Tuesday, May 12, 2009

Enter Dr. Woeller...

We found a GREAT resource for our gaps in treatment with Grayson. We felt pretty good about our direction until we got to chelation and had some areas of question about behaviors and symptoms that come and go. We felt like we needed Dr. guidance, but don't have access to indefinite finances to visit a DAN! Dr. an hour away who has a waiting list a mile long. Just when we were belly-aching over the lack of insurance cooperation, the lack of doctors to help with these issues, the jekyl and hyde symptoms we experience....a fellow blogger told me about Dr. Woeller at AutismActionPlan.org. He is a DAN! Dr. in California who has dedicated his last 10+ years on biomedicine for the autistic community. Now, while Grayson is not autistic, he does share the exact same health issues with the autistic and I DO believe that he was headed down the path to mild aspergers syndrome. So back to the point, Dr. Woeller!! He has a website dedicated to parents just like us, with kids who need biomedical treatment, but can't afford the many Dr. appointments that are necessary to get to the bottom of what is going to cure our kids. Of course there is a fee, but paying for a whole year with him is less than three visits with an actual DAN! Dr. He provides indefinite personal attention to every question (he even gets back to us on weekends!) and membership includes conference calls twice weekly where we can see him talking while we type questions to him, it's like being right there with him, except that I can look like I just rolled out of bed, if I want to. This is like having a doctor come visit us in our house to answer questions, it doesn't get any better than that!! This is the smartest thing we have EVER done. Now, with this comes the suggestions he has for getting to the bottom of Grayson's issues and treatments, so unfortunately this also means spending more money on tests and treatments, but at least we are doing things we KNOW he needs, rather than guessing.

So what is the latest you ask? Yes, we have been wrapped up in things here, so here is the latest. We ordered an OATS test and what is that you ask....."The Organic Acid Test (OAT) measures 62 different compounds. These are important markers regarding a wide variety of metabolic and biochemical imbalances with specific attention paid to yeast and bacterial toxicity commonly seen in autism-spectrum individuals."

Grayson's results mirrored those with autism.

I expected the high yeast, but his bacteria (clostridia) levels were frightening and shocking to us. It does explain some of the behaviors we weren't able to figure out though. Yeast typically results in a giddy, hyper, stimmy sort of behavior, like laughing inappropriately and appearing almost too happy. Bacteria normally results in aggression, frustration, and signs of stress. His stress hormones are elevated and so are his oxalate levels. More foreign language talk, right? Oxalates - Here is a link about oxalates and the low oxalate diet - http://lowoxalate.info/. So yes, we need to add or should I say, REMOVE more foods from his diet. I think it's time to consult with a nutritionist....?

So now it's time to develop a plan for treatment which may require prescription level meds to bring down the yeast and bacteria so that we can attempt to maintain them. That is going to require an actual doctor visit with someone who can and will look at the test results we have and act on them appropriately. His stress hormones need leveling out so that adds more supplements (GABA and Theannine) to the already enormous list of pills he takes in a day. They are necessary though, for him to have normal day to day functioning. His body isn't able to absorb the proper nutrients (not to mention the nasty little gut bugs who eat up the good stuff on him, grow and produce neurological toxic waste) which results in many deficiencies, hence, his symptoms. It's much deeper than that, but without getting technical, this is the gist of it.

So are you still concerned with your day to day "normal" issues like not cleaning up their toys and wanting something different to eat? Just one day in our world of chasing symptoms, popping pills, mood swings, diet limitations, chelation therapy and well, life is looking pretty sunny comparably, isn't it??

1 comment:

Jenn said...

A Google search just led me to your site and WOW - you are having the exact same issues that my daughter is! We started with the food sensitivities and now we are working on heavy metals/yeast and Clostridia. I spent the day devouring your blog - thank you for all of the wonderful information here! I can't wait to see how you go ahead with treatment!