How many PANDAS kids are gifted?

[SarahJane]

In addition to being 2ce Exceptional (gifted with a learnind disorder), it's important to note that there are different ways to be gifted. You tend to think of the kid who is the brainiac, but definitions can extend past global intelligence. For example, here's the definition in my state: “‘Gifted and talented student’ means a pupil identified as possessing demonstrated or potential ability to perform at an exceptionally high level in general intellectual aptitude, specific academic aptitude, creative or divergent thinking, psychosocial or leadership skills, or in the visual or performing arts.” In some cases, psychomotor may also be considered...think of the star athletes. Whether your child is identified or not, they may excel in an certain area that may not be picked up on in general gifted programs. Great hand/eye coordination for video games likely counts! Maybe they're artistic or have a flair for showmanship or drama. My son is not really a little professor...he does well academically, but he'll blow you away with his creative/divergent thinking. (For example: he was a thunderstorm for Halloween--and was the only one on our block.) He makes many connections that you'd think a child wouldn't be able to make. It makes sense to me that "giftedness" or something else (not sure what) works as a defense mechanism for our kids. I told my husband that it could even be a function of evolution. My son likely wouldn't have been a hunter (not sure he could take down a wooly mammoth). BUT he could act out the hunt by the bonfire as entertainment or help devise a system for ensuring clean water. Like maybe he needs to stay in the cave so he can help find a new cave when ones needed. And who knows, maybe he could get the mammoth too but it would involve a highly devised attack vs. spear to the chest in a face-to-truck showdown. After we get our kids thru all this, who knows what they'll do in the future. Now mine is destined to be an archeologist studying wooly mammoths or a speleologist (scientific studier of caves--was going to say spelunker but Google tells me it means amateur & apparently cavers are in the middle).

 

I do think there's something involved with brain development here. Whether it's happening to gifted kids OR there's another common feature...I hope someone is looking for the connections. I think once PANDAS (or whatever they end up calling it) is unlocked, it's going to affect so many other things. It's related to psychology/psychiatry (obviously), so many areas of biology--neuro/immune/endocrine/whole body really, education system (as it shows how behavior conformity is valued so highly), doctor/patient relationship (listen to parents!), pharmacology (meds, vaccine schedule), parenting books (does any of that stuff EVER work for you? Me neither!)...really so much can be affected. Maybe it will all be worth the wait! But I wish they'd hurry up...I get impatient waiting for microwave popcorn.

[MomWithOCDSon]

Yes, our son has tested in the 99th percentile. He is now in 6th grade and learns everything in class - he gets mad when I suggest that he needs to study for a test. If a teacher says it, he remembers it.

 

We did have something very strange happen just over a month ago during the worst flair up we have had in tics over the last 7 years. The flair up was awful and sudden - constant head and neck jerks that were very severe and he had nervous energy like he had consumed tons of caffeine. We kept him home from school because the tics were violent head movements and he could not sit in one place. While he was home, he worked on the math assignment he was missing at school. It was like sitting with rainman. He was doing extended division problems - he would read the problem and then write the answer without even thinking, pausing or doing any work. I was 3 or 4 problems behind him trying to check his work. I figured they were wrong since he did not even appear to be thinking, but they were all right. It was like he could see the answer in his head as soon as his eyes read the problem. He has always been good at math, but I have never seen him work like that. This behavior lasted for just a day. We made a change in antibiotics and moved to a very high dose - the tics were almost gone the next day - we have never had a flair up calm down so quickly. Anyway, it sounds crazy, but I have to say it was like the mathematical part of his brain was working differently during this flair up.

 

Yet another example of twin PANDAS sons of different mothers! Our DS is also 99th percentile and has the memory of an elephant. When he's been under the weather PANDAS-wise, he's complained that he's done his math homework "without thinking about it" or "automatically." He says he's can't remember thinking about it or how he did the problems! In our case, though, HE'S the one who's assuming he's gotten them wrong because of his OCD doubting, but they always turn out right. It's crazy! Glad to hear that someone else has had a similar experience; it should lend some comfort to our DS to know he's not alone (once again!).

[thereishope]

For those that haven't had their child tested, some school districts will "identify" them after they have reached a grade where they take standardized tests. So, if your child is younger and you wonder, but don't want to go through official testing, you can wait and see. The school contacts you if they fall into the catagory. My oldest (non-PANDAS) was identified this year in the fourth grade. As for my youngest, no testing has been done (standardized testing doesn't start until the second or third grade in our state) and I personally am indifferent anyway.

[momto2pandas]

Oh yes. I found it very hard to explain to doctors/teachers that I thought my son might be impaired when he was testing at least 4 years above age/grade level. Luckily, his teachers always saw the variation in his ability over time, so they got what I was talking about. This year, after having gotten IVIG since April and staying pretty much healthy, my 6-year-old was tested during the first week of school and was found to be close to the 8th grade level (7.6) in his weaker academic subjects, higher in others. That makes about 6 years ahead of grade level, so he's jumped up a couple of notches. His IQ tests were apparently the highest ever seen by the testers for our county. We've been thinking about applying to Davidson but haven't done so yet.

