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Just thought I'd chime in because my ds actually did have a PET scan that showed inflammation of both the basil ganglia and thalumus. The thalumus information surprised me but the more I read up on it it would account for troubles with enuresis and sleep disturbance.

 

Wornoutmom - First off - I hope all is well with your family....

 

Second- thanks for chiming in! I was thinking of your son when I posted because he is the only one I have seen who had a PET scan. My understanding is that PET show metabolic activity level - as opposed to CT scans that just show the structures. So

 

I am wondering if all that Cam Kinase II over activation could happen without brain inflammation.

 

When your son had his PET scan - did you get a report that talked about the activity level of different parts of his brain?

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I agree with that. I think there is a real selection bias going on here, since it is the parents who are driving this and not the front-line doctors.

 

I also think that in about 5 years, there will have been a sea change in diagnosis, testing, and treatment for childhood OCD and tics -- and it will have been because of parents like the ones in this group.

 

 

I asked Dr. K about the intelligence issue from a different angle. I wanted to know how he could describe the phenotype of a pandas child as an infant prior to them having had the initial episode. He referred me to his single light switch; one wire in, one wire out; it gets overheated but no problems. Now he said imagine a panel with 500 switches, all those wires going in and out; that gets overheated and BIG problems because there are so many connections. I think he hypothesizes that highly intelligent children are genetically predisposed because they have many more neuronal connections to get overheated, crossed and catastrophe. So, when I wanted to know how he knew my child was fussy, intense, difficult to get to sleep, not particularly cuddly; that is a phenotype of highly intelligent infants.

 

I suspect the "highly intellligent" child and "highly educated" parent describes the current PANDAS phenotype because we are more likely to notice changes in children with higher intellect and because parents with higher education are more likely to search the internet and try to find the answers for their child. My suspicion is that, one day - when we are really able to test for PANDAS- we will see many children from a wide variety of cognitive levels and a wide variety of socioeconomic backgrounds who have PANDAS. ... just my suspicion here

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lfran- What have you thought about the age of onset of "typical" OCD? I've read a few places 7, but most are 10 and over. Why do you think this isn't being raised as a PANDAS red flag? Aren't many of our kids developing OCD too young for "typical" OCD?

 

And regarding IQ... I was told my daughter had co-morbidity of OCD, ADHD and mood disorder. When I asked why the cognitive decline, the loss of previously learned academic skills, the regression from the abstract to the concrete? Why were standardized academic and cognitive measures that began in the superior and above average ranges falling to the average and below average ranges? Our psychiatrist told us IQ decline was typical of children with co-morbid mental health disorders!!! I said "Really? I thought that could only happen with brain injury?" She said "Absolutely typical." grrrrrr :D

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i know i have no business in posts like this, but. . . my head starts wondering and i can't help myself!

 

we talk about the strep antibodies affecting the brain. is there any proof that it is/is not also the actual strep bacteria in the brain? i mean, we do have proof of strep in the throat, the gut and the skin - so why not the brain? it's proven that the lyme spirochete actually likes to live in the brain tissue, yes?

 

there is proof that it is the actual antibodies causing trouble, yes? is there proof or disproof that the bacteria could be there, too?

 

does this make a difference in the fight to eradicate strep? i have trouble understanding the "intercellular" concept. is this similar to the lyme borrelia changing to a cyst state? could the strep bacteria change state in the brain?

 

do we know that it's limited to the basal ganglia? could the seeming groupings of symptoms correlate to actual other areas of the brain being affected?

 

please excuse my ignorance, but the basal ganglia is different from the frontal lobe, correct? and the frontal lobe is labeled the emotional control center - involved in motor function, problem solving, spontaneity, initiation, judgement, impulse control, social behavior, flexibility, problem solving, perseverating, non-compliance with rules, emotional liability, immature behavior, dramatic change in social behavior. that right there describes my son's issues better than ocd ever has.

 

i know i'm way too stupid to start this discussion, but am interested in what others have to say.

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Kimballot and Mkur,

I completely agree with you!

 

The less educated (and economically disadvantaged) PANDAS parents likely just have their kids mis-diagnosed with other things (ADHD, bipolar, oppositional defiant disorder, tourettes, or perhaps just not diagnosed, but lots of problems in school and at home)...I suspect these kids have a pretty high probability of ending up in special ed, foster care, on psych. drugs, and maybe eventually on drugs/alcohol and in jail.

Edited by EAMom
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Kimballot and Mkur,

I completely agree with you!

 

The less educated (and economically disadvantaged) PANDAS parents likely just have their kids mis-diagnosed with other things (ADHD, bipolar, oppositional defiant disorder, tourettes, or perhaps just not diagnosed, but lots of problems in school and at home)...I suspect these kids have a pretty high probability of ending up in special ed, foster care, on psych. drugs, and maybe eventually on drugs/alcohol and in jail.

