The neurologist candy coated her results until my husband asked her to just spill it. "PDDNOS," she said.
We were confused for a second and then Harry asked, "Is PDD autism?" She said, "yes, it is. Here's a folder with info that you might want to read."
We went back to the car and I took the folder and I said, "I'm not looking at that. She's nuts. No way." I went into denial.
A month later Elias had five more seizures, one of which required an ambulance because he kept having seizure after seizure. So we decided to concentrate on getting the seizures to stop rather than deal with the whole "A" word right away.
He ended up with a lot of seizure medication. He was taking four at one time, and could barely walk. He stopped seizing but he was a train wreck. He got to the point where he couldn't move.
I felt so helpless. The whole thing was just so stressful all the time. If he got sick, I would freak out because if he got a fever, boom, he ends up having a seizure [fevers can induce seizures].
He now moved past PDDNOS into the full autism diagnosis.
We started to question everything because nothing they were doing was working. There was only so much we could take watching our son suffer so much. So, we started to take matters into our own hands.
January 2004 was when we found our DAN! doctor, Doctor Lacava. He said to start the diet. The gluten-free, casein-free diet. Then, he ran the battery of tests that we always wanted but were told no by our pediatrician. The heavy metals test, the food allergies, yeast, nutritional, everything, the whole nine yards.
It turned out he had yeast, his zinc level was extremely low and he was deficient in B vitamins and minerals such as magnesium, manganese, chromium. So, we started Super Nu Thera and cod liver oil, eventually an anti fungal to kill yeast, Methyl B12 shots and glutathione.
The first improvement we saw was sleep. I went through hell for almost four years with him being up every night. Then his focus got better and the best part of it all was his seizure count went down. He went from forty-five seizures a year to maybe one or two now.
Then we started him on an anti-viral, Valtrex. When we started him on Valtrex, speech started pouring out of him. We were blown away. Even his teacher at school asked us what we did to him, because he was totally different. He still had processing problems but the improvement with speech was amazing. He was also becoming a real ham. It was this really great comedic charm that he had, a sense of humor. Things were looking up but five months later a mother's worst nightmare unfolded.