules (whether GAPS, paleo, etc.) than turning it into a real n=1. For example, buckwheat may not be optimally nutritious in terms of its nutrient content, but as a carefully considered carb source for my daughter it beats many fruits and other high-salicylate foods because it does not draw her into messy-poo-Crazytown. In the meantime, though, several solid GAPS principles remain in place: such as probiotics, live fermented foods, and bone broth!

I have a feeling this is just one example of many tinkering exercises we will be doing with her diet in the years to come, but until then, I celebrate that we can possibly slide one more giant piece of the puzzle into place.



~
Have you broken rank with a protocol or dietary recommendation in a bid to better personalize dietary needs?