Jump to content
ACN Latitudes Forums

Recommended Posts

My son is 12 and was diagnosed with TS when he was about 8 years old. They have waxed and waned over the years and it is never severe, but recently, they have gotten a lot worse. He never really had a vocal tic, but now he has one where he sounds like he is making a "farting" sound with his mouth. (sorry, but I don't know how else to describe it). It is far worse when he gets home from school, since I think he tries to supress it most of the day. We recently got into a program at Yale, and they told us about Habit reversal therapy.

I was curious to find out if anyone has tried this with their child and if it was successful. He also has some anxiety, depression and OCD, so they were also thinking of trying out some meds, which I am scared to do, but I do think it might be necessary.


I have read about how, in most cases, the tics increase during puberty and then seem to get better. I am sure he is starting puberty and I always thought his tics were worse when he was going through a growth spurt.

 

I would love any feedback


Thanks

Link to post
Share on other sites

Hi - yes, he was actually diagnosed with Pandas as well and was treated with Antibiotics for several years. I recently took him off of them based on a decision made by myself and some doctors. I think he can get worse with the addition of any infection, but the doctors and I agree that the other issues are separate from Pandas. It has been a long road with ups and downs and a lot of different issues that come and go. It is very difficult to diagnose him with anything specific due to the fact that he has a little of everything but not a lot of one thing - if that makes sense.

Link to post
Share on other sites

Hi - yes, he was actually diagnosed with Pandas as well and was treated with Antibiotics for several years. I recently took him off of them based on a decision made by myself and some doctors. I think he can get worse with the addition of any infection, but the doctors and I agree that the other issues are separate from Pandas. It has been a long road with ups and downs and a lot of different issues that come and go. It is very difficult to diagnose him with anything specific due to the fact that he has a little of everything but not a lot of one thing - if that makes sense.

We have never done HRT, however, I find it very interesting and may look into it as a therapy for my son (DS13). I googled it last night after reading your post. There is good research supporting the effectivness. It's a behavioral therapy like ERP for OCD. Except targeted more at tics. There are anecdotal reports from people who have done the therapy and they report success and recommend it. Not a drug so it should have no side effects:) "Hard work" for child but good, lasting, life long effects if done correctly. I can't see a down side if your son is going to have qualified practitioners to administer program as suggested by program at Yale?

Link to post
Share on other sites

Hello,

My 12 year old daughter has just completed CBIT (behavioural intervention therapy for tics) - pretty much same jist as HRT. She has had amazing success at it. She has tourettes, adhd (inattentive type) and anxiety.

She has had tics since 5 years old. We have tried, diet, vitamins, naturopaths, osteopaths, homeopaths, integrative doctors, metal detox, and a year of antibiotics for PANDAS treatment. All with various levels of success. However, she was accepted into the CBIT program in October and has gone every week to the hospital clinic that specialises in it. She also has to work on it everyday at home/school/dance. The clinic also does a lot of therapy etc to get at the root of her anxiety - which she/we didn't even realise she had anxiety. She has just graduated from the program last week. She is amazed at how tic free she is and how she can stop a tic if she feels it is going to start. With Tourettes - you can never cure the tics - but she is able to do a competing response when she feels the tic coming on to stop it before it becomes a noticeable or problematic tic. In turn, the need to tic has greatly reduced.

 

She worked on a neck roll that would leave her in pain, a neck thrust, a back bending tic, a breathing tic, a facial grimace, arm snapping to name a few.

She has done remarkable at it. We were told they usually don't start people on this program until they are an age to really understand it. I also have an 8 year old with tourettes and OCD but they said she was too young to start the habit reversal properly. If started to young - it could cause more anxiety.

 

It is a lot of work - but in her words SO worth it. She is the happiest and most carefree I have seen her in years. We went to a hospital in Toronto, Ontario to work on it.

Link to post
Share on other sites
  • 2 months later...

