Monday, September 10, 2012

The Context Post: Managing Sensory Processing Disorder (SPD) with Paleo / GAPS diet principles

Lingering in the background of the last few months describing GAPS diet related stuff is, of course, a full and complex story. Early in the spring, my 2.5 year old daughter was diagnosed as having speech delay and sensory processing disorder (SPD).

WOOF. How is that for a suddenly serious, personal revelation on what, to this point, has been a fairly lighthearted blog?

For those not familiar, sensory processing disorder (SPD) is a neurological disorder that affects the way that a person's brain takes in and perceives sensory information. This includes inputs from sight, sound, touch, taste, smell, and the lesser known vestibular (body spatial relationship) and proprioceptive (pressure) senses.   It often occurs in tandem with many other neurological disorders.

I went back and forth in my head on whether it was worthwhile, discussing these issues. After all, my daughter is deserving of privacy as much as any other person, and I debated whether it was worthwhile bringing family business to a public sphere.

Then I realized: We've learned a lot in the last 7 months. The journey thus far has proven (and continues to be) a crucible for our whole family in many ways. What if...what if some of the lessons we've learned over weeks and months could be distilled into blog posts that would help other parents of children with sensory issues and other neurological issues? What if they might learn something by reading a post that is turns out to be a shortcut for them, whereas otherwise they'd have spent much longer working through it on their own, or perhaps to never even have tried it?

As if it weren't obvious from my slowed blogging pace, we had to hit the ground running with managing my little one's SPD - in large part because it seemed to be a main culprit in her speech delay. After all, if your brain is not processing sensory information in a typical way, it is very likely going to impact how well your brain can interpret and develop language - and that window for optimal brain plasticity and language development closes very quickly. So, we've been immersed in speech therapy and occupational therapy. We've tried so much - some stuff works for us, and some stuff doesn't. This turns out to be typical, as every case of SPD is different and unique to the person who has it.

Lingering in my head was a suspicion that my daughter's diet could be even better honed from her 80/20  paleo model to manage her SPD symptoms. While our family tries to stay gluten free at home, I hadn't restricted my daughter from eating Sunday school snacks (almost always wheat-based as in pretzels, crackers, cookies) or the odd piece of cake at a birthday party. News of her diagnosis, however, suddenly motivated me to crack down. I wanted to know for sure if the small but regular doses of gluten were impacting her. I also reluctantly completely cut her off of dairy. While our state laws are tough on raw milk, we had been buying low temp pasteurized grassfed milk from a local farmer, and this milk - in addition to full fat cheese and yoghurt - at that point made up a significant portion of her calories.

Upon going "cold turkey", the difference was astounding. Within a few days it was as if my daughter came out of a fog. We went from her sometimes acquiring one word per week to trying to say about 40 words in a single weekend. Her eye contact also dramatically improved in those few days. To this day I still can't be certain whether it was the gluten, or the dairy, or both, but I'm willing to bet that it was both, because wheat and dairy sensitivity frequently go hand in hand, especially in the presence of  neurological disorders. My mother-in-law (a retired speech therapist) and my dear friend both remarked on the huge before/after difference in my daughter's attempts to verbalize, whereas before she had simply not even been trying.

In the late spring I saw something flicker across my Twitter feed, mentioning the use of the GAPS diet in managing dyspraxia. My daughter's speech delay was initially identified as apraxia, which is a kind of verbal dyspraxia - a verbal motor planning disorder, so in that moment I began to seek more about GAPS. As I learned, GAPS is a long-term gut health management diet plan that aims to get to a source of many neurological issues, including my daughter's condition.

The GAPS theory dovetailed so precisely with what we had witnessed going on with my daughter's reaction to going wheat- and dairy-free - in that for her to have sudden and documented neurological improvement when removing wheat and dairy in her diet, her damaged gut was probably letting those proteins through to her bloodstream and her brain. I knew that for our family, in this case, I was willing to give GAPS a try. (Note that GAPS does not de facto exclude dairy and permits it in certain forms in even in the early stages, but GAPS does allow for dairy to be excluded entirely if it needs to be, as is the case for us right now.)

First, I found a certified GAPS practitioner who was willing to consult by phone (as we have no certified practitioners living close to us) - a delightful lady that works with special needs kids as the core of her consulting business. I gathered for her all of my questions, and she patiently answered them over the course of a two hour phone call. We began my daughter on GAPS in earnest in late June, with a very slow reintroduction of foods over the following weeks.

My youngest daughter is the only one of us that is full-on GAPS. Like many parents who kick off GAPS and integrate its bone broth, probiotics, and other elements into their routines, I've had my initial doubts as to its impact, but those were put to rest when we recently had to reluctantly suspend her intake of probiotic drops and probiotic foods (sauerkraut, kimchi, etc.) in order to collect stool samples that my daughter's primary care doctor was sending off to a lab. I saw some noticeable SPD regressions in her in that short time frame, enough to convict me that GAPS had indeed been bolstering her progress. We're only 2.5 months in, but I'm excited to see my daughter's continued progress as supported by GAPS.

