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Well it kind of depends- after I was originally treated I was completely symptom free, no anxiety- no symptoms. I was 100% except during allergy season and times of stress. (Straight A student etc)

More or less, I was symptom free for 11 years until I got a mycoplasma infection in college and also repeat sinus infections. During the actual infections, I probably went back down to 50% functional-(couldn't leave my dorm for a week straight) but abx (levaquin) got me back to around 95%. It was odd because I never responded that well to abx before. At the moment I'm between 90 & 98% because of not taking care of myself in college. No one looking at me would know I have PANDAS, but I'm seeking treatment again to get back to where I was originally.

 

As a child my symptoms presented themselves as uncontrollable tics and OCD, now as an adult my symptoms first present as anxiety and if they get really bad THEN that's when the tics and OCD come in. Anxiety is like a BEEP BEEP BEEP WARNING you're about to lose control of your brain and I know to take advil and/or go to the doctor. Boy, this disease sucks.

 

Pandas16, I SO appreciate all your input! It helps me see what may lie ahead for my DS14, and it seems as though anxiety as a bellweather is a thru-line, at least where the two of you are concerned. I can only hope and pray he learns to handle himself one day as well as you appear to today.

 

Re. your gum story . . . do you know who Dr. Jonathan Grayson is? An ERP expert who has kind of an in-your-face, guerilla style of exposure therapy. DS and I attended a session of his on contamination at last year's IOCDF conference, and I think it was way too much for DS. Grayson brought in "chewed gum" . . . by whom, we don't know (I'm thinking it was probably finger-mashed under a running tap, given liability issues, etc.) in a shoebox and proceeded to pass it around the room. First he asked the non-OCD sufferers (family, supporters, etc.) to take a piece and put it in their mouths, and then he asked the sufferers to do it. My DS, at the time, was the youngest in the group, with the majority being adults and a few older teenagers at the time. He did it, but afterwards had a major breakdown and was basically incapacitated with regret that he'd allowed himself to be "peer pressured" into popping the gum in his mouth. Dr. Grayson spent some one-on-one time with him afterward, trying to help him walk away from the experience with a positive gain instead of a negative trauma. Tall order.

 

DS used to chew a lot of gum . . . said the repeated, small motor action activity helped him sort his thoughts better and stay focused, kind of like someone else tapping a pencil or drumming their fingers. But he hasn't chewed gum again since that day last July!

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Guest pandas16

Well it kind of depends- after I was originally treated I was completely symptom free, no anxiety- no symptoms. I was 100% except during allergy season and times of stress. (Straight A student etc)

More or less, I was symptom free for 11 years until I got a mycoplasma infection in college and also repeat sinus infections. During the actual infections, I probably went back down to 50% functional-(couldn't leave my dorm for a week straight) but abx (levaquin) got me back to around 95%. It was odd because I never responded that well to abx before. At the moment I'm between 90 & 98% because of not taking care of myself in college. No one looking at me would know I have PANDAS, but I'm seeking treatment again to get back to where I was originally.

 

As a child my symptoms presented themselves as uncontrollable tics and OCD, now as an adult my symptoms first present as anxiety and if they get really bad THEN that's when the tics and OCD come in. Anxiety is like a BEEP BEEP BEEP WARNING you're about to lose control of your brain and I know to take advil and/or go to the doctor. Boy, this disease sucks.

 

Pandas16, I SO appreciate all your input! It helps me see what may lie ahead for my DS14, and it seems as though anxiety as a bellweather is a thru-line, at least where the two of you are concerned. I can only hope and pray he learns to handle himself one day as well as you appear to today.

 

Re. your gum story . . . do you know who Dr. Jonathan Grayson is? An ERP expert who has kind of an in-your-face, guerilla style of exposure therapy. DS and I attended a session of his on contamination at last year's IOCDF conference, and I think it was way too much for DS. Grayson brought in "chewed gum" . . . by whom, we don't know (I'm thinking it was probably finger-mashed under a running tap, given liability issues, etc.) in a shoebox and proceeded to pass it around the room. First he asked the non-OCD sufferers (family, supporters, etc.) to take a piece and put it in their mouths, and then he asked the sufferers to do it. My DS, at the time, was the youngest in the group, with the majority being adults and a few older teenagers at the time. He did it, but afterwards had a major breakdown and was basically incapacitated with regret that he'd allowed himself to be "peer pressured" into popping the gum in his mouth. Dr. Grayson spent some one-on-one time with him afterward, trying to help him walk away from the experience with a positive gain instead of a negative trauma. Tall order.

 

DS used to chew a lot of gum . . . said the repeated, small motor action activity helped him sort his thoughts better and stay focused, kind of like someone else tapping a pencil or drumming their fingers. But he hasn't chewed gum again since that day last July!

 

 

 

Ah I should mention though that getting over my contamination was VERY gradual. It was not in one night at all. It took about 6 or 7 months from spitting the gum out to actually touching it + I was having suppressive therapies at the time so in addition I was in the process of getting well. I think if that had happened to me in one night it probably would have been one of the worst nights of my life. I personally needed gradual.

Edited by pandas16
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Hi - 2 things really

 

there's no way I reckon I could chew gum that other folks had chewed, don't consider myself OCD tho' just seems too gross, it would put me off gum too

 

kids that are allowed to chew gum during tests tend to do better... can't remember why the article said this was but they also linked loss of your own teeth to increased dementia 'cos you chew less, even with dentures..... something to do with activating that part of the brain above the chew site....

Edited by dut
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