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A while ago Bill posted in his charting post that sometimes his son would show "OCD with triggers". I had some questions about this, so I am reposting and bumping up my old post, hoping someone can answer this.

 

Thanks.

 

Bill, thanks for posting.

 

Can you elaborate on what "OCD: functional with triggers" means? My DS9 has always had tons of tics, but now I see a lot more triggers to his motor movements and I am wondering if it is time to start thinking of it as OCD instead (just the compulsions part, I don't think there are any obsessions. And there doesn't seem to be anxiety associated with the compulsions -- he just has to do them, but they are ritualized to specific situations, like picking up a book to read, or closing the car door, or getting an answer correct on his homework, or hearing a certain sound).

 

Can you (or anyone) shed some light on this? It's been tics for so long (years) but this seems different. (and the tics have mostly gone). I'm confused.

 

Thanks.

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A while ago Bill posted in his charting post that sometimes his son would show "OCD with triggers". I had some questions about this, so I am reposting and bumping up my old post, hoping someone can answer this.

 

Thanks.

 

Bill, thanks for posting.

 

Can you elaborate on what "OCD: functional with triggers" means? My DS9 has always had tons of tics, but now I see a lot more triggers to his motor movements and I am wondering if it is time to start thinking of it as OCD instead (just the compulsions part, I don't think there are any obsessions. And there doesn't seem to be anxiety associated with the compulsions -- he just has to do them, but they are ritualized to specific situations, like picking up a book to read, or closing the car door, or getting an answer correct on his homework, or hearing a certain sound).

 

Can you (or anyone) shed some light on this? It's been tics for so long (years) but this seems different. (and the tics have mostly gone). I'm confused.

 

Thanks.

 

 

Hi. For me, I was looking for a way to record his daily "status" quickly, something that I would/could do every day. A number scale will also let me chart using Excel. I've not done that in a while as I do not want to bias myself.

 

Now for your question....I analyzed my son's OCD behavior trying to differentiate between what made a good day vice bad. I realized that no two days are exactly alike and much of that had to do with what he was doing each day. It is difficult to score him when some days he only sits and watches TV all day long (which I now call cocooning) vice going with us to the store. An example of "Functional with triggers" might be where he is essentially fine until someone brushes up against him at the store. This might set off a contamination concern. On a '3' day, this would resolve itself. If not, the '3' day might become a '5' (persistent). I know it's getting worse when he starts tracking what we are doing and whether we are washing our hands - Others contaminated '7'

 

My scale is not perfect as it's very subjective. I suspect my son is no different than many of the children here who also have learned to 'hide' their OCD. It gets really hard to score when he might spend hours playing with a friend only to suffer the aftermath in the evening when we have to wash his bedding because his friend sat down on the bed or turn over the couch cushions because he sat there....yes, happened last week. : )

 

Some thoughts on your other comment..."And there doesn't seem to be anxiety associated with the compulsions -- he just has to do them" There are a lot of rituals my son has to do. He is not anxious at all while doing them....ask yourself this though, what if you would not let him do them? I've tried that many times with my son (on the advice/direction of doctors); anxiety is through the roof pretty quick. The compulsions are his way of relieving or preventing the anxiety.

 

I'm not sure regarding OCD for the tics. My son has generalized dystonia and tics. Both likely caused by these bacterial infections....His anxiety can make either or both worse. How well rested he is plays a part. As the day wears on they can get worse if he is active. Now that he is being treated for Lyme and is on all the antibiotics, I see the dystonia and tics changing. There seems to be more jumpiness to his muscles. I liken it to having a charlie horse whereupon releasing the muscle jumps rapidly as it lets go. That may be 100% incorrect but thinking about it like that gives me hope so I'm sticking with it. Dystonia is sustained muscle contractions cause twisting and repetitive movements or abnormal postures. As such, it is a label and not very helpful (as I bluntly told Dr. Singer at John Hopkins).

 

Helpful?

 

ps - I have not stayed at a Holiday Inn Express any time recently!