Since my daughter is still nursing, I'm also strictly wheat and dairy free. We are careful, though, with our significant dietary shifts - under the advice of our certified GAPS consultant and the close supervision of our primary care physician, we are taking care to monitor nutrient intake and absorption as best we can. As just one example, due to the lack of high fat dairy in our diets, both my daughter and I take a high quality form of Vitamin K2, the fat-soluble vitamin found in high fat dairy and natto, which aids the body in depositing calcium where it belongs (i.e., teeth and bones, instead of in atherosclerotic plaque). All this information I put "out there" is to explain that we did not make lightly the decision to try GAPS for our daughter, and it remains an undertaking that we pursue carefully, with the advice and services of professionals that we trust. I see GAPS not as the only tool in our "SPD management" toolbox, but it is a cornerstone in her progress - it supports everything else we try with our speech therapy and occupational therapy by giving her the best chance at learning and hitting new milestones.

Is the GAPS diet worth considering for your family or one or more family members? Only with research and consulting your trusted primary care physician can you know for sure. But, if you're thinking about trying it, you can be sure that here at Primal Kitchen, you'll often catch tidbits about how we've found GAPS shortcuts, practical preparation tips, and the social/cultural aspects of doing GAPS for a young child with sensory issues.

Do you have a loved one with sensory processing issues? Have you thought about giving GAPS a try for boosting gut health? What have been your experiences?


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This blog post is an explanation of personal experiences for entertainment purposes only, and is not to be misconstrued as medical advice. Please consult your trusted primary care physician with any questions about major changes in your diet, and remember that decisions about your diet are your own to make based on your own health and circumstances.

11 comments:

  1. Such a great post. Very interesting.. I hope you keep having success with it. I just need to now find a subtle way of emailing this to my brother for my neice.. It sounds very similar to some of the things she's going through... How do you tell a parent that their child may be delayed due to the diet that she is on??
    Thanks for this post!

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    1. Ah, the age old question of whether to involve oneself in a loved one's lifestyle/health. It's a tricky issue. If you're in dear day-to-day contact with this family, and have what amounts to a very close, well-earned friendship, then an artfully, gently, privately delivered message *might* have an impact.

      If you're not in regular contact with them, though, and don't have lots of details/context on this family's daily life, it's worth reconsidering, because such personal suggestions are likely to be received well only coming from people who have demonstrated a consistent, faithful, non-judgmental friendship/relationship.

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  2. As I read this post, I have a pot of chicken broth simmering on the stove and a crockpot of bone broth cooking on my counter :-) I recently decided to start looking for a treatment for my lifelong trichotillomania, and it was thanks to your blog that when my therapist started describing this diet to me as something that could help I was able to say "Oh yeah, the GAPS diet!". I'm currently on GAPS intro day 11 (I just got to start eating the squash pancakes!) and things are going pretty well, but my heart goes out to anyone who's putting their child on this diet! Getting kids (who are usually naturally picky) to eat all that broth and all those lacto-fermented vegetables has to be tough! I really appreciate you sharing your (and your daugther's) story, diet has SO much more to do with every aspect of our lives than most people realize and the more people who are out there talking about it, the more it will (hopefully) eventually become common knowledge! I hope you continue to see improvements with your daughter!

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    1. Sara,

      So cool that you are exploring GAPS as a way to manage your condition! I hope that it helps you, or at least brings you a few steps closer to solutions.

      GOOD LUCK. :)

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  3. A, your girls are so lucky to have you advocating for them. sending you a lot of love, as always. xoxo Amanda

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  4. Thank you for sharing this with us! My son, who struggles with SPD and PDD-NOS, made tremendous progress coming off of gluten and dairy. I have toyed with the idea of GAPS for myself, perhaps I will slate that for 2013.

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  5. I just wanted to say thank you to you guys for your encouragement, and for sharing your stories. It means a WHOLE LOT to me to know that other parents whose kids have sensory and other neurological issues are making great headway while scrubbing up their diet!

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  6. Thank you SO much for this post. I have two kids who have both been diagnosed with SPD. I've been wavering about the idea of going on GAPS since my naturopath recommended it but hearing from a real life Mum about the impact it's had for your daughter has given me the push I've needed.

    Thanks so much for sharing some of your journey! It's wonderful you have figured it out so early on!

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    1. So glad to hear from you, and interested to hear that your naturopath has recommended GAPS. I hope that whatever dietary adapations you decide to tackle turn out to yield positive changes, and I would love to hear more from you at some future point if you're willing to share on how things have progressed.

      A long distance girl friend of mine whose child was diagnosed with SPD and apraxia also was recommended GAPS by her physician. I think that slowly, more and more health care practitioners are seeing paleo / GAPS as a useful tool in their patients' toolbox.

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  7. I want to say thank you for your post. My son has SPD. I don't give him any dairy, but I never thought of taking him off of wheat/gluten also. This makes me so relieved and hopeful to see if this will help him!

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  8. I'm back in 2013 to let you know that I re-read this post and again felt encouraged that I'm not alone in terms of SPD and diet modifications and our kids. Interestingly, it does indeed look probable that GAPS will show up in 2013. Thanks for being a voice and light for those days when I feel overwhelmed. It's just the knowing that helps.

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