The Story: Part 1 of 3

I’ve been thinking that it would be good to really write about all of the changes that we’ve been making in the last six months or so.  So, should you have some time to spare J, here is Part 1 of 3 of The Story about all of the health changes we’ve been making.  Don’t feel obligated to read it all, I just thought it might interest some people, and it was a very good exercise for me to be able to spell out the what and the why and the how of all of these things.

Sensory Processing Disorder (SPD), an Autism Spectrum Disorder:

               Sensory processing is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or "sensory integration."

Sensory Processing Disorder (SPD) is a neurological disorder causing difficulties with taking in, processing and responding to sensory information about the environment and from within your own body (visual, auditory, tactile, olfaction, gustatory, vestibular and proprioception).  SPD [can be likened to] a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks.

                                             http://www.spdfoundation.net/about-sensory-processing-disorder.html

Jack was diagnosed with Sensory Processing Disorder in September of 2011.  Earlier in the year (June or July?) I had been reading a book about potty-training, and it talked about kids with different types of personalities.  One of the types was the “sensory sensitive” child.  There was only a paragraph or two about this type of child, but it was a description of Jack.  I was talking to my mom soon after and mentioned this, and we got into a discussion about this idea of being sensory-sensitive.  She recommended that I read a specific book about it (I think she may have even sent me the book), and all of a sudden my child started making a little more sense to me.  I took him to the pediatrician to get a referral to have him evaluated by an occupational therapist, and he was soon diagnosed.  We immediately began occupational therapy for him and soon enrolled him in the Early Intervention preschool program, which is run by the school district, for preschoolers who would benefit from some extra help early on. 

The more I read about SPD, the more I realized that I had it too (the cause of SPD is at least partially linked to genetics).  So, as I learned about things that would help him, I started to use them on myself as well, and they helped me too, which further cemented my idea that I also have SPD.  Soon we were fully entrenched in doing OT and at-home therapies.  Reading books about what is going on inside of kids with SPD was like reading a journal from my own childhood.  It was kind of eerie.  But, I was glad to be able to understand myself better.  I started to have a whole lot of epiphanies about objects, colors, foods, activities, etc., that I have always really liked or disliked; a lot of my preferences were based on the sensory properties of things.  It’s been really awesome to kind of figure myself out.  I had a similar experience in college when I realized that I had pretty bad OCD.  I started reading a book about it one day, something that my mom had recommended, and it was like taking a tour of my own brain.  After spending some quality time in the mental health section of the BYU library, I took myself in to my doctor and told him I thought I had OCD and anxiety.  We talked, and he had me fill out a questionnaire, and then he prescribed Lexapro.  Taking Lexapro changed my life; I hadn’t realized how different I really was because of the OCD/anxiety, until I got medicated and saw how much better my life could be.  It was incredible, and I will be forever grateful to my sister Sharon who encouraged me to get some help.  It was a game-changer. 

Back to the SPD.  Mike and I worked on so many things with Jack, like his gross motor skills, fine motor skills, eating combined foods and foods of different textures and spicy foods, emotional regulation, and social skills.  These were all issues with me (to some extent) as a child as well.  Jack’s occupational therapy helped a lot, especially with the eating issues, and his preschool helped with everything else.  He has steadily improved over the last year and a half, through lots of hard work on the part of me and Mike and his preschool teachers and his occupational therapist. 

I have a close friend whose son has severe autism.  She is a very intelligent woman and has tried many different things to help him to be happy, and a few years ago she started to see a naturopath who claimed that she could help to reverse his autism.  That’s right, the naturopath told her that she could help to (at least partially, if not fully) cure this boy’s autism.  That’s a bold claim, but it is made easier to believe by the fact that the naturopath used to have two autistic children; now she only has one slightly autistic son and a totally normal daughter (no more autism!).  Jeanette, the naturopath, used to have lupus, celiac disease, and several other very serious conditions, but she does not anymore.  So the woman makes bold claims, but the proof is in the pudding.  Anyway, my friend started taking her son to see Jeanette, and instead of him continuing to become more self-injurious and unhappy, he is starting to talk and is quite obviously improving.  My friend really, really recommended that we go to see Jeanette to see if she could help with Jack and mine’s SPD as well as my OCD/anxiety.  I was reluctant for a long time, knowing that there would probably be dietary changes involved and also knowing that it would not be cheap; insurance doesn’t cover naturopaths. 

