the medical dilemmas

We went for a meeting with Liam's teacher yesterday to discuss what he needs to be doing to make sure that he's working up to the best of his ability. Homework for Liam takes hours to complete. It is not an easy sitting down and getting it done. I remember fifth grade homework for Diane usually taking about 15 minutes. With Liam, the same amount takes several hours.
One of the suggestions that his teacher gave us is to get him CBT or Cognitive Behavioral Therapy.  From the website of the National Association of Cognitive Behavior Therapy:

      Cognitive-behavioral therapy is based on the idea that our thoughts
    cause our feelings and behaviors, not external things, like people, situations,
    and events.  The benefit of this fact is that we can change the way we think to
    feel / act better even if the situation does not change.

There is also a therapy for Tourette Syndrome called CBiT or Comprehensive Behavioral Intervention for Tics that is supposed to be very effective in reducing tics in some TS patients. From the TSA USA website:

Comprehensive Behavioral Intervention for Tics (CBIT) is a new evidence-based non-pharmacological treatment option for tic management developed by members of the Tourette Syndrome Association (TSA) Behavioral Sciences Consortium.
CBIT procedures combine elements of habit reversal training with psycho education and function-based behavioral interventions to teach patients effective tic management skills.

Great! So there's all these treatment options to help my child with dealing with his tics with a cognitive behavioral approach, right? Not so much. When we first went to see Dr. Brown (our neurologist) and brought up CBiT with him, he said that he didn't think that there was anyone working with it nearby who he could recommend. It was very labor intensive and unless done very well, not very effective. And that many people who had had success with it went on to larger cities to work with larger populations and more prestigious programs. I placed a call to the Yale Child Study Center at Yale New Haven Hospital in Connecticut where they do CBiT. I asked the woman who answered if they accept my insurance. I was told that they do not take insurance, the fees are all paid out of pocket and then you can submit to your insurance company to see if they will pay the insured back for any of the out of pocket expense. The program there appears to be once a week for 6 (sometimes shorter) to 8 months.
I also placed a call to the OCD Study at Bradley Hospital in Rhode Island. I know that they do CBT therapy and was told by a friend whose son was exhibiting tics related to his OCD that the treatment that he received there helped his tics completely diminish. I explained to the woman that Liam's primary diagnosis was TS comorbid with ADHD and to a lower level OCD and Anxiety and asked if they do CBT therapy with TS kids. She said that she was not aware of this, but would speak to a therapist and get back to me.
I then went to my very best source, the wonderful President of our local TS chapter who is looking into it for me with the Dr. that we work with at the local TSA chapter and also through his notes from the national TSA conference.

I find it sad that it's so easy to just keep prescribing these kids different meds when there are non-pharmaceutical therapies out there that are proven to work, yet it's so hard to get them. The recent Discovery Health Network documentary on TS alluded to this as well showing a surgery that greatly diminished one child's tics with great out of pocket expense to the family. Looking forward to a hopeful answer from our local TSA.