PANDAS future

[becjonz]

Okay so PANDAS is pediatric as the name says but my question (and DS' too) is what happens in the future? Eventually will he simply out grow it? Do some symptoms persist?

 

I could stumble through more questions but I'm not even sure what to ask. I've seen references to kids in their late teens with exacerbations still so what can we expect.

 

DS10 would like me to promise him that on his 18th birthday he will be magically cured. I've only told him I'm making no such promise as he may not sue me for my millions when it doesn't happen.

[peglem]

Okay so PANDAS is pediatric as the name says but my question (and DS' too) is what happens in the future? Eventually will he simply out grow it? Do some symptoms persist?

 

I could stumble through more questions but I'm not even sure what to ask. I've seen references to kids in their late teens with exacerbations still so what can we expect.

 

DS10 would like me to promise him that on his 18th birthday he will be magically cured. I've only told him I'm making no such promise as he may not sue me for my millions when it doesn't happen.

I believe the "pediatric" means pediatric onset. Sorry.

 

But, in adulthood exposure to strep, theoretically, is greatly reduced (don't let your children become school teachers!). Also, though, the immune system matures throughout childhood, according to what I've read in the literature. On the other hand, PANDAS seems to screw up the immune system, so who knows?

Edited June 7, 2010 by peglem

[tired mom]

Someone help me out here. Does anyone remember reading that 50% of children will outgrow Pandas by late adolesence???? Not in my case though

[becjonz]

But, in adulthood exposure to strep, theoretically, is greatly reduced (don't let your children become school teachers!).

 

or let them visit me since I am a teacher and exposed to it all. lol

Edited June 7, 2010 by becjonz

[EAMom]

Here's the turkish paper...several men with untreated (childhood onset) PANDAS http://www.turkpsikiyatri.com/en/default.a...icle&id=592

 

They had pretty severe problems that persisted throughout adulthood.

 

One difference is that their PANDAS was UNTREATED in childhood. Our kids' futures are going to be better b/c they are TREATED...even those without IVIG (just high dose abs) might do well (eg Sammy).

Edited June 7, 2010 by EAMom

[peglem]

But, in adulthood exposure to strep, theoretically, is greatly reduced (don't let your children become school teachers!).

 

or let them visit me since I am a teacher and exposed to it all. lol

I was a kindergarten teacher throughout most of Allie's childhood. I quit teaching 5 years ago so I could take care of Allie.

[airial95]

Someone help me out here. Does anyone remember reading that 50% of children will outgrow Pandas by late adolesence???? Not in my case though

 

I don't think you're crazy - I don't remember reading a specific percentage, but I also thought that I read that "most" children will outgrow it. This is the same information we got from our Dr. - he said that "right now" they think that "most" children will outgrow it by their early 20's - about the time their immune system fully matures.

 

However, he also noted that the research is still far from conclusive, and since they've only started really studying it 10+ years ago it's still way to soon to be able to say whether they outgrow it or not. (I thought that was a really good point myself - if we are still in the "infancy" of research - it's really going to be what happens to OUR kids that will show them how this all plays out!)

Our Dr also will be the first to tell you that he doesn't know everything there is to know either. (Although - I have to admit, with all of the time I spend on here and reading all of the various papers and info provided by parens who see Dr. K, Dr. T and Dr. L - our simple little pediatrican seems to be fairly on the ball with what's up - I can't complain!)

[becjonz]

But, in adulthood exposure to strep, theoretically, is greatly reduced (don't let your children become school teachers!).

 

or let them visit me since I am a teacher and exposed to it all. lol

I was a kindergarten teacher throughout most of Allie's childhood. I quit teaching 5 years ago so I could take care of Allie.

I wish I could do that at times. Last Friday I felt fairly useless at work after dealing with a child at home who I didn't even recognize as my son. However, as a single mom...no such luck. But I'll take that any day than seeing my son yelled at by his father for his anxiety or have a parent in the house who doesn't really believe this PANDAS thing and thinks it is just a mom with an overactive imagination. (no I'm not bitter at all, why do you ask? lol)

 

If I remember your story correctly Peglem I can understand why you had to quit. I feel so far I'm blessed that in the grand scheme Matt's PANDAS is not nearly as severe as some as I have read on here.

[kimballot]

Here's the turkish paper...several men with untreated (childhood onset) PANDAS http://www.turkpsikiyatri.com/en/default.a...icle&id=592

 

They had pretty severe problems that persisted throughout adulthood.