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Hi lfran,

Your story struck a cord as it is very similar to my experience. My ds9 was diagnosed a year ago with TS and OCD symptoms. He has had tics since he was 5. I didn't buy the OCD thing because the neurologist only spent about 10 minutes with us even though it took me 2 hours to fill out the forms and because at the time my son's tics involved counting so I thought he jumped to the conclusion that it was a compulsion. I repeatedly asked his psychologist (who was teaching him HRT for the tics) if he saw any signs of anxiety or OCD as he has always seemed to be low anxiety and an easy-going kid. His psychologist agreed that he saw no evidence of either.

About 10 months after his dx, he contracted lyme disease (classic case with bullseye so caught relatively early). His tics went through the roof and started to seem more ritualistic. The tics have always been complex but they seemed more "purposeful" such as evening up the tic, i.e. if he flicked one ear he had to flick the other. He continually denied having any worries or "thoughts" and seemed relatively relaxed. I then started to noticed a few new behaviors such as keeping a closet door open or not wearing certain pjs. When I asked him about this he said "it makes me tic." The OCD lightbulb went off and I new he was experiencing at least the compulsion part but he gave no indication of any obsessive thought. Hi psychologist read a book to him about OCD (not sure of the name) and finally got him to admit he was having "thoughts" that made him tic but would not elaborate. He later told us the thoughts started around the time of the Lyme but he had not had them before. He didn't tell anyone for fear we would think he was crazy. (needless to say this broke our hearts)

We ordered the book "What to do when your brain gets stuck" by Dawn Huebner and it has been nothing short of transformational. He told us he has dozens of triggers that when he sees or hears them, he has to tic. They are very common things like numbers, planets, etc. If he does not tic, he fears he will explode or shrink to nothing (i.e. die). The book gently demonstrates how these thoughts are no more than a brain hiccup and nothing bad will happen if he fights back on OCD. It uses humor and methodical CBT techniques to help the child see for himself that he can gain control over OCD. It is empowering, not imposing.

Interestingly, my ds did not want to discuss this with the psychologist and we have done it all at home. His "thoughts" have been completely gone for about 3 weeks and his tics are down about 90%.

We have also been doing supplements for the last year, follow feingold diet, and have recently taken out gluten and dairy so not sure to what degree these have contributed to the improvement.

Finally, a great article was posted in the TS section on Tourettic OCD. Couldn't find the link but the authors are Charles Mansueto and David Keuler , printed in Behavioral Modifications, 2005. It does a great job of explaining how TS and OCD can morph together in a subset of people and result in unique symptoms. It is my ds to a "T" even before the exacerbation from Lyme.

Hope this helps and good luck!

Lisa

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Thank you both.

 

Lisa, the Tourettic OCD sounds a lot like my DS9 as well. The book sounds very interesting. I will order a copy.

 

Are you also treating for Lyme? If so, has the treatment helped with the tics/OCD at all? We're about to go down that road.

 

Do you have a particular type of physician who is helping with this? We live in Los Angeles and there are a lot of OCD clinics around but I don't know if they are on top of this subtype that our sons seem to have. I guess maybe I'll call around and ask.

 

 

Hi lfran,

Your story struck a cord as it is very similar to my experience. My ds9 was diagnosed a year ago with TS and OCD symptoms. He has had tics since he was 5. I didn't buy the OCD thing because the neurologist only spent about 10 minutes with us even though it took me 2 hours to fill out the forms and because at the time my son's tics involved counting so I thought he jumped to the conclusion that it was a compulsion. I repeatedly asked his psychologist (who was teaching him HRT for the tics) if he saw any signs of anxiety or OCD as he has always seemed to be low anxiety and an easy-going kid. His psychologist agreed that he saw no evidence of either.

