Monday, May 27, 2013

My Time at Autism One

I just returned from the Autism One conference yesterday evening. I learned so much. I highly recommend that anyone who has a child with autism go to this conference, yearly if you can. But, at least once if you go yearly.

This was my first time. I am already thinking of what it's going to be like next year. And I know it will be just as incredible next year as it was this year.

For me this biggest deal and most stress was from not knowing where I was going and exactly how to get there. I have no sense of direction and I hate city driving. Particularly Chicago. I found my hotel, and it turns out when I got to the front desk, it was the wrong hotel. Go me.

Anyhow, I felt much better once I checked in (to the correct hotel), got all the stuff in my room and found the conference. I had a little bit of time to wander around before I went to my first presentation. I walked in at the tail-end of one of the presentations. I was sorry I missed it, because it looked good.

Before I talk about any of the presentations in specific, I want to make a few comments about the conference in general. I am socially awkward unless I know people. And in large groups, that awkwardness is exacerbated. Many of the people I saw at the conference were meeting up with people and already knew people who were there. I didn't, so I did feel kind of lonely at times. But, I wasn't really there to socialize, I was there to learn as much as possible.

My favorite things from the conference (excluding all of the excellent presentations where I was trying to learn things) were the keynotes. It felt amazing to be in room FULL of people who understood what it was like to have a child with autism. People who understood the impact of what we eat, people who understood how toxic and poisoned our world is and how important it is to change that - maybe not for everybody, but at least for your family. So inspiring and so exciting and so motivating.

I got to meet my TACA mentor in person, and she was just as nice there as she was on the phone. Very cool to see her.

I also had lunch with Buzzy's homeopathy practitioner. She was very cool and easy to talk to.

The rest of the time it was presentation after presentation after presentation. I ate every so often and I did get to see the vendors as well.

Picture from Autism Furniture website.

I wound up getting a pillow chair for everyone to use. You can find it here if you want to read more about it - Nesting Chair. It feels fabulous. It came with a pillow meant to be used as an ottoman and another two pillows. It's a brown suede-like material. Apparently brown is my favorite fabric/furniture color, because it matches well with our couch and the little chair I got Buzzy for Christmas. It was meant for the kids, but I am parked in it right now. It gives us an extra seat in the living room. I must say, it was one of my better purchases. I got a good deal on it, because I bought the floor model from the conference (and didn't have to pay shipping, because I drove it home with me). I had to put it in the back seat of my Camry, and I smashed it down pretty good. But, as I drove it kept expanding and by the time I got home I could barely see out of my rear windshield. Ha ha!

I will talk more about some of the things I learned in a later blog post. For now that's all I have in me.

Friday, May 10, 2013

Getting rid of the Nasties

We had our homeopathy appointment a few weeks ago. It was really interesting. I spent a little over 2 hours talking about Buzzy and his behaviors, symptoms, and even tried to guess at his feelings.

Two days later, we got a bill. And after that was paid, we received an email detailing the remedies we needed to purchase for him (and I was to take a few of them) along with how to dose them. I had them ordered that night.

Where the goods are coming from. 

Alas, they come from the UK. So, I have been impatiently waiting for them. I think it's only been a week (probably not even a week). That doesn't stop me from obsessing. I could talk about which specific remedies were suggested for is, but the understanding is that they are pretty much very specific to our situation and his issues. That being said, he will be taking Bovista (in varying potentcies), a Bach remedy (mustard), and Borrelia (for Lyme). I was a bit surprised by the Lyme, but we will see what it does. I was also told to have a Candida remedy on hand for when yeast flares. She said it may not, but it probably will sooner or later. Sounds about right to me.

We have decided for now to stop the camel milk. His poop wasn't really getting any better and it was still kind of mushy. So, we decided to hold off. I was getting tired of clean up.

image from NY Daily News

We will come back to the camel milk after we get some of his other issues taken care of. Which I will get to next.

We saw Buzzy's biomed doctor (okay, her PA) yesterday. We went over the urine test results. Basically, he has a huge amount of Clostridia bacteria in his GI tract. It's causing some of his verbal stimming issues. And aggression, which fortunately we don't see too much of. We had two options: we could use Flagyl to get rid of it, or we could try a gentler (and longer) course of herbal stuff. Which happened to also taste bad. And it would take a month to see if it was working. And it would take about 3-6 months for treatment. I am all for the gentler method. Time isn't too much of a consideration. BUT, I wasn't sure I could get him to take the herbal antimicrobials. So, after a lot of agonizing and thinking, I went with the antibiotics. We are doubling his probiotics in hopes that will help him during the course of this.  I am terrified of the yeast taking over. That's why I was reluctant to do the antiobiotics. Anyhow, we are dosing him three times a day for two weeks. He is willingly taking it, so that's good. I am hoping the die-off isn't too intense.

Nasty little buggers. Image: Wikipedia

We were also told to add activated charcoal to help mop up the toxins from the dying bacteria. Fortunately  I just got through trying that when we were doing camel milk (I didn't see it make a difference in his stool), so I have some on hand. 

We also are doing a urine porphyrin test. They will be looking at heavy metals in there. We won't be able to do anything about the heavy metals until his gut is healed, but it will be interesting to see what comes up. I feel he will test high for heavy metals. We will know in about 3 weeks. We go back in about a month and half to see where things are. 

And today (and yesterday) my son actually asked a question, "Where bear?" and this morning, "Where iPad go?" I am so proud and so amazed at the progress he is making. He is working so hard, and it's wonderful to hear his voice. There was a time I wondered if he would ever able to tell me his thoughts. And there was a time I wondered what sorts of thoughts were in his head. Now, I am glad I know. Even if his thoughts are "Eat poop" (and it sounds more like "poot") and he expects us to say "Nooo! Don't eat poop!". 

I wouldn't want to...we know it has clostridia in it.