Hi,

 

My son was diagnosed with Sydenham,s Chorea at age 7. When we moved to the states 2 years later the Dr.'s here said it was Tourette's. Regardless, where one condition begins and the other ends is a blurred line. Starting a new school and the associated stresses made his tics much worse. We found a psychologist in Weston, Fl who worked with him on habit reversal. Although his tics did not completely disappear they did lessen quite substantially and the point being that the psychologist was attempting to give him lifelong skills to handle some of the triggers that set him off. Unfortunately, my son only saw him for about 6 months before we moved to VA but he did help. My son has been great for the last 18 months until 2 months ago when, after a very stressful ordeal at a summer camp where he was bullied, they came back with a vengeance. We are now in VA and are struggling to find someone who deals with HRT. While we feel this is an appropriate route to go to help our son in the long term it does not really help in the short-term and so we are also looking for complimentary support ( environmental/holistic/natural).

Link to post
Share on other sites
  • 1 month later...

Hello,

My 12 year old daughter has just completed CBIT (behavioural intervention therapy for tics) - pretty much same jist as HRT. She has had amazing success at it. She has tourettes, adhd (inattentive type) and anxiety.

She has had tics since 5 years old. We have tried, diet, vitamins, naturopaths, osteopaths, homeopaths, integrative doctors, metal detox, and a year of antibiotics for PANDAS treatment. All with various levels of success. However, she was accepted into the CBIT program in October and has gone every week to the hospital clinic that specialises in it. She also has to work on it everyday at home/school/dance. The clinic also does a lot of therapy etc to get at the root of her anxiety - which she/we didn't even realise she had anxiety. She has just graduated from the program last week. She is amazed at how tic free she is and how she can stop a tic if she feels it is going to start. With Tourettes - you can never cure the tics - but she is able to do a competing response when she feels the tic coming on to stop it before it becomes a noticeable or problematic tic. In turn, the need to tic has greatly reduced.

 

She worked on a neck roll that would leave her in pain, a neck thrust, a back bending tic, a breathing tic, a facial grimace, arm snapping to name a few.

She has done remarkable at it. We were told they usually don't start people on this program until they are an age to really understand it. I also have an 8 year old with tourettes and OCD but they said she was too young to start the habit reversal properly. If started to young - it could cause more anxiety.

 

It is a lot of work - but in her words SO worth it. She is the happiest and most carefree I have seen her in years. We went to a hospital in Toronto, Ontario to work on it.

 

This is so great to read! My 11 year old daughter will be starting the therapy next week. The tics have ramped up a lot since school started and has developed 2 new tics since going back - an eye rolling tic and a hand shake tic. I really hope that she gets a lot out of it. Thanks for sharing her experience :)

Link to post
Share on other sites

I took my DD6 to her first CBIT session on Monday. At that time her tics were diminished and she wasn't really willing to participate. She was also a little sick at the time. But the therapist said that she has seen success with her patients in reducing their most bothersome tics. The child has to be a willing participant. Since my DD has only been dealing with tics on and off for ~ 1 year (as far as I can tell) and they are changing every few weeks, she may not be ready for it yet. As you may or may not know there is a book by Duncan McKinlay "Nix your Tix" written by a psychologist who has Tourettes and used similar techniques to reduce his tics. It's worth a try. Let us all know how it goes.

Link to post
Share on other sites
  • 2 months later...

We have had success with CBT/Habit Reversal! My son is 11 and has had tics since he was 5. Last year was by far his worst year for tics so we looked to try some new options. We were referred to a doctor for CBT/Habit reversal. He worked with my son on coming up with competing responses for specific tics. For example, when my son was "jumping" he would have him stand like a soldier and do relaxation breathing. This helped him to stop the jumping (which had become very problematic at school) within a week. My son saw this doctor weekly from August 2012-August 2013. Each week they decided what they wanted to work on.

 

I am still in touch with the doctor but we decided to stop appointments in September because my son was doing so well. We are located the Northern VA area.

Link to post
Share on other sites
  • 1 year later...
  • 10 months later...

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...