Taking the Scenic Route

Autism, saw a lecture on enzymes

29th February 2008

Autism, saw a lecture on enzymes

posted in Autistic Life, Biomed, Friends |

Last night I went to a lecture at one of the local Health Food Stores, where they had Karen L. Defelice, the author of Enzymes for Autism, there.  She had written an updated version and was doing a book tour.  It was really great. 

I had the older book on my shelves, and had skimmed through it, and it was something we were considering doing, but I didn’t really understand it well enough to feel comfortable doing it.  Listening to her lecture, all of this old information I learned in my college A&P class flooded back into my brain, and it clicked for me.  I can’t believe I was struggling with it before. 

We were going to start trying to implement a GFCF diet for him soon, although we weren’t sure how we were going to be able to afford it because we were going to have to put the whole family on it.  To add to this, I generally am not very comfortable with removing entire food groups, even in healthy adults.  Plus, he is a kid that really would starve rather than eat something he doesn’t want.  He is already pretty thin, and I was genuinely concerned about ending up with a g-tube before it was all over just to get some nutrition in him.  All the research I have done with GFCF says that you usually also need to eliminate Soy, and often Corn, and there is often a rise in other food intolerances, and that is a HUGE concern when I have a family history full of allergies.   Oh, and the local Developmental Ped doesn’t really support diet changes and he would need to be under medical supervision to do it because he is so skinny already.

So, a diet like this involves things like having to make Almond / Rice / nut milk yogurt for him from scratch to replace the yogurt he eats (one of his few foods), and trying to find bread he will eat using obscure flours (some of which I can grind in my Vitamix) and trying to get the science of bread making down while using alternative, well, everything.  I can’t afford to buy the loaves from the grocery store.  (that alone would almost be our entire food budget, so home made was the only way to go for us).  It is an expensive PITA, but we were gearing up to try it.

Anyway, I digress.  Back to the subject at hand.  The enzymes, although they can be used with the diet, are usually successful without the diet, and those that are on the diet can often return to eating “regular food” again after using the enzyme regimen.  The big plus, as opposed to the diet, is that we will know in a much shorter amount of time whether it is worth pursuing.  In a month, at the most, if there isn’t any improvement (that can be dismissed simply by maturity), then it can be dropped.  The diet takes a lot longer to see results.

Also, if it is working, we can then add in enzyme therapies (along with some allopathic/Western medicines) to see if there is a yeast, viral, and/or a bacterial overgrowth, all somewhat common in autistic kiddos. 

I really don’t expect any dramatic things, but want to make sure that if he is in pain from gut issues, that he feels better.  There are a lot of gut issues in my family especially, and there are some related things in Zach’s family (things like migraine headaches, IBS, arthritis are related heavily to gut issues and can be addressed with enzymes, and although my family tends to have it all, Zach’s family does have some here and there too)  I know how much pain my mom was in for much of her life with gut issues, and if I can prevent that for my kids, I will do whatever I can.  I am thinking of trying it myself, actually, because there are a lot of things on “my list of complaints” that look like could be helped.  First Zane though…we are really going to be struggling to afford his, and anything else is can be explored later. 

I won’t deny that I have a spark of hope that it will produce more dramatic results, but I just don’t want to focus on that.  I want to focus on him feeling better, because that is what is most important.  At any rate, we went back to the HFS and bought 2 bottles of enzymes, the first step in the process, and started giving them to him today.  There is zero reaction so far, either negative or positive.

On a different note, the meeting itself was interesting.  I didn’t realize just how many people I knew until I got there and knew about 10 people there by name, and recognized some others.  I sat next to Carrie, Zane’s first ST (who’s wedding we went to), ran into the Grandma of the girl Zane has been doing friendship group with, and saw quite a few people from the support group. They also gave out the book to everybody attending, so I didn’t even have to buy the new book.  We also learned that the person who wrote the book does all of the touring on her own dime, and refuses to take freebies from the products she mentions in the book because she wants to remain objective.  As she put it, “I have a job, this is what I do to help others, I don’t want to get paid for this.” and “the only reason I can do this is because my boys (now teens) don’t have to be scraped off walls”, although she is not sure she enjoys teaching them to drive.  lol.

This entry was posted on Friday, February 29th, 2008 at 7:24 PM and is filed under Autistic Life, Biomed, Friends. Both comments and pings are currently closed.

There are currently 3 responses to “Autism, saw a lecture on enzymes”

  1. 1 On February 29th, 2008, SarahAriella said:
       

    Please keep us informed with how it all goes for Zane.  We tried the GFCF diet but like your son, ours would literally rather starve than eat the allowable foods.  Big Guy wasn’t skinny but both his pediatrician and allergist admitted that if we held out much longer, we would have to admit him to the hospital and I wasn’t willing to go through that with my husband at sea.  Having moved around so much over the years, we have seen dozens of developmental peds, neurologists, allergists, dermatologists, psychiatrists, psychologists, and countless other specialists and they all told us the same thing….they had not seen any children in their practices show drastic or even noticable improvement on these diets as far the autism goes.  But that doesn’t mean that the kids didn’t FEEL better.  My guy has some digestive issues, but they seem to be the exact opposite of what other kids with autism are facing so who knows.

     
  2. 2 On February 29th, 2008, sassafras007 said:
       

    Thanks for making this post. As a teacher I found it very interesting. Thanks again, I hope everything works out and goes in the right direction for your family!

     
  3. 3 On March 1st, 2008, feebeeglee said:
       

    I had the same issues w gfcf as yall. i will be watching this space closely for your updates!

     
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