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OCD and Tourettes?


cory2605
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Hi everyone. I'm reading the post on this forum tonight as I generally read and post to the Pandas forum. I'm still not sure which my son has. I did want to ask a question, tho. How many TS kids/adults also have OCD? My son has a scary intrusive thought which makes him afraid to go into a room by himself. If others are around, he says he doesn't think about it. He does ocassionally feel the need to 'touch' something and also needs to smell things on occasion. We will soon be taking part in a trial for antibiotic tx for sudden onset of tics/OCD but I can't help but want to know what we're dealing with here. His titers were high enough that the Doctor felt it could be remedied with antibiotics.

 

Thanks,

 

Trish

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Statistically, I can't tell you. But I CAN tell you that my almost 9yo son has OCD and attention problems with his TS. I have read that it is quite common to have other things comorbid with TS. My son also feels the need to touch things (and count in his head) and has the fear problem. It got really bad a one point where he felt like something was actually getting him. He would be left alone for a few seconds and literally fall in the floor screaming for help! He would be COMPLETELY terrified. It was a scary and frustrating time for all of us! Thank goodness it has gotten better. He is just now getting to the point (with MUCH work) that he can take a shower in the room by himself, but only because he can see me in the next room from the mirror. :-)

 

My son's titer's just came back negative yesterday, so unfortunately, it won't be as easy as antibiotics for him. I wish you guys luck and much success with your son's treatment!

 

-Melissa

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Hi Trish, just like Melissa's son our ds9 with Chronic Vocal Tic Disorder also shows some OCD behaviour and it is shockingly similar! If he showers he needs EVERY light on upstairs unless one of us is there and TV or music in the background. He has always been very tactile, needing to rub exposed skin. This has diminished some but still there. I think age has helped just learning the appropriateness of touch and when and where is appropriate. He also, when waxing, needs to mentally count, for example light posts while driving. (My husband tells me he also had much of this as a child. He too, had TS or chronic tics. He had to corner touch, count etc.) DS has persistent fear of death and living forever in heaven, extreme anxiety over needles etc. These have lessened over the years as we have gained headway with food sensitivities etc and age seems to allow him to control them some but they are definately there.

 

Megan

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Hi

although many people with TS only have tics as their symptoms, from my experience, the vast majority have OCD as well.

 

Please dont think that your son must have either TS/OCD *OR* PANDAS....it is very possible for someone who has tourette/OCD to ALSO have PANDAS

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Hi

 

many studies talk about 30% to 70% of TS people having OCD at the same time... some even say up to 90%

 

most TS families have people having OCD... but most OCD families do not have TS... the current understanding is that TS and some OCD are from the same disorder phenotype... meaning that if you have the TS gene(s) you can develop TS, chronic tic, OCD or whatever combinations...

 

Usul

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Okay, so I'm not helping much here, since I'm just asking a similar question. However, I'm confused at what point all of these comorbidies take hold. I'm most familiar with ADHD and that if it's going to be an issue; typically it rears its head pretty early on in life and usually before the tics. At the very least, the inattentive or hyperactivity has been observed by the parent on some level. However, I'm much more confused with the OCD, Learning Disabilities, Rage, etc, etc. Are there usually some signs during early childhood? Do they surface at the same time as the tics or are they as mysterious as everything else and can show up years after the Tourette's begins? Thoughts? Personal Stories? Experience?

 

 

Thanks - :)

Edited by Lynn777
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Melissa, my son's titers were actually within range of being normal, which happens often with Pandas kids. I went to a top Pandas Dr. in St. Pete and they did a 4 to 5 hour evaluation of him. This was for a Pandas study and they felt he qualified for the study. Just because your son's titers were fine, which is common, means nothing. Does you son's symptoms seem to get worse when he is sick? His ticcing, fears, etc. I definately would not rule out Pandas if I were you.

