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Why are PANDAS kids a minority?


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I think this is just because we are only seeing the tip of the iceberg. I can recall a time when we were told that Alzheimers represented a small percentage of dementia cases, in which the onset was very early in life. I can also recall a time when few children were diagnosed with chronic ear infections (my brother had them, and I remember that people thought it was odd that he kept getting them!).

 

Today, we see large numbers of people with these diagnoses. While some of this may truly be due to some environmental factor(s) that we don't understand ... I also think that there are more people with these diagnoses simply because we have come to understand all that encompasses the disorder and we are looking for it. If physicians do not know to look for it..they will not find it!

 

If you have a chance, watch some of Dr. Schulman's videos at http://drmdk.com/html/pandas.html I know I keep talking about this PANDAS page, but her videos were such an eye opener for me. I think they were an eye opener because she is a regular pediatrician (not a PANDAS specialist) who GETS it and has diagnosed and treated over 200 cases. When kid comes in with mild PANDAS symptoms she identifies it and treats it until AFTER it goes away and then makes a noted for the next time the kid is exposed. She understands that kids who are not treated go on to get worse and that the worse cases will need IVIG. Someday, all docs will do this and when they do - they will all have hundreds of cases to report!

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I am just wondering why PANDAS kids are assumed to be only a very small number of those who have OCD & Tourette's? As I am looking over all the stuff on it, it seems reasonable to me that it could be the most common cause.

 

I think Kimballout hit it on the nose.

 

The more I live, read and research through this PANDAS journey, the more convinced I become that inflammation is a contributing factor in nearly ALL ills and that lots of kids and adults who suffer from OCD and Tourette's have inflammation, infectious triggers and/or immune modulation problems as a part of the disorder picture. We probably have to be genetically predisposed, and maybe stage of life (hormones) play a role, too, but it seems like a huge cop-out to me now to observe a set of behaviors (OCD or Tourette's), slap a label on it and tell the person to pop this or that psychiatric med, accept the label, get some therapy, and get on with your life. <_<

 

I now know from experience that addressing inflammation and immune modulation assists a kid who's had an OCD diagnosis for over 7 years and for whom we only very recently found an infectious agent connection (strep) as he is entirely asymptomatic in the classic sense.

 

Now it is my mission, and my honor, to present information and opportunity when I hear about another kid with one of those diagnoses for whom no further investigation has been considered or undertaken. I don't have much faith in the mass medical community, but I do believe that most parents of kids like these, once given some information and support, will follow our leads, stop taking "no" for an answer, and seek additional answers and help for their kids.

 

We've just gotta keep spreading the word and supporting one another! :)

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I've read comments from Dr. Swedo where she asserted that her NIMH team believes a quarter to a third of kids diagnosed with OCD or Tourette's actually fall into the "PANDAS subgroup." That would be hundreds of thousands of children, I believe.

 

i dont know how long ago that thought was made..but with light of myco p and lymes.. i bet the number is higher..and as more illnesses are linked...who knows....i know people with celiacs can express with autism or pan/pits(tics/ocd)

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I am just wondering why PANDAS kids are assumed to be only a very small number of those who have OCD & Tourette's? As I am looking over all the stuff on it, it seems reasonable to me that it could be the most common cause.

 

The topic of this question is something that has bothered me over the years. I think, after reading the boards here that I am probably in the minority when I say that I do think that pandas is rare. Even among those with OCD & Tourette's. But then I have never known anyone with either OCD or Tourette's who didn't have an infectious trigger. I know that doesn't make sense.

 

I look forward to the discussion on this topic as I think it will help me come to terms with how I feel about this personally. I think where my feelings stem from is that it is just so impossible in my mind that my dd's illness went undiagnosed for so long and nobody knew what it was or had EVER seen someone like that...how could they not, if it WASN'T rare? I'm guessing that the cumulative years of experience that all her doctors, nurses, specialists and teachers had was in the 1000's (of YEARS!!!) and nobody had seen this before? So hard to fathom. My dds case was very severe, though. And it did not respond to medications and therapies the way the the experts claimed normal OCD responds. Very interesting, I'm torn. Maybe this is the way my brain is letting me off the hook for not figuring it out sooner in my own dd? Maybe it is just my own personal lived experience with my dd. I don't know but I am always surprised when someone posts on here about it being more common than previously though.

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Swedo quoted that number last year. I believe in the Scientific American Mind article. However, that number is based on what diagnosing critera and may only be quoted for PANDAS and not all the additional PITAND cases out there....which is a lot.

 

 

I've read comments from Dr. Swedo where she asserted that her NIMH team believes a quarter to a third of kids diagnosed with OCD or Tourette's actually fall into the "PANDAS subgroup." That would be hundreds of thousands of children, I believe.

 

i dont know how long ago that thought was made..but with light of myco p and lymes.. i bet the number is higher..and as more illnesses are linked...who knows....i know people with celiacs can express with autism or pan/pits(tics/ocd)

Edited by Vickie
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I am just wondering why PANDAS kids are assumed to be only a very small number of those who have OCD & Tourette's? As I am looking over all the stuff on it, it seems reasonable to me that it could be the most common cause.

 

The topic of this question is something that has bothered me over the years. I think, after reading the boards here that I am probably in the minority when I say that I do think that pandas is rare. Even among those with OCD & Tourette's. But then I have never known anyone with either OCD or Tourette's who didn't have an infectious trigger. I know that doesn't make sense.

