exceptional intellect and pandas

[bigmighty]

Hmmmm.... i dont see why the nih would keep the IQ stuff secret? I was under the impression i would be told. I am getting copies of test results for my records so why would this be different.

 

I was told that the reason for the IQ testing is dual. First, they need solid verification that ever child in the study has an IQ above 70 in order for their results to be considered valid. Second, they are finding that some symptoms are different depending on cognitive competency. There are PANDAS symptoms related to diminished capacity to do math, reading, school work. In general, there seems to have been the feeling that PANDAS kids are not going to be able to continue to pass their classes during an exacerbation. What they are finding is that the kids at the highest end of the curve IQ-wise, often are able to compensate and can continue to get good grades in school, even when they are ill. I was told that NIH was considering comparing parent reports on school success or lack thereof with IQ to see if that was true within the study.

[nicklemama]

In general, there seems to have been the feeling that PANDAS kids are not going to be able to continue to pass their classes during an exacerbation. What they are finding is that the kids at the highest end of the curve IQ-wise, often are able to compensate and can continue to get good grades in school, even when they are ill. I was told that NIH was considering comparing parent reports on school success or lack thereof with IQ to see if that was true within the study.

 

I agree with this 100%. My DS is a perfect example. He never missed a beat in school. Oh, he had OCD and lack of attention and fidgeting, trouble transitioning (due to OCD), regression in social skills in school but his academic work never faltered. I have always thought it was because he was already far ahead of his grade level and could do the work easily. He was and still is a top student in his grade (2nd). He does math in his head.

 

There were many times I wondered how he was able to cope and continue to do well academically at school. He was in such a terrible state w/ his PANDAS.

Edited January 14, 2012 by nicklemama

[tpotter]

Now, here's the interesting thing...how many of the kids diagnosed with Autism and Asperger's Syndrome really have PANS? What your are describing...is sometimes considered for diagnosing Asperger's. My DS is one of those (many of his Aspeger's symptoms have abated or become somewhat better since starting treatment for PANS.

[EAMom]

As an aside, I was looking up "conversion disorder" last night. That is what they are trying to tell the parents in Le Roy the 12 girls have, and they're not buying it. Here is a quote I found from http://www.med.nyu.edu/content?ChunkIID=96743

 

"Conversion disorders occur more commonly in rural areas, among individuals with fewer years of education and of lower socioeconomic status."

 

So if you are poor and uneducated in a rural area (difficult to get 2nd 3rd opinion) your child gets a conversion disorder diagnosis. If you have more resources (education, support, money, time/know how to search the internet, see multiple doctors) then you can eventually figure the real medical issue with your child, be it PANDAS or something else (Lyme etc.), even if the first doc you see tries to pin it on conversion disorder.

Edited January 14, 2012 by EAMom

[bulldog24]

Interesting big mighty.

[bigmighty]

Interesting big mighty.

 

NIH did specifically tell me that we would not get scores or break-downs on cognitive testing unless there was an area of concern significant enough to require exploration by the school system

[EAMom]

Second, they are finding that some symptoms are different depending on cognitive competency. There are PANDAS symptoms related to diminished capacity to do math, reading, school work. In general, there seems to have been the feeling that PANDAS kids are not going to be able to continue to pass their classes during an exacerbation. What they are finding is that the kids at the highest end of the curve IQ-wise, often are able to compensate and can continue to get good grades in school, even when they are ill. I was told that NIH was considering comparing parent reports on school success or lack thereof with IQ to see if that was true within the study.

 

I think *when* PANDAS strikes will also play a factor in how a child does academically. If it strikes when a child is young, just starting school, learning math facts, learning how to write, read, IMHO that may have more of a damaging impact academically esp. if the PANDAS isn't treated aggressively and the PANDAS is allowed to brew.

 

For "Saving Sammy", well, he was relatively older when PANDAS hit him with full-force. I think that was in his favor academically. He still seemed to do well in math, despite severe PANDAS symptoms.

