Another curious observation

[dut]

Hi - I've posted this one to death in the past but here goes again 'cos although anecdotal, I reckon it points at the real scale of the PAND (AS?) problem....

 

My mother-in-law was a teacher and then principal at a small elementary school in the UK for 20 years. Each year's intake was 28ish kids, 4-5 years old. Every year 2 kids out of the new intake kids (regular as clockwork) would get sudden onset of OCD type contamination fears, sometimes also showing ADHD symptoms.

 

She said they would sometimes try and guess which students it would be (as they were often the sensitive ones). All would usually resolve in about 6 months, sometimes the ADHD symptoms remianed, usually for the boys.

 

That's a rate of 1 in 14.. 7% or so, if my math hasn't failed me... now that is high...

[P_Mom]

Reactive....are you in the Pittsburgh area? What doc did you see that diagnosed PANDAS? Did he/she treat it??

[Kayanne]

Hi - I've posted this one to death in the past but here goes again 'cos although anecdotal, I reckon it points at the real scale of the PAND (AS?) problem....

 

My mother-in-law was a teacher and then principal at a small elementary school in the UK for 20 years. Each year's intake was 28ish kids, 4-5 years old. Every year 2 kids out of the new intake kids (regular as clockwork) would get sudden onset of OCD type contamination fears, sometimes also showing ADHD symptoms.

 

She said they would sometimes try and guess which students it would be (as they were often the sensitive ones). All would usually resolve in about 6 months, sometimes the ADHD symptoms remianed, usually for the boys.

 

That's a rate of 1 in 14.. 7% or so, if my math hasn't failed me... now that is high...

 

I watched one of Swedo's speeches in which she said (I'm going by memory) that 1 in 20 families were susceptible to Rhuematic Fever

[dcmom]

My pediatrician told me we needed "positive reinforcement" at the onset of pandas.

 

It is the only thing in this whole disaster that still makes me chuckle.

[reactive]

Reactive....are you in the Pittsburgh area? What doc did you see that diagnosed PANDAS? Did he/she treat it??

I live near Akron, OH and five years ago we drove our son for a consult with a Dr. Gilbert in Pittsburgh as he had done a lot of research in OCD and young kids. He did not charge us. At the time, I was desperate, ds was acute, and we could not get in with a psychiatrist for 8 months (think Beth Maloney looking for help in the beginning). He did not treat our son as he could only offer standard therapies. My son still at age 9 has never been given anything other than standard therapies. But, Dr. Gilbert did say that our ds presentation was classic PANDAS. It was just that we did not have proof of strep at the time (an other story). He said " it doesn't matter if it is strep that caused it or not, you treat it the same anyway". That was five years ago.

 

I am only on this current journey now due to the birth of pandasnetwork.org. We are lucky, in that although we have issues, my ds9 is very mild compared to many of the families on this forum. But I still want him to have any and all help he can get. My dh and I get so terrified still that he may get severe again like he was at age four, and be gone for months.

 

I think we all should realize and be grateful for Diana and pandasnetork... just look at how many postings are on this forum alone in the short time it has existed...in the defense of physicians everywhere who are unsure of PANDAS...they have not seen what we have all seen. And I about "dropped a load" (sorry ) when I found these sites...and I found them by accident. I truly believe all of these stories and internet connections may help in the validity of this disease.

[dut]

dcmom - you should go back and ask that dr what he/she meant with regards to "positive reinforcement" in a PANDAS setting - perhaps getting your children to lick kids with confirmed strep?

 

unfortunately, we've had a few of those types of comment, some make me want to chuckle in hindsight, some make me want to slap a few people

[airial95]

Our pediatrician told us the same thing 6 months ago when we first raised questions about his "terrible twos" behavior. However, after having a "we're pulling our hair out and the aggression is getting worse" conversation some time later, he looked deeper and diagnosed PANDAS. I can't fault his initial advice because with my son's age it was hard to tell the difference between his PANDAS related OCD fits and a two year old temper tantrum.

 

Now that he's been on abx for a bit, we can tell the difference in his PANDAS tantrums and what we call the "I just want a cookie" fits.

 

My pediatrician told me we needed "positive reinforcement" at the onset of pandas.

 

It is the only thing in this whole disaster that still makes me chuckle.

[Fixit]

Just another interesting point that Fixit put into my head. This is our rate of TS

 

 

More than 300,000 people in the UK have TS, including one schoolchild in 100.

 

However, we have no data on PANDAS, and I am really finding it hard to complete the data on ASD reported cases as they are combining them with all sorts of other conditions that I'm not looking at.