 

My 4 year old is also at the top of his class and has been reading, etc. since 2, but we have never had him formally tested.

 

I was like that too. Skipped 4 grades, first in my class at Harvard. Psych would not tell me my IQ as a kid, just that it was the highest they had seen in 20 years of testing at Princeton U. In fact, they figured the IQ must be the reason I was "crazy" as a kid, that a mind like that essentially couldn't function normally. Believe it or not, part of their strategy to address my psychiatric issues was to give me instruction, as a teen, in "dumbing down" in order to "assimilate better in society". My parents probably spent several thousands on that BS.

[EAMom]

So (in general) I would think that highly intelligent (aka "gifted") PANDAS kids (you and Emerson as examples) would have a higher chance of "bouncing back" (still able to succeed in school, etc.) despite PANDAS symptoms.

[airial95]

We've gone through a ton of different assesments in the last 6 months - he's tested "far above average" on all of them developmentally. The one assessment summary did say "likely gifted" - which was ironic to my husband and I because that was the one assessment where he was the most uncooperative (not answering questions he knows the answers too, not listening or following instruction.) He was only 2 1/2 at that time.

 

Unfortunately, our biggest problem - trying to get his IEP done for ESE pre-K services with the school district (with the goal of preparing him for regular placement in K) is that because he's so ahead developmentally - his PANDAS obviously must not be affecting his academic performance. (According to my new best friend at the school district anyway). She basically said that since my kid is really smart, the massive defiance, violence, rage and debilitating OCD that we encounter isn't a problem. So it's like if our kid wasn't so smart, we'd have an easier time getting the services that the school district has already identified that my son should have...nice.

[SarahJane]

Talked to Amend today. Mostly it was a whirlwind of me telling him how I had to go about getting the dx & treatment. He said that certainly the medical side has to be involved and agreed that the dx made sense with my ds. (Apparently he worked with another patient a few years after their dx...wasn't involved in dx'ing. I told him to give them my name--they're not here in this city tho'.) I did tell him that me & a few others would love to see PANDAS in the next edition of "Misdiagnosis" since the symptoms read like the Table of Contents of that book, which he said might be revised for the DSM-V. A lot could happen with PANDAS before the next DSM is released in 2013 (let's hope so anyway!), so maybe it WILL be in there. I gave him my theory of it being part of the asynchronous development seen in gifted kids, and that it could be in the brain development because it was so weird that so many gifted kids are affected. I know my theories don't hold much scientific weight. BUT he is a respected doctor in the field, so maybe it will help the cause.

[momto2pandas]

I have always wondered if the giftedness has something to do with excessive permeability of the blood brain barrier, just permeability of the brain in general. I think any allergist can tell you that kids with allergies - basically those in a constant state of inflammation - tend to be smarter and more creative than other kids; this is a known finding. According to the textbooks, highly gifted children are also more sensitive to e.g. food dyes, in particular Red40 has been mentioned - and we know that they are sensitive to sensory stimuli - which makes me wonder if in general, the brains of highly gifted kids aren't as "well sealed" as those of other kids. This might make them more permeable to toxic stuff (including antibodies), but also to information, essentially. I also suspect that this set of children build more connections across the left/right brains than do most. This is another area where I have a spiel that I could go on and on about...

 

I do think that the association is also why these genes are prevalent in the population (in my opinion). The adverse effects of the genes mostly affect people during the childhood (non-reproductive) stages, and assuming that they make it through those stages by hook or by crook, many go on to be very successful and socially adept adults who reproduce just fine.

 

And yes, certainly for me, jumping several years ahead sure helped me to bounce back after I had to spend 2 years in the hospital as a teen - I just wound up going to college 2 years younger than my classmates rather than ridiculously younger. I think that the IQ boost helps with the "by hook or by crook" asepct of what I was talking about above, too. I have noticed that even my young kids have an amazingly mature perspective on their conditions and treatments.

[SarahJane]

http://www.washingtonpost.com/wp-dyn/content/article/2006/03/29/AR2006032902182.html

There are likely other articles out there, but I ran across this good one the other day that deals with brain development & intelligence. And, if you Google the name of the researcher at the bottom, Sowell @ UCLA, you can get to some other cool stuff on her research site & the main site. I estimate that you can kill at least an hour or more going down the Internet rabbit hole with all this. Have fun Alice.

 

http://www.nytimes.com/interactive/2008/09/15/health/20080915-brain-development.html

This is neat graphic about early brain development too.

 

It is important to note that nurture vs. nature is also at play. Being supported & loved & in a good atmosphere does wonders for a child, and clearly all of us here work to do that for our kids. That's how we all found PANDAS for the most part & why we wrestle with our decisions so much. I think we're all aware that there are lots of kids with this condition that are out there undx'd/misdx'd for various reasons...it does take diligence, persistence, & a certain gumption to pursue all this. We are pioneers whether we like it or not.