 

 

Also, I think every kid is different in terms of symptoms. Just how some kids get more tics, and others more OCD, some PANDAS kids might have more issues with math (or writing, or reading) than others. PANDAS symtpoms don't affect all kids evenly accross the board.

 

If the child also gets PANDAS ADHD, that likely plays a factor in school as well.

[EAMom]

edit double post

Edited January 14, 2012 by EAMom

[airial95]

Now, here's the interesting thing...how many of the kids diagnosed with Autism and Asperger's Syndrome really have PANS? What your are describing...is sometimes considered for diagnosing Asperger's. My DS is one of those (many of his Aspeger's symptoms have abated or become somewhat better since starting treatment for PANS.

 

This is a theory that my PANDAS friendly pediatrician has. If it wasn't for him, my son likely would've been placed on the spectrum instead of dx with PANDAS (he was 19 months at onset, 26 months at dx).

 

As far as EAMom's theroy as to "when" they get hit making a difference - in our experience we're not quite seeing that. Our son has always been ahead of his peers since he was a toddler, and in our son's initial assessments he was testing gifted (although, I'm not sure what that really means in a kid whose just under 3 years old ) but with delays in what they called "social awareness". He was placed in the EELP special ed pre-k class (with the help of an AWESOME day care director with a PhD in Special Ed) more as a way for him to help develop the social skills and coping mechanisms in the classroom he was losing during episodes.

 

Our biggest challenge at his IEP meeings is trying to tie his accomodations to academic goals - since he's advanced academically - it's tough.

 

He's almost 4 1/2 now, and he's reading, spelling, doing basic math (addition and subtraction) - heck, just last night while at the campfire my husband mentioned how much smoke their was when he added leaves and our son replied "That's okay Daddy - it adds to the ambiance." The kid has a better vocabulary than I do!!!

 

But what he's NOT doing right now, which he should be, is writing. He's still struggling holding a pencil, writing his name, drawing pictures that are more than scribbling. These are all things he should be able to do at this point - but the impact on his fine motor skills has been more of the issues than any cognitive impacts.

[MomWithOCDSon]

Here I am beating the "glutamate" drum again, but . . . . .

 

 

oh jeez - mom -- my lack of intellect shows in that i just can't seem to make the synaptic connections to understand glutamate. i know you've tried, but can you refer me to some remedial glutamate info?

 

i guess it's not so imperative for us b/c i had asked opinions about glutamate vs. inositol and we have appt next week that i am going to discuss inositol with dr. . . . in the spirit of not changing/adding too much at the same time. . . . still, i know i've got to somehow gear up for glutamte understanding though.

 

Smarty -- I am no expert . . . just an interested party and one for whom the "glutamate" bells continue to go off because of all the similarities I see between DS's patterns of behavior inside and outside of exacerbation and what a lot of researchers are touching on these days with respect to brain glutamate.

 

Again, I'm no expert and someone here with more scientific and/or medical training will likely correct some inaccuracies on my part. But as I understand it, glutamate is a major neurotransmitter, necessary for everyone in terms of brain function. It carries messages back and forth. But it is also an excitotoxin, so in too high quantities, it can cause premature neuronal death and demylenation of the cells. So now a whole host of conditions are thought to be at least to some extent attributable to excess glutamate in the brain, and everything from rilutek to NAC to beta-lactam antibiotics to B vitamins are being studied for their roles in helping modulate the amount of glutamate in the brain and the sentitivity of the receptors (namely NMDA) to that glutamate. Following are a few links on the topic:

 

Protecting the Brain from the Glutamate Storm

 

Glutamate Neurotransporter

 

Glutamate as a Neurotransmitter

 

In terms of glutamate's roll in the body's manufacture and uptake of serotonin (which is what you'd be giving the inositol for) and dopamine, I remain unclear. Our psych has told us that it can interfere, but not the science behind "why," and I know that Dr. Yasko makes reference to this relationship as well, but I will have to review her presentation to recall the specific mechanisms, or probably more accurately, the theory of the mechanisms. So much nobody knows at this point!

 

Happy reading!