In So Many Words

I last posted about my son’s biomedical treatment last October, when I was fed up with the DAN! doctor we were trying to see and decided to cancel our follow-up appointment (that had been rescheduled more than once due to testing delays).

Well, since then, we were able to go to the outreach clinic held by Pfeiffer Treatment Center, which is a non-profit center specializing in treating biochemical imbalances. They are located in Warrenville, IL, but hold an outreach clinic twice a year in Annapolis, MD.

I took Michael down there on March 9th, the day after his first chair-throwing incident and the day before his 8th birthday, and I was very impressed with the whole operation. They basically take over a floor of a hotel and you see the nurse and the doctor, who is a DAN! doctor by the way, and also give a urine sample there. The blood draw was done at a LabCorp literally two blocks away.

The doctor told us that he suspected pyroluria based on Michael’s symptoms, but that we would know more once the testing was done. He gave me a starter supplement and a short list of other supplements to use until we heard back from them. He also had us do an OAT (organic acid test) to check for yeast or bacteria and get a X-ray to check for fecal retention.

Here are the supplements we started/continued after the first visit:

• Pfeiffer starter supplement (includes Vitamin C, Vitamin E, B6, Magnesium and Zinc)
• Evening Primrose Oil (we did transdermal, this oil is an Omega 6 and recommended with pyroluria)
• GABA for calming (we didn’t really see any effect from this one)
• Continue the Zeolite
• Continue probiotics once the OAT sample collected
• Continue melatonin for going to sleep
• We added L-Carnitine after the Xray showed mild to moderate fecal retention as it is supposed to help with motility

I started very slowly with the supplements, just juice at first and then mixing in a little bit at a time until I got to the dosage. He has been surprisingly compliant, for which I am very thankful. Hopefully that will continue as we start his customized plan. I’ll post more about his results later.

Well, I didn’t get much checked off my list this last week – too many other things kept popping up that needed to be done. After going round and round with the DAN! doctor’s office, I have decided to get copies of all the test results we haven’t met to review yet and then cancel the follow-up appointment. It is just not worth the hassles I am dealing with every single time I need insurance paperwork done properly or even to talk to someone at the office. The office manager has been very helpful, but even she can’t make up for the other frustrations I have experienced.

Now I am trying to figure out what route we are going to go. I do have Michael taking a small amount of Essential Fatty Acids as well as Melatonin at bedtime and Liquid Zeolite, which we are trying out with a few other local parents. We are going to be tracking the zeolite on a weekly basis, so I can’t add the other supplements I was holding until the organic acid test was sent in (which is now on hold anyway!).

We have a behavior plan meeting Thursday morning with the school – very excited about that – and our wraparound agency is working on getting a new TSS b/c the current one is just not up to par with what we need.

With everything going on, I think reorganizing my to do list into more of a schedule would make sense and help me to feel less like I am trying to do too many things at once. Hopefully, this will move me closer to a routine like the one that was working so well last summer.

This is where the To-Do List normally goes, but I just still haven’t really figured out how to organize my schedule. So I guess this is really just a Biomed Update!

The behavior plan meeting went well. I’ll post more about that soon. Right now, we’re super excited about going to see They Might Be Giants on Saturday for a kids’ show – although it is supposed to be yucky and rainy. My sister-in-law and her family are planning to come. Two of their girls haven’t been feeling well, so we are hoping they will be better by the weekend.

For more To-Do Tuesday, visit Crazy Adventures in Parenting.

We’re in the mainstream now, baby! I just saw this clip on Age of Autism and felt like I was in the twilight zone (in a good way).

Listen to this short clip where Dr. Oz discusses inflammation of the brain as contributing to autism and how simple dietary changes can help.

Here’s a link to the Dr. Oz on Autism video if you can’t see it here.

For more information on treating children with autism through dietary changes and other biomedical interventions, visit www.autism.com.