Two Years on TSO
My son (about to turn 18) was on TSO (2500 bi-weekly) for two years, and during that time there was a complete elimination of aggression, agitation, tantrums, melt-downs, OCD, etc. (see the rest of this site for the full history). For the last 8 months or so he has been increasingly quiet, and developed small “absence” seizures lasting 30 seconds or so, where he would just stop what he was doing and stare, with one arm shaking, several times a day. He had some mildly abnormal EEG’s as a child and since a fairly significant percentage of autistic kids develop seizure disorder, especially as they enter adolescence, we had him worked up with in-hospital sleep studies and treated with anti-seizure meds. The extreme quietness continued, punctuated by days or weeks when he would talk normally, great eye contact, almost acting in many ways like a typical teenager. We were (and still are, when these times occur), completely blown away by it. But I was concerned that perhaps TSO was in some way contributing to the extreme quietness. Perhaps it was a dose issue, or perhaps he did not even need TSO anymore and its continued use was somehow dampening his immune response when it did not need to be, Perhaps the symptoms that we were seeing, which could be interpreted as depression (fatigue, malaise, quiet, lack of interest in things, etc) were somehow connected to the altered immune response. There is growing scientific interest in a possible connection between cytokines and psychiatric disorders, including depression. Meanwhile, the anti-seizure meds eliminated the mini-seizures and he was weaned off them.
In an effort to confirm if TSO was playing any part in this I decided to stop TSO for an extended period. We stopped for 10 weeks - no weaning period, we just stopped. What we saw was as follows: Just as before, the periods of extreme quiet and fatigue were still happening, punctuated by days of unbelievable relatedness, eye contact, full language, appropriate behavior, etc. There did not appear to be any change with respect to removal of TSO, with one huge exception. Starting at about 8 weeks we began to see the agitation and OCD return. For the first time in two years he started hitting himself again. His hypersensitivity to noise returned, as did the beginning of his OCD behaviors. Life began to return to pre-TSO status. He was headed towards becoming unable to go out anywhere in public because of his violent melt-downs. So, we started the TSO again, and he received 2500 ova last week. Since his original response to TSO seemed to take 8 weeks, and the beginnings of the full return of symptoms began at about 8 weeks off it, I am getting the sense that at least in my son, the immunoregulatory aspect of TSO takes about 8 weeks. I expect the next couple of months for us will not be any fun.
I will post again soon, hopefully to report that TSO is working again.