 

Many of us here are well educated and possess sound finances yet our children were misdiagnosed , improperly medicated/dx'd and some even hospitalized. Those of us with pre-teens and teenagers who had early/sudden onset in the first decade of this century are just recently presented with the opportunities for proper diagnosis and treatment. "Tenacity" has the best username because that is what it has taken (and often some luck) for parents to not give up, to not accept these changes and declines that don't make sense "bcs they were born that way" without some catalyst throwing that change into motion.

 

As I've posted many times, in the Philadelphia area help in non-existent. I would help anybody seeking help. But I struggle with what help to offer/provide when there is no local, certainly no "in-network" help available. Unfortunately, at this moment we are still at the point where you need Tenacity AND some financial resources to obtain proper treatment.

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I can tell you that I taught for 14 years (mostly Kinder, but @ 4 years of older kids) in a low SE school, and in hindsight, I can see many cases of probable PANDAS kids. Wish I could go back and contact some of those parents about what I know now. Most ended up w/ psychiatric treatment and were treated by the schools as behavior problems.

 

Particularly, the group of kids who were born the same year as my PANDAS child was rife with subtle and not so subtle neuro symptoms. I can tell you having a classroom full of 5 year old PANDAS kids is not fun! I wonder if there was a particular strain of strep going around that affected them, or was it that they were all in the group who were born the 1st year that newborns were vaxed w/ HepB on the day they were born? That was my last year teaching kindergarten, so I don't know if the next group was as bad...But, that same group in 4th grade was still having the same sorts of problems.

Edited by peglem
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I can tell you that I taught for 14 years (mostly Kinder, but @ 4 years of older kids) in a low SE school, and in hindsight, I can see many cases of probable PANDAS kids. Wish I could go back and contact some of those parents about what I know now. Most ended up w/ psychiatric treatment and were treated by the schools as behavior problems.

 

Particularly, the group of kids who were born the same year as my PANDAS child was rife with subtle and not so subtle neuro symptoms. I can tell you having a classroom full of 5 year old PANDAS kids is not fun! I wonder if there was a particular strain of strep going around that affected them, or was it that they were all in the group who were born the 1st year that newborns were vaxed w/ HepB on the day they were born? That was my last year teaching kindergarten, so I don't know if the next group was as bad...But, that same group in 4th grade was still having the same sorts of problems.

 

Peg, this brings up a great point; that we need to start including the calendar year of onset, not just our children's specific ages. I think it was Tired Mom who referenced 2002 as a year she noticed many parents referencing, but this was my suggestion to add to the monkey map. Were there years that loosely correlated to areas?

 

I know what you mean. I'm an SLP in a district that borders the city of Philadelphia. I had a student this year with so many issues; was out with strep and came back with vocal and motor tics om top of all the other issues he already had. I did call the mom and speak to her about pandas bcs she is an OT and I thought she would be able to pursue this if it unfolded that way, but "cagey" would definitely describe my conversation.

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I can tell you that I taught for 14 years (mostly Kinder, but @ 4 years of older kids) in a low SE school, and in hindsight, I can see many cases of probable PANDAS kids. Wish I could go back and contact some of those parents about what I know now. Most ended up w/ psychiatric treatment and were treated by the schools as behavior problems.

 

Particularly, the group of kids who were born the same year as my PANDAS child was rife with subtle and not so subtle neuro symptoms. I can tell you having a classroom full of 5 year old PANDAS kids is not fun! I wonder if there was a particular strain of strep going around that affected them, or was it that they were all in the group who were born the 1st year that newborns were vaxed w/ HepB on the day they were born? That was my last year teaching kindergarten, so I don't know if the next group was as bad...But, that same group in 4th grade was still having the same sorts of problems.

 

BUT HOW DO YOU ADD IN THE AGE OF ONSET WHEN YOU DONT KNOW WHEN IT HAPPENED??

 

 

 

Peg, this brings up a great point; that we need to start including the calendar year of onset, not just our children's specific ages. I think it was Tired Mom who referenced 2002 as a year she noticed many parents referencing, but this was my suggestion to add to the monkey map. Were there years that loosely correlated to areas?

 

I know what you mean. I'm an SLP in a district that borders the city of Philadelphia. I had a student this year with so many issues; was out with strep and came back with vocal and motor tics om top of all the other issues he already had. I did call the mom and speak to her about pandas bcs she is an OT and I thought she would be able to pursue this if it unfolded that way, but "cagey" would definitely describe my conversation.

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BUT HOW DO YOU ADD IN THE AGE OF ONSET WHEN YOU DONT KNOW WHEN IT HAPPENED??

 

good point.

Maybe it would work to have age range categories:

infancy(< 1yo)

early childhood (1-4yo)

early school age (5-8, or K-2nd grade)

etc.

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lfran- What have you thought about the age of onset of "typical" OCD? I've read a few places 7, but most are 10 and over. Why do you think this isn't being raised as a PANDAS red flag? Aren't many of our kids developing OCD too young for "typical" OCD?

 

 

i think this is an important point due to our personal story. we sought help from a behavioral therapist. she was running through her list of "disorders" and he seemed to disprove whatever she was thinking just after she thought it. she said, and it's in my list of quotes i will never forget of the good and bad that was said to me, "what you're describing sounds like OCD but he's awfully young for that". he was 4 1/2. with her suggestion, we found ASO of 898 and positive throat culture. NO ONE else we were consulting was thinking anywhere near here -- ped and "behavioral specialist" ped.

