Katie - posted on 05/11/2010 ( 4 moms have responded )
My son goes to the neurologist this Thursday. I have been a little anxious about what to expect, but also excited to get some answers. Now, I am just utterly frustrated. Right now his main tics are popping his jaw, knocking his knees together, humming, and throat clearing.
A little background: I split up with my children's father when my son was only an infant. He has had on again/off again once a week visits (about 4 hours) with Dad his entire life (lately its been on for the last 6 months or so at least.) Dad was diagnosed with a psychiatric disorder as a child and dragged through countless medications with numerous unpleasant side effects. He now has a strong anti-diagnosis and anti-medication attitude.
Dad is very against admitting there is something different about Tony. He intends to exert his legal right to be involved in medical decisions, so he can come to the appointment to convinve the doctor there is nothing wrong, that Tony can stop whenever he wants, and to sabotage any progress which could be made.
I have never said he couldn't be at the appointment. I have involved him in the entire process, getting the referral and filling out the intake paper work and family history together. But he has slowly crushed my hopes by repeatedly saying he wants to go only to hear and tell the doctor Tony is fine. I have tried to coach him that we are the parents and the doctor is the doc and that our job is to provide him what we know about Tony and ask him questions about his opinion, to no avail. I have assured him, even if it is TS that it's not a bad thing just a different thing and with the mildness of Tony's tics that medication would not be part of the plan.
If his lack of cooperation wasn't bad enough, as part of this whole dilemma, he is bound and determined to stop the tics before the appointment. He has been telling Tony if he doesn't stop popping his jaw that he will dislocate it and will never talk or eat again, followed by a what did I say about that with every subsequent tic which led to a major tic outburst. Also told him, if he kept knocking his knees they would become so bruised that he wouldn't be able to walk.
My poor kid who had been in a 2 to 3 small bursts of tics per minute lull, was nonstop ticcing after his visit with his father and extremely stressed out. My frustration level is through the roof!!!