 

I look forward to the discussion on this topic as I think it will help me come to terms with how I feel about this personally. I think where my feelings stem from is that it is just so impossible in my mind that my dd's illness went undiagnosed for so long and nobody knew what it was or had EVER seen someone like that...how could they not, if it WASN'T rare? I'm guessing that the cumulative years of experience that all her doctors, nurses, specialists and teachers had was in the 1000's (of YEARS!!!) and nobody had seen this before? So hard to fathom. My dds case was very severe, though. And it did not respond to medications and therapies the way the the experts claimed normal OCD responds. Very interesting, I'm torn. Maybe this is the way my brain is letting me off the hook for not figuring it out sooner in my own dd? Maybe it is just my own personal lived experience with my dd. I don't know but I am always surprised when someone posts on here about it being more common than previously though.

 

well the reallity is ts and ocd is considered rare....so if you have a doc who only sees 1 patient...and another doc has maybe 2..its hard to put the links together....now if the docs listened to me 7 years ago when i put strep and tics together...maybe asked a few other docs...maybe we'd be 5-7 years farther along...(but i'm a real people watcher and picked up quickly on the link)(transient tic= mild infection, body recovers...just a thought)

and i know before i had kids...and would go to NY..and see the homeless...i always feel like they were ill..not mentally, more infected,,encepholitis..i still hold to that too!!

it's all good(not really, kinda su$$s) but we are getting there

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The main problem is the doctors did not diagnosis the problem and therefore still think they have never seen a pandas case. I know I have never gone back to all my son's doctors to enlighten them.

 

When your car's electrical system messes up, you take it to the shop and they fix it. You get a warranty and if the problem isn't fixed you bring it back again and again and again until the problem is fixed. The shop knows if they made a mistake and learn from this process. Doctors have no review system. I'm out every dollar I spent and so is my insurance.

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I hear you, Amy. Personally, I think the extreme ("exorcist syndrome") versions of PANDAS are indeed rare (thank goodness): this is what my son had, and it completely freaks the average M.D. out. As you say, they're not used to seeing this, and the severe psychiatric symptoms throw them way out of their comfort zones; they just want your child out of their office ASAP!

 

I wonder about the milder cases, though, which I suspect are far more common. For example, I've read that more than a 3rd of school-age children will develop tics at some point during their childhood, but these are usually transient and resolve on their own. Nobody knows why. Is this a post-strep reaction? And are some milder cases of OCD, tics, etc., related to post-strep autoimmune reactions that just aren't as out of control as the "exorcist" kids? If it's milder, these children might get along okay with traditional treatments (SSRI's, anti-tic meds, CBT/ERP therapy, etc.) and never identified as PANDAS.

 

It's a mystery....

 

 

I am just wondering why PANDAS kids are assumed to be only a very small number of those who have OCD & Tourette's? As I am looking over all the stuff on it, it seems reasonable to me that it could be the most common cause.

 

The topic of this question is something that has bothered me over the years. I think, after reading the boards here that I am probably in the minority when I say that I do think that pandas is rare. Even among those with OCD & Tourette's. But then I have never known anyone with either OCD or Tourette's who didn't have an infectious trigger. I know that doesn't make sense.

 

I look forward to the discussion on this topic as I think it will help me come to terms with how I feel about this personally. I think where my feelings stem from is that it is just so impossible in my mind that my dd's illness went undiagnosed for so long and nobody knew what it was or had EVER seen someone like that...how could they not, if it WASN'T rare? I'm guessing that the cumulative years of experience that all her doctors, nurses, specialists and teachers had was in the 1000's (of YEARS!!!) and nobody had seen this before? So hard to fathom. My dds case was very severe, though. And it did not respond to medications and therapies the way the the experts claimed normal OCD responds. Very interesting, I'm torn. Maybe this is the way my brain is letting me off the hook for not figuring it out sooner in my own dd? Maybe it is just my own personal lived experience with my dd. I don't know but I am always surprised when someone posts on here about it being more common than previously though.

Edited by Worried Dad
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I wonder about the milder cases, though, which I suspect are far more common. For example, I've read that more than a 3rd of school-age children will develop tics at some point during their childhood, but these are usually transient and resolve on their own. Nobody knows why. Is this a post-strep reaction? And are some milder cases of OCD, tics, etc., related to post-strep autoimmune reactions that just aren't as out of control as the "exorcist" kids? If it's milder, these children might get along okay with traditional treatments (SSRI's, anti-tic meds, CBT/ERP therapy, etc.) and never identified as PANDAS.

 

It's a mystery....

 

 

Hey Dad, I'm pretty sure that's exactly what happened to us. A note comes home from grade school that says a case of strep has been identified in the class. DS never shows any sign of strep, but 7-10 days later, DH or I come down with a case. Once DS is given OCD diagnosis and I come across PANDAS in research, I inquire about it but am blown off because 1) DS's presentation at the time is mild, 2)he doesn't have strep, and 3) few folks at that time agreed with Swedo's position. So for nearly 5 years, DS is not just manageable but almost "normal" while taking an SSRI and getting some therapy. It's not until, at 12, he gets one too many hits of strep, plus whatever else is at play at that point (hormones?), that he explodes in that gigantic way . . . a way in which no SSRI or therapy can address. And even then, he doesn't show any sign of strep in the classic sense, but we finally have enough information to move forward with the blood tests and his titers speak for themselves, in our case.

 

I'm willing to bet there are TENS OF THOUSANDS of kids out there suffering from various immune/inflammation/infectious triggered conditions and folks have no idea. It's not until all the conventional treatments fail some of us that we know to move on in our search, you know?

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