Okay, so I realize now that I neglected to give an update from Ethan’s June visit with Dr. Rao. Oops! (Read my last entry about our biomedical treatments here, and the first entry here.) We made a few adjustments to his supplement regimen at that time and did another chelation (pronounced: key-lay-shun) trial. That trial was a combination of IV EDTA and Oral DMSA. Ethan was a super champ and handled the butterfly needle like a champ.
Today we went in to follow up with Dr. Rao and review Ethan’s entire biomedical program. It went very well. When Dr. Rao came into the room, Ethan was watching a movie from the exam table, with his crocs on the floor.
After greeting one another, Dr. Rao asked, “Ethan, are those your shoes on the floor?”
Ethan said, “Yep.” He didn’t take his eyes off of the TV.
Dr. Rao said, “They’re nice. Can I wear them?”
Ethan stopped watching the TV, smiled and made eye contact while he said, “No. You’re a silly doctor Dr. Rao!”
Again, Dr. Rao was impressed with the verbal and non-verbal interaction with Ethan and went on to tell me that he’s just as thrilled as we are with Ethan’s overall progress. (Ethan has started watching his peers more this summer and has even started to think about what other kids think about him! This is so BIG! Just last week before a play-date, Ethan and I were washing his hair with a new shampoo and he told me that it stinks and that Carter would make fun of him when Carter smells it. I was amazed that he was thinking and caring about such a thing!)
Back to today . . . We reviewed several blood and urine test results to monitor what Ethan’s supplements and diet are doing for his system. As I suspected, Ethan’s zinc levels had gone from being way too low in December to being too high. We’re going to decrease how much we supplement so we can find the perfect balance of zinc to copper, which should be 1:1.
Also, Ethan has developed high glutamate, the same nasty stuff that is in monosodium glutamate (which we avoid like the plague.) So, it seems that he must be getting too much red meat, tomatoes and eggs in his diet. We’ll cut some of those and see if that level will taper back off. (The increase in glutamate could be to blame for some of Ethan’s overly emotional outbursts and meltdowns.) Regarding the outbursts, we’re also going to add GABA and Phosphatidyl Choline to Ethan’s daily supps to help level him out. I’m thinking that starting school and getting back into a very structured, regular routine will help with the outbursts, but I’m glad to have the other supplements in place before he goes back and has to adjust to being in school all day, every weekday.
Finally, we got the results from the IV chelation trial from June. The Urine Toxic Metals tests revealed the best yet pull of Mercury and Aluminum with about the same amount of Lead pulled. So, today we upped his dosage of IV EDTA and Oral DMSA to see what kind of results we can get. He was so brave; he even put both arms in the air when it was all over and told the nurse, “That chelation was AWESOME!” which she said, “made her day.” Once we find the “right” dosage for Ethan (which pulls the most metals from his system with the least amount of side effects) we will start a regular schedule of chelation. So, we’ll go back to see Dr. Rao in late September to review the results from today and discuss progress again.
Wish us luck with the GABA and Phosphatidyl Choline!
