Is PANDAS a subset of Tourettes or of OCD?

[Buster]

I re-read Swedo's paper "Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood" and noted that in the study of 29 children, only 2 had tic disorders without OCD http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf

 

I then re-read Kurlan's June 2008 Pediatrics paper and discovered that >75% of his kids had been diagnosed with Tourettes, 10% with some chronic tic disorder, 10% with tics not otherwise specified (i.e., 95% of Kurlan's kids had primarily tics).

 

Essentially Swedo was studying OCD and Kurlan is studying Tourettes.

 

Looking at the definitions of OCD and Tourettes Syndrome, TS has a restriction that there is no remission lasting longer than 2 months within a year.

 

This got me wondering whether the reason that the John Hopkins researchers seem to be consistently unable to reproduce Swedo, Kirvan, Dale and Church's results is because they are checking whether PANDAS is a subset of Tourettes rather than whether PANDAS is a subset of OCD.

 

I found out that Singer has just published yet another paper that states that it is comparing non-PANDAS OCD, OCD + chronic tics and OCD + PANDAS . However, looking at his statistics, there are no OCD-only children in the OCD+PANDAS group. In addition, it appears that the OCD+PANDAS group was pulled from kids diagnosed with Tourettes. Thus the group should have been labelled OCD+TS+proportedPANDAS.

 

What I'm getting at is that Kurlan is studying whether PANDAS is a subset of Tourettes rather than whether PANDAS is a subset of OCD. He's using the Tourettes as primary and OCD as secondary rather than having studies of OCD as primary and tics as secondary.

 

So for folks on this forum, were your kids diagnosed with Tourettes or with OCD?

 

Best regards,

 

Buster

[Megs_Mom]

Severe overnight presentation of ocd only. That's one of the reasons why we were initially told it could not be PANDASM.

I re-read Swedo's paper "Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood" and noted that in the study of 29 children, only 2 had tic disorders without OCD http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf

 

I then re-read Kurlan's June 2008 Pediatrics paper and discovered that >75% of his kids had been diagnosed with Tourettes, 10% with some chronic tic disorder, 10% with tics not otherwise specified (i.e., 95% of Kurlan's kids had primarily tics).

 

Essentially Swedo was studying OCD and Kurlan is studying Tourettes.

 

Looking at the definitions of OCD and Tourettes Syndrome, TS has a restriction that there is no remission lasting longer than 2 months within a year.

 

This got me wondering whether the reason that the John Hopkins researchers seem to be consistently unable to reproduce Swedo, Kirvan, Dale and Church's results is because they are checking whether PANDAS is a subset of Tourettes rather than whether PANDAS is a subset of OCD.

 

I found out that Singer has just published yet another paper that states that it is comparing non-PANDAS OCD, OCD + chronic tics and OCD + PANDAS . However, looking at his statistics, there are no OCD-only children in the OCD+PANDAS group. In addition, it appears that the OCD+PANDAS group was pulled from kids diagnosed with Tourettes. Thus the group should have been labelled OCD+TS+proportedPANDAS.

 

What I'm getting at is that Kurlan is studying whether PANDAS is a subset of Tourettes rather than whether PANDAS is a subset of OCD. He's using the Tourettes as primary and OCD as secondary rather than having studies of OCD as primary and tics as secondary.

 

So for folks on this forum, were your kids diagnosed with Tourettes or with OCD?

 

Best regards,

 

Buster

[thereishope]

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Edited October 18, 2016 by vickie

[Suzan]

So for folks on this forum, were your kids diagnosed with Tourettes or with OCD?

 

No Tourettes or tics here at this point. OCD, ADHD, Sensory Integration Disorder mainly.....

[T_Mom]

Our d:

Episode 1: OCD (sudden onset compulsive exercising/anorexia for 2 months)

Episode 2: OCD (severe regressive OCD, an exacerbation which left her incapacitated, 6 weeks approx.) Very mild tics were present--looked like finger flicking at times. Relieved with antibiotics/steroid burst.

 

Episodes 3, 4: Both moderate episodes triggered by illness when sick (no strep, she was not on antibiotics at the time.) OCD (mild to moderate) and mild tics (face stretching, eye opening) Both times relieved with antibiotics.

 

Episode 5: Severe OCD came on with a bad cold (102 temp), with tics. Relieved by ongoing antibiotics, though healing took 4 months and a steroid burst to get back to 100%.

 

OCD is DEFINITELY primary with tics secondary.

[ShaesMom]

OCD-No tics for my dd.

[Megs_Mom]

Hi Buster - I am sure that you have read this study http://ajp.psychiatryonline.org/cgi/reprint/159/8/1430.pdf, but did not see it on the recap thread (I'm still new here so may have missed it). I am wondering your thoughts on this, and if there is any treatment plan suggested based on this research. Thanks!

