Tics and therapy

[becjonz]

Our PANDAS doctor is insistent that my son be in therapy so as to work on dealing with his symptoms when they do flair up and having strategies to deal with them. I totally agree and initially his therapist focused on his major anxiety issues. These have improved greatly through her work and our follow up at home.

The big issue that causes a lot of social and school issues are his tics. He can be very disruptive and we have provided him with a great number of OT tools to help reduce or replace his tics with less disruptive movements. His therapist however has not previously worked with kids with tics. I don't really want to switch therapists as she is the one who told us about PANDAS and led us to a great doctor who diagnosed it. She has been seeking out resources and doing research to try and find good approaches for DS but has told me a few times that if I know of/hear of anything that has been an effective therapy tool for a kid with tics to pass it on. I thought I'd put it here to see if any of you had a positive experience with strategies or therapeutic approaches that help kids recognize when they are ticcing and then reducing or replacing that behavior.

 

Thanks!

[lfran]

You might want to look into Habit Reversal Therapy. The Wall Street Journal just did an article on it yesterday -- here's the link.

 

http://online.wsj.com/article/SB10001424052748704913304575371502395023416.html

 

Our PANDAS doctor is insistent that my son be in therapy so as to work on dealing with his symptoms when they do flair up and having strategies to deal with them. I totally agree and initially his therapist focused on his major anxiety issues. These have improved greatly through her work and our follow up at home.

The big issue that causes a lot of social and school issues are his tics. He can be very disruptive and we have provided him with a great number of OT tools to help reduce or replace his tics with less disruptive movements. His therapist however has not previously worked with kids with tics. I don't really want to switch therapists as she is the one who told us about PANDAS and led us to a great doctor who diagnosed it. She has been seeking out resources and doing research to try and find good approaches for DS but has told me a few times that if I know of/hear of anything that has been an effective therapy tool for a kid with tics to pass it on. I thought I'd put it here to see if any of you had a positive experience with strategies or therapeutic approaches that help kids recognize when they are ticcing and then reducing or replacing that behavior.

 

Thanks!

[Chemar]

just do be cautious as in some cases tics are not habits...they are often INVOLUNTARY neurological reactions to either a neurotransmitter or to some trigger and trying to get a child to suppress them can be like shaking a soda bottle with the lid still in place! and then when the release does come it can be very explosive!!

 

we found cognitive behavioral therapy by far the most beneficial way to help my son manage his TS tics/OCD etc in socially appropriate ways. This involved more substitution than suppression and so the neurological release needed was not blocked, but ways were found to channel it in a more socailly acceptable way.

 

I guess the crux is what the root cause of the tics are in terms of how best to help deal with them in social environments

[becjonz]

just do be cautious as in some cases tics are not habits...they are often INVOLUNTARY neurological reactions to either a neurotransmitter or to some trigger and trying to get a child to suppress them can be like shaking a soda bottle with the lid still in place! and then when the release does come it can be very explosive!!

 

we found cognitive behavioral therapy by far the most beneficial way to help my son manage his TS tics/OCD etc in socially appropriate ways. This involved more substitution than suppression and so the neurological release needed was not blocked, but ways were found to channel it in a more socailly acceptable way.

 

I guess the crux is what the root cause of the tics are in terms of how best to help deal with them in social environments

Thanks for that Chemar. This is my constant concern- I spent so much time trying to convince the school that my son is not just being a smart ###### by tapping his feet even after being asked not to. Principal refused to take language out of his educational support plan that "Matt will reduce his tics so as not to disrupt class" Grr! I even gave him more appropriate wording but wouldn't change it. His doctor wants it to not be a habit when PANDAS is under control and also feels that abx is not full treatment- therapy has to be a piece as well. Maybe this is why his therapist and I struggle since he honestly isn't aware of them. She wants to use CBT to get him to clench fists rather than slapping thighs but will drawing more attention make him do it more? Also he has been brought to tears with the effort of focusing so hard to control tic that he then can't focus on his work. There never seems to be easy answers with PANDAS just puzzles of sorts.

[kimballot]

Sending you a PM

[tygertoo]

Our PANDAS doctor is insistent that my son be in therapy so as to work on dealing with his symptoms when they do flair up and having strategies to deal with them. I totally agree and initially his therapist focused on his major anxiety issues. These have improved greatly through her work and our follow up at home.

The big issue that causes a lot of social and school issues are his tics. He can be very disruptive and we have provided him with a great number of OT tools to help reduce or replace his tics with less disruptive movements. His therapist however has not previously worked with kids with tics. I don't really want to switch therapists as she is the one who told us about PANDAS and led us to a great doctor who diagnosed it. She has been seeking out resources and doing research to try and find good approaches for DS but has told me a few times that if I know of/hear of anything that has been an effective therapy tool for a kid with tics to pass it on. I thought I'd put it here to see if any of you had a positive experience with strategies or therapeutic approaches that help kids recognize when they are ticcing and then reducing or replacing that behavior.

 

Thanks!

 

 

My son has tics and OCD - he has been on abx for 60 days (this is the only treatment we have done other than therapy). CBT has helped quite alot in dealing with the OCD but the tics are tough because as it was described to me (an itch that they have to scratch). My son does a great job while at school in controlling them but when he would get home it was a tic fiesta (release of the tics). now 60 days in with the abx, his tics have decreased dramatically along with anxiety...some ocd hanging out but really not bad...alot of question asking and some small rituals. The one thing that seems to help his tics tho when they flare (especially when he plays baseball) is a dose of Motrin...works like a charm, I was amazed! Dr T says that he can be on Motrin daily if it helps...I don't do that but before a game he gets his dose to keep the tics at bay...

 

Good luck and hang in there!

Karen

[purple66p]

My son's tics have definitely gotten worse over the last year. We're 3 weeks into antibiotics and, if anything, they are worse. I know we get a lot of strange looks when we go out to eat! I've noticed that they come and go during the day, but haven't been able to identify a trigger or pattern. Unfortunately, he can't take Ibuprofen because he is on lithium. Maybe one day we'll be able to wean off the psychiatric meds.

My son has been in psychological therapy for 6 years...sigh. We mostly work on anxiety and behavior in the hopes that reducing anxiety will reduce OCD and tics.

The thing that has helped most lately has been starting OT and learning some relaxation techniques there.

[fuelforall]

Tics are worse indeed. My co-worker's PANDAS kid has been saying how bad it's been for her son. She's never seen it so bad.

I wonder if extreme heat can provoke motor tics of such severity.