 

 

Jules

 

Thanks for saying i'm interesting.... I feel so uninterestin and unintelligent compared to everyone here(especially with spelling)

 

Jag..that number you just put out there is crazy your saying 4 out of 400 so 1out of 100 has ts.(that's not what the tsa says)...but really 15% since its only the caucasioions, so that makes 60 kids in that group , making it 1 out of 15 or 6%.....

that makes me think of something else.....could it be a particular strain in a particular year that is more potent that effected these kids, be it when they were 3 or when they were 7 , since there is such a cluster.....and i've heard that ts effects all races equally but i'd like a new study please

[Chemar]

.could it be a particular strain in a particular year that is more potent that effected these kids, be it when they were 3 or when they were 7 , since there is such a cluster.....and i've heard that ts effects all races equally but i'd like a new study please

 

not all kids who have TS have PANDAS or have had strep infections

[Fixit]

.could it be a particular strain in a particular year that is more potent that effected these kids, be it when they were 3 or when they were 7 , since there is such a cluster.....and i've heard that ts effects all races equally but i'd like a new study please

 

not all kids who have TS have PANDAS or have had strep infections

 

 

ok maybe pitands since no one really seems to know, they could have other triggers, i was inferring this cluster could have a common trigger, its SUCH a large number is a small group/more so in the subgroup/ compared to anything i've ever heard

[Fixit]

I watched one of Swedo's speeches in which she said (I'm going by memory) that 1 in 20 families were susceptible to Rhuematic Fever

 

So could you glee from her speech, if you have had RF in the past you are more subseptable to somthing later or would it just be that immediate time related to RF

[JAG10]

I was saying that of the 400 students in my elementary school, 4 have a dx of TS. All four of those students happen to be white and male; the school is approximately 1/3 white, 1/3 asian, 1/3 african american boys and girls. Of the 4 boys two of them are related. 4/400 is high; we've had a faculty in-service on TS and this is why we are having a special assembly for the students as well.

 

You have to keep in mind the specific sample I'm referring to is all school-aged children which would make the incidence rise compared to the US population. Jules had quoted 1:100 of school children in the UK which is the same as my particular school.

[jewels]

The poll is looking very 50/50 regarding the onset of whatever we call it now...... "PANDYPITS".

 

My personal thoughts are that parents see an onset the most with Strep, because this is the most common infection that a child would come into contact with the most. Not a nurse, DR etc but I would love a more educated view on that.

 

So that leaves me to think.....the child is born with the "missing ? gene"

 

Could it be a prior virus/bacteria when very young (virus seems my favourite - flu or chicken pox) that sets the autoimmune trigger in motion

 

then the next infection that a child contracts be it strep, which they would have more chance of catching or

 

another colony type infection that activates the autoantibody symptoms. Which would make it a 100% genetic autoimmune condition. And then that would stop the grey area for the

 

many Drs that find all this confusing. And the parents who think their children can catch it from ours!

 

All thoughts gratefully received

[Fixit]

The poll is looking very 50/50 regarding the onset of whatever we call it now...... "PANDYPITS".

 

My personal thoughts are that parents see an onset the most with Strep, because this is the most common infection that a child would come into contact with the most. Not a nurse, DR etc but I would love a more educated view on that.

 

So that leaves me to think.....the child is born with the "missing ? gene"

 

Could it be a prior virus/bacteria when very young (virus seems my favourite - flu or chicken pox) that sets the autoimmune trigger in motion

 

then the next infection that a child contracts be it strep, which they would have more chance of catching or

 

another colony type infection that activates the autoantibody symptoms. Which would make it a 100% genetic autoimmune condition. And then that would stop the grey area for the

 

many Drs that find all this confusing. And the parents who think their children can catch it from ours!

 

All thoughts gratefully received

 

Ok first PANDYPITS made my drink come out my nose,, and is my favorite name so far and since you are the inventor would you feel comfortable if it flips to PITTYPANDS...cause when you talk real quick it might come out either way...

 

And i am comfortable with your explanation for the this whole spectrum of disorders...maybe each in 1 chomosome next to each other on the same chain, or like you said maybe its alll the same gene just expressed differently in each person...

But i want to untrigger it, as we all do.

Again can you tell i'm very technical

[jewels]

I wanted a stinky horrible name for this stinky horrible condition.

But, does it mean something bad in US!

 

I think its a small gathering of isolated genes and depending on enviroment/gut health and other insults that happen, I think it will express itself in various levels.

 

I do see a positive link to anglo-saxons.