 

One difference is that their PANDAS was UNTREATED in childhood. Our kids' futures are going to be better b/c they are TREATED...even those without IVIG (just high dose abs) might do well (eg Sammy).

 

Now THAT is a scary paper!

[wornoutmom]

I wonder if the "outgrowing" it thing came from observations of Tourette's syndrome, where many (but not all obviously) seems to "outgrow" their tics. Actually I found the Turkish paper to be uplifting in that the PEX seemed to still help even at the adult age - meaning it might never be "too late"!

[kimballot]

I wonder if the "outgrowing" it thing came from observations of Tourette's syndrome, where many (but not all obviously) seems to "outgrow" their tics. Actually I found the Turkish paper to be uplifting in that the PEX seemed to still help even at the adult age - meaning it might never be "too late"!

 

Yes - you are right. The turkish paper is uplifting... just scary to be so close to the other side... scary where our kids would be without treatment... without an understanding of the underlying infection. Sad that those men suffered for so long and nothing anyone did helped.

 

I worked with people with mental illness quite a bit early in my career. The Turkish men sound like so many of them. Some of the people I worked with were in a geriatric ward of a state psychiatric hospital. I was a student at the time, so I would often stay late and read the old archived files. I always wanted to understand when the people changed from being someone's child or brother or sister to a "mental patient". There were so many times when the mental illness was preceded by a fever or an illness or a head injury. At the time, I certainly understood the head injury piece, but I never really understood the fever or illness.

 

It is scary that the only difference between them and my son is the year. It is 2010 and we have the internet and information on PANDAS. If it were 1910 we would not.

 

So... it is both scary and uplifting!

[dut]

Oh yeh... thank god for the internet! I'm grateful for google, mommy instinct/tenacity and our ped's office - in that order. Without the internet, I truly believe, we'd be in psych drug ######.....

[EAMom]

I wonder if the "outgrowing" it thing came from observations of Tourette's syndrome, where many (but not all obviously) seems to "outgrow" their tics. Actually I found the Turkish paper to be uplifting in that the PEX seemed to still help even at the adult age - meaning it might never be "too late"!

 

And I think if these men were treated aggressively with antibiotics AND kept on good prophylactic abs they might have done even better.

[norcalmom]

At puberty either your child will get better, or ..you're too late to treat it! Thats the message we've been hearing, but I'm not sure where this is coming from.

 

I'm very happy to see this Turkish study. Thank you for posting! Its scary and tragic, but at least we are in the time that we are, not the middle ages (or even 10 years ago). I feel we are ont he cusp of very big changes in how we treat "mental" health problems.

 

Are there studies out there that say you CAN'T treat this after puberty? Why does Dr K's site say this? I feel like I am being forced to do IVIG or PEX because of my childs age...if I had more time maybe his system and abx, steroids would take care of it itself. He is 11...he could start puberty anytime. Obviously the Turkish study makes those of us who have a case somewhat in remission, a little more comfortable with waiting it out.

 

I can't find ANY data on long term for pandas kids, so where does all this - "IVIG and abx not efective after puberty come from?"

 

Just because Swedo only let kids into the study doesn't mean the disease only effects kids.. They just didn't include them in the study, they were trying to keep the strep association tight and get the closest to "onset" so show the temporal association. I understand that. What I'm irked by is the criteria for the study and the diagnosis should be two different things! Sudden onset irks me too, what is sudden? one hour, one week, three weeks? OK, I'm ranting. Sorry. We didn't have overnight onset, or high titers, and can't even prove a strep association - since 8 months had passed since "onset". The second time he exacerbated all the symptoms happened within a week of each other (thats when I realized the other stuff going on besides the tic were symptoms) is that sudden enough, or do we wait until a third time?

 

Who's to say it isn't like allergies are sometimes. You may be be able to eat peanuts a couple times with only a hives or a rash, but the third time might kill you.

Done ranting now. Thanks for listening. And thanks for that study!

[smartyjones]

What I'm irked by is the criteria for the study and the diagnosis should be two different things!

 

i'm with you on your rant, norcalmom! my son doesn't technically have a pandas diagnosis b/c he's never had an ocd diagnosis. lucky for us, an astute behavioral therapist listened, observed and pulled up pandas. low and behold, high titers, active strep and 100% remission with abx. no one else we were seeking help from was on her wavelength.

 

so far, it hasn't been an issue - but if i need school intervention in the future, will my ped write that diagnosis? i think . . . but am not sure.

 

the criteria for study and diagnosis should be different!