Another Specialist Speaks

The holiday season provided us with a gift.  Owing to a cancellation, our February appointment scheduled back in August with yet another world-renowned expert was moved up to yesterday (Thursday).

Our son was in tip-top form: agitated, upset, violent, non-communicative - a full stage show complete with scratching, pinching and screaming. After he settled down a little, he did say to me "I want to go home". My wife had to take him home after about 20 minutes. My son took no comfort in being at the clinic and apparently was quite upset about the situation (maybe that specific one or his own or both).  I sat with the Doctor and gave him the background, answered his questions and described the situation.

The doctor said that my son's situation was unusual but not unheard of. He shared the following:

1. My son's brain may be in a state of flux right now. This could be somewhat natural changes or perhaps heralding a permanent regression of his capabilities
2. The medications that have specific and well-known effects on "normal" brains have different effects on "spectrum" brains and it is good to use low dosages and slowly raise them. He liked our approach.
3. If my son's brain is undergoing some sort of change then we are treating it using medications when it is in a state of flux and the effect of medications becomes even more unpredictable. If we think my son's condition has stabilized (at awful) then it might be valuable to go back and try the anti-psychotics again - low and slow. He said that in his experience, anti-psychotics of one sort or another are the ultimate solution.
4. He thinks that Neurontin is OK because it is well tolerated but noted that it is mild in it effectiveness. He thinks Depakote might be a better mood stabilizer even though it requires blood monitoring.
5. He thinks higher doses of Klonapin might be helpful (3,4 or 5mg).
6. He thinks the MRI is a good idea if only to rule things out.
7. He thinks genetic testing might be beneficial if only to identify chromosomal or genetic anomalies that might be able to point to a specific treatment regime.

Like some of the others, he was not wholly convinced that the death obsession was the root cause and may have only been the straw that broke the camel's back - meaning this was inevitable anything could have triggered it.

He was nice and thoughtful and did his best not to shrug his shoulders and say "I dunno".  He said he would be willing to confer with our psychiatrist and even see my son on an ongoing basis or every now and then if we thought it would be helpful.

Sadness

I may have never experienced quite so deep a sadness as I am today. 

Today is my son's 16th birthday.  We are coming on a year of devastatingly reduced capacity and engagement.  It has been a year punctuated by trials of tens of medications, reducing his freedoms, limiting his travels, shrinking his world and generally taking his life away little by  little.  There have been bathroom accidents, violent outbursts and unprovoked attacks, limited or no conversation, no engagement and limited hygiene.  We're having his braces removed because he stopped brushing his teeth.  We have given him a "medic alert" bracelet because he wanders and does not speak.  He's having an MRI because we don't know what else to do.

One year.

Wasted.

Lost.

I am tired of this and I want him back as he was. Now.  What has he done to deserve this torture?