When we first started down this rabbit-hole, we were told that our child had sensory integration issues. For anyone who thinks this is a bogus diagnosis, the occupational therapist showed him a metal key and a wooden ball and clarified that he knew what the two objects were. She then made him look away and put one item into his hand and closed it around the item. She then asked if he was holding the key or the ball.
He had no idea. His sense of touch was that far off.
So this is not an issue of maturity. Babies can feel differences in objects. Something is wrong.
Unfortunately, I can find NO research done on the causes of SPD. PubMed covers the value of occupational therapy, but there is not so much as a case study on anyone who has recovered or any tested hypothesis of causes. If anyone finds one, let me know.
But I do know of one person who recovered. In the 1970s they did not have this diagnosis. Instead I was called clumsy, irritable, unaware of her surroundings and “does not seem to feel pain”. I was the sort of child who could fix the torn hem in a skirt with staples and sit on them all day without noticing. When my appendix burst, I calmly complained of “a really bad stomachache” and filled out my own admitting forms at the hospital (I was 6). I got a black eye from walking into a doorknob, and until a few years ago I was on a first name relationship with the guy at the body shop. I never hit a moving car, only large, easy to see, stationary objects. Like trees. I think I hit three different trees.
Since going gluten-free and dairy-free I have hit nothing with my car. I have not even tapped another car while parallel parking in downtown Chicago (I drive a minivan). Food tastes very different. I no longer need so much seasoning in things. It is actually kind of creepy.
How did this happen?
My hypothesis, which I have neither the tools nor the diplomas to test, is that Sensory Processing Disorder is actually in many cases, simple malnutrition. Period. If you have celiac disease you can eat the healthiest diet ever. Do a shot of wheatgrass once a month and you will still be malnourished. Malnutrition is not necessarily due to a poor diet. It can be due to pathology. Celiac is a well documented pathology which results in malnutrition. My guess is that there are others that we just don’t yet know or understand.
And while there is no research on sensory processing disorder and diet, there is PLENTY of evidence that sensory processing type issues are diet related. A truly horrifying amount of data.
Go to PubMed. Most of the links in this document will take you there. PubMed is from the NIH. Type in the words “nervous system disorders and nutrition”.
Yes, you read that correctly. Over 11,000 results.
Due to the crushing volume of research, I was unable to read all of the results. But among those with catchy titles were these.
In 1948, British POWs who had eaten too many carbs and not enough veggies (and were therefore deficient in B-vitamins) returned with a variety of brain disorders. Read the description of their issues with visual motor processing and poor muscle tone and the dietary cure (more veggies, fewer grains) here. Also note that the ingestion of any starches (including potatoes) slowed their recovery.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2529668/?page=1
Or this one from an Italian review called “Neurological manifestations of gastrointestinal disorders, with particular reference to the differential diagnosis of multiple sclerosis”. I like how they link particular deficiencies with disease. I am so grateful to the Italian medical system. I cannot even tell you how much good stuff on this is coming out of Italy. Also check out the Tedx talk on this subject under the MS heading on the main menu of the site.
http://www.ncbi.nlm.nih.gov/pubmed/11794474
Here is a recent one on the role of Vitamin K on psychomotor development. Vitamin K comes from leafy greens.
http://www.ncbi.nlm.nih.gov/pubmed/22419547
Here is one on B12 deficiencies in the elderly and the neuropsychiatric changes that ensue. Note that B12 commonly comes from meat so deficiencies have historically been rare in people with good digestion. Seniors tend to have digestive issues. So do people with autism. Guess who has B12 deficiencies?
http://www.ncbi.nlm.nih.gov/pubmed/9587039
Or this one on the neurological and psychiatric aspects of digestive diseases which is unfortunately in Hungarian (the abstract is English, but the full meta-analysis is in Hungarian) so I can’t check their facts, but we can read the abstract which I personally found horrifying in how simply it explains the way that sensory information, impeded by the gut, is processed incorrectly in the brain.
http://www.ncbi.nlm.nih.gov/pubmed/18952527
So we do not have the research specifically on SPD. What we do have, however, is a stupefying amount of evidence going back to the 1940s that malnutrition and vitamin deficiencies, which can have many causes, can cause sensorimotor challenges. Which is why, when it was my kid, I demanded to see a nutritionist who worked with children.
Gluten free food is indeed expensive. But a naturally GF diet of fruits, veggies, eggs (if you can handle them), nuts (if you can handle them) and meat is a bargain compared to occupational therapy.
Very good point.Please check out Natasha Campbell-McBride GAPS diet-basedon her book Gut and Psychology Syndrome.
I cannot find the tedx talk you are referring to. Can you provide the name of the person who gave the talk? Thanks.
I just realized that I never actually published the MS page. I fixed that. The woman’s name is Dr Terry Wahls. Her talk can be found here
http://www.youtube.com/watch?v=KLjgBLwH3Wc
She has since given many more talks on the topic many of which you can find on YouTube.
You are correct. We do have celiac disease and once that was managed, the SPD diagosed by both a famous OT clinic and a very prestigious pediatric neurologist began to go away. What angered me is that neither of them suggested that our symptoms might possibly be diet related. Which, of course, they were.
You are also correct that symptoms do not make a disease. There are many underlying causes of arthritis, headache etc. There may well be many root causes of SPD.
I am just hoping someone does the research on malnutrition. It’s my pet hypothesis since everything from osteoarthritis (Vit D) to birth defects (folic acid) is due to subclinical malnutrition. That and the 11,000 hits.
I followed your suggestion and went to the SPD Foundation site. Unfortunately, from what I could see, the NIH data was accurate. Research is being done on early diagnosis and management of SPD, but after reviewing all the studies, there were only two epidemiological “studies” about the root causes (no controls, not repeated, correlation without causation, that sort of thing). Millions of children affected and in eight years we have…two data collections? Don’t these children deserve better?
So I am looking for the sort of studies you see for autism. For autism, we have studies about neurotoxic insecticides, heavy metal poisoning, vaccines (discredited, but at least researched) gluten intolerance, and epigenetics (why a gene turns on). Hopefully, someone is doing that work for SPD kids too and someone can show me where it is.
But I am starting to lose hope.
It is difficult to fix a problem without understanding the cause. We can cure everything from black plague to Type 2 diabetes because we understand the cause and I want a cure for SPD.
For anyone dealing with SPD, the SPD Foundation provides useful information about diagnosing and living with SPD including insurance codes and how the therapy process helps. Anyone who wants that information can look here. Unfortunately I don’t think this is a direct hyperlink. I think you need to cut and paste.
http://www.spdfoundation.net/library.html
Thanks again for commenting, and good luck with your journey. Hopefully you spend less time fixing your car than I did!
– Christina
SPD is a neurological disorder, not the effects of malnutrition. It can be seen in otherwise healthy people from newborns to older adults. What you experienced likely wasn’t SPD but Celiac or a similar type of disorder. Celiac’s symptoms include some sensory issues, including some that mimic Autism – that doesn’t mean Autism is caused by Celiac/dietary issues, just that they share some of the same symptoms. There are tons of disorders and diseases that share symptoms, but that doesn’t necessarily make them related in any way.
There are many thousands of children suffering from malnutrition who wouldn’t be diagnosed with SPD as well as children with SPD who don’t suffer from malnutrition.
If you’re wondering about SPD studies, check with the SPD Foundation (or some name like that). They’ll be able to direct you to the research.