About 10 months after his dx, he contracted lyme disease (classic case with bullseye so caught relatively early). His tics went through the roof and started to seem more ritualistic. The tics have always been complex but they seemed more "purposeful" such as evening up the tic, i.e. if he flicked one ear he had to flick the other. He continually denied having any worries or "thoughts" and seemed relatively relaxed. I then started to noticed a few new behaviors such as keeping a closet door open or not wearing certain pjs. When I asked him about this he said "it makes me tic." The OCD lightbulb went off and I new he was experiencing at least the compulsion part but he gave no indication of any obsessive thought. Hi psychologist read a book to him about OCD (not sure of the name) and finally got him to admit he was having "thoughts" that made him tic but would not elaborate. He later told us the thoughts started around the time of the Lyme but he had not had them before. He didn't tell anyone for fear we would think he was crazy. (needless to say this broke our hearts)

We ordered the book "What to do when your brain gets stuck" by Dawn Huebner and it has been nothing short of transformational. He told us he has dozens of triggers that when he sees or hears them, he has to tic. They are very common things like numbers, planets, etc. If he does not tic, he fears he will explode or shrink to nothing (i.e. die). The book gently demonstrates how these thoughts are no more than a brain hiccup and nothing bad will happen if he fights back on OCD. It uses humor and methodical CBT techniques to help the child see for himself that he can gain control over OCD. It is empowering, not imposing.

Interestingly, my ds did not want to discuss this with the psychologist and we have done it all at home. His "thoughts" have been completely gone for about 3 weeks and his tics are down about 90%.

We have also been doing supplements for the last year, follow feingold diet, and have recently taken out gluten and dairy so not sure to what degree these have contributed to the improvement.

Finally, a great article was posted in the TS section on Tourettic OCD. Couldn't find the link but the authors are Charles Mansueto and David Keuler , printed in Behavioral Modifications, 2005. It does a great job of explaining how TS and OCD can morph together in a subset of people and result in unique symptoms. It is my ds to a "T" even before the exacerbation from Lyme.

Hope this helps and good luck!

Lisa

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I just wanted to mention that my son was also flicking his ears (plus a bunch of other stuff) at sudden on-set with very mild OCD. He has congenital Lyme/bartonella/babesia and all OCD and TICS have been in remission with treatment. Recently we added an new antibiotic with some additional herbs and cough reemerged that is beginning to wane.... Our LLMD feels this particular cough is associated with Bartonella.

 

4Jack: I am sure your LLMD feels the same... but he believes the TIC and OCD are only a symptom that the infection is still present and its very treatable given time.

 

Ifran: There are several trying to locate a good LLMD in your area to treat. Two people have recently located an LLMD in the area but it is unclear yet if he will be helpful over the next several years to bring these children to full wellness. However, we have two of the Top, Top LLMDs in the Bay Area and both are treating PANDAS/Lyme children. Please PM me if you are willing to travel north. One will want to see you every 12 weeks. One will 'on the front end' want to see you every 6 weeks. With time the appointments get pushed further out and will eventually do phone appointment in between visits. I can also provide contact of parent and Dr.'s name for your area.

 

-Wendy

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Hi lfran,

My ds was treated for Lyme but it did not help directly with the tics/OCD. I was told it could take months the Lyme was gone to resolve. What has helped the most is getting his OCD under control. We now realize how much it drove his tics. Tics are still there but dramatically reduced.

 

He sees a Cognitive behavioral psychologist for CBT therapy for the OCD and Habit reversal Training for the TS. (HRT is a method of CBT). The HRT has helped for the tics but the book I mentioned has helped the most for the OCD. It is based on CBT techniques. We are on the east coast, but I would definitely make sure you find a psychologist that specifically wprks with kids with OCD and TS. Some on this site are wary of HRT because they feel it is not good to have someone try to supress tics, but our experience has been that it is more about redirecting them than supressing.

 

SF Mom,

My ds9 Lyme is may be different than most on this site as he has had TS since he was 5 and it is hereditary. He got Lyme just recently and we caught it early. He tested negative for confections so we are hoping that it is resolved. There are no indications that the tics and OCD symptoms are Lyme induced.

 

Hope that helps!

Lisa

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