 

without her, I truly believe we would have been on the OCD/ODD train of trying to treat him behaviorally for YEARS!

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You know, I'm not too familiar with the OCD info, as DS9's PANDAS is mostly tics (although I wonder where motor tics end and motor compulsions begin for some of these kids. How do we tell the difference?)

 

However, given that a lot of leeway is given to so many kids as "terrible twos" or "just a stage", I would think that a lot of childhood OCD could start pretty early and just not be recognized. I have read so many stories of parents getting an autism diagnosis for their child and then in retrospect realizing that the lining up of toys and things like that weren't just personal quirks, etc. I remember a friend of mine had a child who would eat only yellow things. No one mentioned OCD and I guess that phase passed -- but it just goes to show how normal childhood and OCD can overlap.

 

 

 

 

 

 

lfran- What have you thought about the age of onset of "typical" OCD? I've read a few places 7, but most are 10 and over. Why do you think this isn't being raised as a PANDAS red flag? Aren't many of our kids developing OCD too young for "typical" OCD?

 

And regarding IQ... I was told my daughter had co-morbidity of OCD, ADHD and mood disorder. When I asked why the cognitive decline, the loss of previously learned academic skills, the regression from the abstract to the concrete? Why were standardized academic and cognitive measures that began in the superior and above average ranges falling to the average and below average ranges? Our psychiatrist told us IQ decline was typical of children with co-morbid mental health disorders!!! I said "Really? I thought that could only happen with brain injury?" She said "Absolutely typical." grrrrrr :D

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The only study I remember early onset of OCD being used to help differentiate typical OCD from PANDAS was that one somebody posted from Hawaii.

 

As far as pinpointing the year of "early onset" in PANDAS, it is true that for many of us it will be a guestimate and often many, many years ago.... I like Peg's idea.

 

I specifically remember reading T. Brazelton's books, I think it was in TouchPoints, where he talks about periods of equilibrium and disequilibrium. Equilibrium is where everything is "normal", content, chugging along just fine, but these periods are interrupted by periods of Disequilibrium where there is turmoil and tantrums, disruption and sometimes regression of acquired skills, and sole focus on new skill the child is attempting to acquire which then leads to another period of equilibrium.

 

OKAY..... you mix that in with a 2-3-4 year old and the waxing and waning of PANDAS and the cascading of the child's baseline of "normal" drifting, that goalpost creeping farther and farther away from their true baseline and add in how long this has been even a possibility in online conversation??? For us, we're talking 2002-2004, who was talking about pandas then? You think pediatricians are laughing now???

 

I realize I sound plagued by guilt. I think many of us has an aspect to PANDAS diagnosis that is a thorn in our side and for me it is this early onset subset, particularly those who were early onset before any hope of identification realistically existed.

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I am not really sure why you think your questions are "stupid" - especially since clearly no one is jumping in with all the answers!

 

no - i don't think the questions are stupid - just not sure my brain can comprehend the answers.

 

regarding the use of the word 'stupid'. i was telling my dh about this post -- becasue he so loves it when i retell conversations from this forum -- and ds, 8, told me that i lost two gems b/c i used "the s word" as he calls it and my kids are not allowed to use that word. hmm - do as i do - hmm

I don't have a answer to this because it is all over my head..all I know is IVIG has worked for my dd she is 6

as far as saying the "s" word.. I LOVE IT..my dd is not aloud to say it,but sometimes we ALL feel that way I know PANDAS has made me feel stupid,I am glad my husband understands it,he did all of the research and I did all of the mom stuff to keep her happy.

Tracie

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Interesting thread! I'm a beginning student of brain science, so I sure don't have all the answers. However, I have a couple things to add to this discussion:

 

(1) Yes, other parts of the brain besides the basal ganglia can be affected by post-infectious autoimmune disease. It is known that injury to the periaqueductal gray plays a role in encephalitis lethargica -- another subcategory of post-streptococcal disease. The neurologist who recognized my son was suffering from a variant of PANDAS based his diagnosis, in part, on symptoms he attributed to injury to the periaqueductal gray.

 

(2) There's zero doubt in my mind that many kids with PANDAS/PITAND spectrum illnesses are misdiagnosed, mistreated, languishing in institutions that won't/can't really help them (God only knows, how many!). My son was one of them for a while. The psycho-analytical/criminal-justice bias in the way our entire society views mental illness is so HUGE. From the moment my child fell ill, I was treated more like a suspect than like a source of information -- by school personel, by doctors.... What happened to my child was so bad, that when I reported it everyone assumed it to be more likely that either I was making it all up or I had somehow caused the problems myself. Yet, it was obvious to me from the beginning that some terrible neurological accident had occurred. It took me three years to find a doctor who really listened to me, believed me, and understood this. Then we got the long-overdue correct diagnosis.... Now the fight to climb out of the pit....

 

 

Tenacity

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