[acdrobert]

[Wow I gues we are one of the few kids with tics but no OCD

 

 

 

 

quote name=Buster' date='Sep 2 2009, 12:58 AM' post='37052]

I re-read Swedo's paper "Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood" and noted that in the study of 29 children, only 2 had tic disorders without OCD http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf

 

I then re-read Kurlan's June 2008 Pediatrics paper and discovered that >75% of his kids had been diagnosed with Tourettes, 10% with some chronic tic disorder, 10% with tics not otherwise specified (i.e., 95% of Kurlan's kids had primarily tics).

 

Essentially Swedo was studying OCD and Kurlan is studying Tourettes.

 

Looking at the definitions of OCD and Tourettes Syndrome, TS has a restriction that there is no remission lasting longer than 2 months within a year.

 

This got me wondering whether the reason that the John Hopkins researchers seem to be consistently unable to reproduce Swedo, Kirvan, Dale and Church's results is because they are checking whether PANDAS is a subset of Tourettes rather than whether PANDAS is a subset of OCD.

 

I found out that Singer has just published yet another paper that states that it is comparing non-PANDAS OCD, OCD + chronic tics and OCD + PANDAS . However, looking at his statistics, there are no OCD-only children in the OCD+PANDAS group. In addition, it appears that the OCD+PANDAS group was pulled from kids diagnosed with Tourettes. Thus the group should have been labelled OCD+TS+proportedPANDAS.

 

What I'm getting at is that Kurlan is studying whether PANDAS is a subset of Tourettes rather than whether PANDAS is a subset of OCD. He's using the Tourettes as primary and OCD as secondary rather than having studies of OCD as primary and tics as secondary.

 

So for folks on this forum, were your kids diagnosed with Tourettes or with OCD?

 

Best regards,

 

Buster

[Debbie1]

Child 1: Tics only (although she twirls her hair a lot - is that OCD?)

 

Child 2: OCD and tics

[colleenrn]

My daughter's PANDAS began with only OCD and anxiety. The tics came later. They came in full force also.

 

My two sons did not have the typical presentation that my daughter had. There's was emotional lability, low frustration tolerance, anger, hyperactivity. I have noticed on a few occasions when they definitely had strep, some minor tics.

 

My daughter had lots of tics, lots of OCD, lots of intrusive thoughts, yet her strep went untreated for much longer b/c I didi not know what I was dealing with.

 

I have been very aggrssive with my son's treatments (antibiotics) b/c I knew what I was dealing with. Does that make sense??

 

Colleen

[Buster]

Hi Meg,

 

Good catch on Sokol's work. Since our child had AN, I was very interested in Sokol's work, but the work was not picked up after Dr. Sokol's effort. This coupled with the demise of the D8/17 marker makes it hard to know what to do with the papers. I hope that another researcher will pick up the thread and resurrect the research.

 

Regards,

 

Buster

 

Hi Buster - I am sure that you have read this study http://ajp.psychiatryonline.org/cgi/reprint/159/8/1430.pdf, but did not see it on the recap thread (I'm still new here so may have missed it). I am wondering your thoughts on this, and if there is any treatment plan suggested based on this research. Thanks!

[Kayanne]

My dd6 first presented with obsessive thoughts that were holding her back, ADD that kind of evolved into Autistic behavior, she coughed a lot into the crook of her arm after a while....not sure if it was a germ thing or a tic...the coughing devolved and disappeared after a few weeks on the prednisone.

[sf_mom]

The cough is considered a TIC and usually the first presentation. If you look at Dr. K's information on-line about PANDAS the cough is common in PANDAS children. My son was doing the same, cleared up after steroid burst but he is now clearing air through his nose without the cough into the crook of his arm.... 'so a new tic'. Once in a while, he clicks his teeth together or rising his eye brows. The average person wouldn't pick up on it but its definitely there and more present when he is tired, right before bedtime.

[Suzan]

The cough is considered a TIC and usually the first presentation. If you look at Dr. K's information on-line about PANDAS the cough is common in PANDAS children. My son was doing the same, cleared up after steroid burst but he is now clearing air through his nose without the cough into the crook of his arm.... 'so a new tic'. Once in a while, he clicks his teeth together or rising his eye brows. The average person wouldn't pick up on it but its definitely there and more present when he is tired, right before bedtime.

 

I think maybe I don't fully understand tics. My dd8 has some strange behaviors, but I have always felt like they are things she can control. They seem intentional and are not consistant (meaning doesn't happen all the time). How do you determine if it's tic related?

[Kayanne]

he is now clearing air through his nose without the cough into the crook of his arm

 

That is exactly what happened to my dd...that is what I meant by "devolved" because it seemed to get less and less pronounced and then just dissappeared.