After a lot of thought on the topic, we decided that I would go to see Jeanette (the naturopath), in November (2012).  She was able to run tests on me to determine what I could do to help alleviate some of the symptoms of the SPD, etc. and determined that I needed to stop eating gluten and dairy.  She also suggested that we go ahead and take Jack off of gluten and dairy, surmising that his test results would be very similar to mine because of our particular set of issues, genetics, etc.  Jeanette also gave me a set of homeopathic “medicines” to use to help my body on a detoxification process.  This has been a very multi-faceted approach to “healing”.  We started with me to see how the process would go and then have started the process with Jack as well, as we’ve seen how it’s worked with me.  Here is what we have done, slowly but steadily, over the last six months or so:

1.  Gluten free & dairy [casein] free diet (GFCF)  Jeanette felt like we would be ok eating small amounts of butter, so we do, but that is the only dairy we eat.  Why gluten free and dairy free, you ask?  Someone else can explain it much better than I can, so here is the reasoning behind the GFCF diet:

              

One of the most promising new treatments is dietary intervention. Although many doctors still resist the notion that a special diet can help, for the most part diet is no longer considered an “alternative” therapy. It is supported by several peer-reviewed studies, thousands of documented case studies and a number of new, well-funded research projects. In fact, data from more than 25,000 parents collected by The Autism Research Institute over the last forty years shows that diet is one of the most successful interventions for ASD, achieving positive results in 65 percent of the children who have tried it.

All dietary treatments for autism share one underlying principle based on clinical observations: the gut has suffered damage resulting in permeability and depleted enzyme production. The goal of the diets currently in use is to heal the gut, improve digestion and absorption of nutrients and remove foods that directly or indirectly lead to autistic symptoms. To do this, each of the diets emphasizes one or several aspects of this problem:

• removing allergens and other problem foods.

• treating gut dysbiosis.

• adding supplements to replace missing nutrients.

• using digestive enzymes to improve digestion and the absorption of nutrients.

• identifying and treating any underlying problems

The Gluten-Free, Casein-Free (GF/CF) Diet

This intervention has its origin in the observation that some symptoms of autism resemble those shown by individuals addicted to opiate drugs. Research has implicated the incomplete breakdown of gluten and casein during the digestive process, probably due to the absence or inactivation of an enzyme called DPP-IV. When these proteins are not completely digested, they can retain opioid characteristics and, in fact, opioid peptides have been found in the urine of autistic children since the early 1990’s. Because the autistic gut is generally “leaky,” these peptides can pass out of the gut and into the bloodstream, ultimately crossing the blood-brain barrier. These peptides mimic neurotransmitters (the chemicals responsible for communication between nerve cells) and cause all sorts of neurological mischief.

The premise of the diet is simple: remove the source of the opioid peptides in order to reduce the neurological effects. In addition, many researchers believe that gluten and casein irritate the intestines of sensitive children, so removing them from the diet promotes intestinal healing.

The diet gained widespread popularity when the emergence of the Internet made it possible for vast numbers of parents to compare notes and share information. There are hundreds of anecdotal reports of improvements, sometimes dramatic, in ASD children who avoid these proteins.  For many children, however, removing these peptides will not be enough to fully heal the gut and further modifications in diet are needed.

http://www.livingwithout.com/issues/2_3/Special-Diets-For-Autistic-Children-1236-1.html

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Stay tuned for the exciting Part 2 of 3, coming in a few days!  [try not to let your anticipation of it be too distracting . . .]