Another PANDAS Story in the News

[MomWithOCDSon]

ABC News!

 

PANDAS on ABC

 

 

Correction . . . sudden onset, but not immediate diagnosis or treatment, according to the story.

Edited October 5, 2011 by MomWithOCDSon

[norcalmom]

I hate the term "sudden onset" . They need to define a window - my son developed more and more symptoms over 4-5 weeks or so. And how do you say tics are sudden or not. One day he didn't tic, the next day he did. Sudden enough? Click on the "Boy who caught OCD" video posted on the page you reference - it is an interview with Beth Maloney said that Sammy seemed to add more and more symptoms over several weeks.

 

And if you had witnessed a behavior in the past, say, bed wetting, separation anxiety, even a period of ticcing, does it preclude it from being sudden onset? NO! It was probably a minor pandas exacerbation passing for a "normal" phase that lots of kids go through. ITs a subjective term. And it requires the doctors subjective definition, and the parents version of the definition to align to get a diagnosis. I actually almost didn't pursue PANDAS because of this term - I disqualifed my son because for me it didn't happen in a "sudden, overnight" manner. And he'd had some "phases" that were similar before, not exactly the same, and not as severe by any means, but he had had odd periods of separation anxiety and unreasonable fear as well as moodiness and bedwetting.

 

Swedo has said that typically the first episode isn't caught (usually several weeks after the strep infection) . ITs the ones after that which become more severe and closer to the strep infection (or other illness).

[tpotter]

I hate the term "sudden onset" . They need to define a window - my son developed more and more symptoms over 4-5 weeks or so. And how do you say tics are sudden or not. One day he didn't tic, the next day he did. Sudden enough? Click on the "Boy who caught OCD" video posted on the page you reference - it is an interview with Beth Maloney said that Sammy seemed to add more and more symptoms over several weeks.

 

And if you had witnessed a behavior in the past, say, bed wetting, separation anxiety, even a period of ticcing, does it preclude it from being sudden onset? NO! It was probably a minor pandas exacerbation passing for a "normal" phase that lots of kids go through. ITs a subjective term. And it requires the doctors subjective definition, and the parents version of the definition to align to get a diagnosis. I actually almost didn't pursue PANDAS because of this term - I disqualifed my son because for me it didn't happen in a "sudden, overnight" manner. And he'd had some "phases" that were similar before, not exactly the same, and not as severe by any means, but he had had odd periods of separation anxiety and unreasonable fear as well as moodiness and bedwetting.

 

Swedo has said that typically the first episode isn't caught (usually several weeks after the strep infection) . ITs the ones after that which become more severe and closer to the strep infection (or other illness).

 

 

My younger son was classic onset, and still took 4 years to diagnose (and we caught the "suddeness" of the onset.

 

My older son wasn't caught until he was 15 years old, when he was hospitalized for being suicidal. Because of younger son, and my "luck" in finding Dr. K and an article by him, I was able to put 2 and 2 together, and realized that older son was probably PANDAS (even the suicidal ideations were OCD, because he was feeling like he HAD to jump from the window or jump in front of a car.) There were other, almost equally bad OCD's. But, it was only after that, that we found previous "evidence" that this was definitely going on far longer than we could ever have dreamed...just didn't recognize the symptoms (such as finding an old writing log of his from 1st grade, and there were massive changes throughout the year.) Then we realized when IVIG was done that his social skills jumped approximately 6-7 years overnight (he's also diagnosed with Asperger's,) so we think the Autism is probably (at least in part) PANS. And on and on and on (personally, I think he probably has congenital stuff. So, really, as Norcalmom said, there's not always a suddenness about the whole thing.

 

My guess is that we are only touching the tip of the iceberg on much of psychiatric illness as a whole.

[nicklemama]

My DS was sudden. He woke up one morning irritible, angry and raging. The OCD and other behaviors seemed to pop up over a period of weeks afterward, so we caught it, but, unfortunately, no doctor did. What bothers me is many doctors require active strep surrounding the episode to diagnose, which my DS does not have. His exorcist episode occurred after Flumist. He has, in fact, never tested positive for strep or anything else. I believe this fact kept him from being diagnosed for a year. I actually saw the Mystery Diagnosis episode in fall 2010 and the light bulb went on.

 

Dr K pointed out the original episode occurred 10 months prior to the exorcist episode that caught our attention. He had an ear infection and was irritible and somewhat difficult for several months afterward. We attributed it to a phase or the Flonase he was prescribed.

Edited October 6, 2011 by nicklemama

[norcalmom]

That is an excellent point. Even researchers say that the initial strep episode may easily be missed - and if subsequent episodes are set off by virus or other immune activation - the strep is long gone for many at the time they are being evaluated.

[dcmom]

I consider getting full blown OCD (and or other symptoms) over the span of 4 to 5 weeks- sudden onset.

[hugs2day]

That is what happened to my son until he was in crisis. In hindsight if I had known about PANDAS I would have seen the signs, I thought he was just going through kindgergarten anxiety, bladder uti and childhood fears of ghosts and dogs for about a month and then overnight went into crisis. There were warning signs I just didn't know about them.