Dr. R is out of town on vacation this week. We met with his main nurse practitioner. Gavin is clearly delusional there is no arguing that. What she thinks is happening is the anti-psychotics haven’t had enough time to work. We just increased the dose about a week ago. Gavin typically responds quickly to medication increases or changes but maybe it’s just taking longer. She thinks that we are just seeing the schizoaffective disorder right now because it’s not properly medicated.  Hence the “seeing things” that aren’t there.

She could not advise one way or the other as to whether or not the Cleveland Clinic is needed because she hasn’t seen Gavin since last year. She also doesn’t want to mess with his medications until Dr. R gets back because of the increased risk of the Paroxysmal Choreoathetosis coming back. So right now we have to wait. It’s honestly frustrating cause I feel we are no better off now then before. If this is truly just the schizoaffective disorder then there is nothing to “really” worry about right now. We just need to find the right meds. However, if it’s delirium then that could be a different story all together.  So basically we have more questions then answers.  Unfortunately, this is par for the course in our world. Rarely do we EVER get a straight answer.  We see Dr. Patti on tomorrow and we’ll see what she thinks. Maybe talk to his pediatrician and seek some more advise. Getting Gavin into a place like the Cleveland Clinic works much, much better when everyone is on board. At this point we have to wait until we have given the meds enough time to help. At least another week or so…..sigh

Thanks for all the prayers

-lost and tired