 

Statistically, I can't tell you. But I CAN tell you that my almost 9yo son has OCD and attention problems with his TS. I have read that it is quite common to have other things comorbid with TS. My son also feels the need to touch things (and count in his head) and has the fear problem. It got really bad a one point where he felt like something was actually getting him. He would be left alone for a few seconds and literally fall in the floor screaming for help! He would be COMPLETELY terrified. It was a scary and frustrating time for all of us! Thank goodness it has gotten better. He is just now getting to the point (with MUCH work) that he can take a shower in the room by himself, but only because he can see me in the next room from the mirror. :-)

 

My son's titer's just came back negative yesterday, so unfortunately, it won't be as easy as antibiotics for him. I wish you guys luck and much success with your son's treatment!

 

-Melissa

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Hi Megan,

 

We are doing a Gluten, Dairy and Soy Free Diet and I think it has helped with the tics and either exposure is helping with the fear or the diet is. How did you find out about your son's food sensitivities?

 

God Bless,

 

Trish

 

 

 

Hi Trish, just like Melissa's son our ds9 with Chronic Vocal Tic Disorder also shows some OCD behaviour and it is shockingly similar! If he showers he needs EVERY light on upstairs unless one of us is there and TV or music in the background. He has always been very tactile, needing to rub exposed skin. This has diminished some but still there. I think age has helped just learning the appropriateness of touch and when and where is appropriate. He also, when waxing, needs to mentally count, for example light posts while driving. (My husband tells me he also had much of this as a child. He too, had TS or chronic tics. He had to corner touch, count etc.) DS has persistent fear of death and living forever in heaven, extreme anxiety over needles etc. These have lessened over the years as we have gained headway with food sensitivities etc and age seems to allow him to control them some but they are definately there.

 

Megan

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Hi Megan,

 

We are doing a Gluten, Dairy and Soy Free Diet and I think it has helped with the tics and either exposure is helping with the fear or the diet is. How did you find out about your son's food sensitivities?

 

God Bless,

 

Trish

 

 

 

Hi Trish, just like Melissa's son our ds9 with Chronic Vocal Tic Disorder also shows some OCD behaviour and it is shockingly similar! If he showers he needs EVERY light on upstairs unless one of us is there and TV or music in the background. He has always been very tactile, needing to rub exposed skin. This has diminished some but still there. I think age has helped just learning the appropriateness of touch and when and where is appropriate. He also, when waxing, needs to mentally count, for example light posts while driving. (My husband tells me he also had much of this as a child. He too, had TS or chronic tics. He had to corner touch, count etc.) DS has persistent fear of death and living forever in heaven, extreme anxiety over needles etc. These have lessened over the years as we have gained headway with food sensitivities etc and age seems to allow him to control them some but they are definately there.

 

Megan

 

Hi Trish, we did elimination diet and still now if we suspect a trigger food we do a challenge with that food, it is an ongoing process. Right now we suspect pesticides, so are 100% organic when possible, and will challenge some fruits that we suspect when he seems to be baseline. He will not have any tests that require needles so this is slower but keeps his anxiety down. For now I need him to feel like he has some control over the method and he has been really on board if it means no needles!

 

All the best,

 

Megan

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  • 2 weeks later...

Melissa,

 

My son's titers were within normal range also. They don't go by that so much anymore as they do the symptoms and onset. Please check into Pandas! There are studies going on that you receive free treatment with which is what we are doing (although I think we must have gotten the Placebo but they will prescribe the real antibiotic if we quit the study/trial ans ask for it. I'm just hoping to learn as much as I can from these doctors and get as many test run, etc. without running all over the state to different doctors. They are very caring and experts. I know somethings is going to help, I just don't know what.

 

Trish

 

Statistically, I can't tell you. But I CAN tell you that my almost 9yo son has OCD and attention problems with his TS. I have read that it is quite common to have other things comorbid with TS. My son also feels the need to touch things (and count in his head) and has the fear problem. It got really bad a one point where he felt like something was actually getting him. He would be left alone for a few seconds and literally fall in the floor screaming for help! He would be COMPLETELY terrified. It was a scary and frustrating time for all of us! Thank goodness it has gotten better. He is just now getting to the point (with MUCH work) that he can take a shower in the room by himself, but only because he can see me in the next room from the mirror. :-)

 

My son's titer's just came back negative yesterday, so unfortunately, it won't be as easy as antibiotics for him. I wish you guys luck and much success with your son's treatment!

 

-Melissa

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