How many PANDAS kids are gifted?

[SarahJane]

Just wondering how many of our kids fall under the gifted category (or advanced). This would be whether or not you've done formal testing or not...maybe you just suspect your child is gifted/advanced. Dr. K's phenotype mentions that many PANDAS children usually have early speech development & usually (prior to the illness) excel in school, particularly math & sciences.

 

Our ds(6) knew his alphabet by 2 (NOT just by rote recitation--could put jumbled letters in order) & was spelling/reading by 2.5 (words like "elephant"). His first words were around 9 months, but he did have a speech delay that he outgrew by around 4.5 (did therapy, OT, etc...). We did WPSIII testing when he was 4.75 & his verbal scores were thought to be underestimated (wouldn't always cooperate with tests), but his processing was above average, performance was at 99th percentile, general language was at 98% percentile. His full scale IQ was at 94th percentile BUT was affected by his lower verbal score...so it too would have been underestimated. His reading was 4 standard deviations above the mean (age was 4.75 & he was able to read on 2nd grade level w/ mid-1st grade comprehension). His math scores were also advanced for his age. His memory is remarkable.

 

The IQ testing was done when he was so young because we kept facing development questions during what I think were mild exacerbations since I suspect early onset (when I was totally in the dark that PANDAS even existed). We did formal ASD evaluations after DOCTORS started questioning his development at 2.5 (2 months after his 1st ear infection & in reaction to our concern about speech delay), & in the evaluations, we were told no autism but speech delay & the questions still kept resurfacing. The episodes would last about a month (we thought they were growth spurts) & then he'd seem so much better & we'd wonder what we were worried about. Sometimes the episodes did coincide with an illness, but I didn't make the connection until I reviewed his medical file. Once I got the "gifted" term, it explained a lot of the behaviors we'd see, and we had 1.5 yrs without questions (right after his tonsillectomy--adenoids were taken out separately back when he was almost 3). We even thought that giftedness was part of the school issues we had back in the spring when the 1st major exacerbation started. I do still think his giftedness was at play, but PANDAS was the cause. We did a questionnaire on ASD this past spring when ds's behavior changed & school was so affected, and were told that while ds showed some ASD behaviors, he did NOT meet the DSM-IV criteria. We did receive an anxiety dx. Now, we do have the PANDAS dx from Dr. K, & IVIG is next month.

[P_Mom]

Both mine are....my youngest is off the charts....and, he was the most affected by PANDAS.

[Worried_Dad]

Yeah, this topic comes up from time to time, and there definitely seem to be a lot of gifted kids affected by PANDAS. Here's an older thread on this topic:

 

http://www.latitudes.org/forums/index.php?showtopic=5672

[MomWithOCDSon]

My DS13, also.

[momcap]

I haven't had my kids tested but I am certain all 3 would be gifted if we tested them. I'm wondering if they all have PANDAS. DS7 for sure, but the other 2 have milder symptoms. I have a genius IQ (I hate saying that), as do both my siblings. I'm also pretty sure I had PANDAS and outgrew it in my early 20s.

[dabel]

Both mine are....my youngest is off the charts....and, he was the most affected by PANDAS.

 

 

 

That is interesting to me. All of mine are too. I have four boys. The one who is severely affected has ceiling out on a lot of the tests he has been given etc. The others are gifted but not to the degree this one is. He has been at the post high school level in many subjects for years. They wanted to advance him a full grade level this year after he was returning to school after being gone for about two years due to this debilitating illness The mind is a fascinating place.. Anyway, I found your comment interesting!

[EmersonAilidh]

Not trying to be cocky here but didn't want to leave this thread unanswered.

 

All I know is that I was conversing by the time I turned two. Like, had totally finished learning to talk & was forming "perfect" sentences & holding conversations. I also know I weaned myself off the bottle but I'd have to ask my Mom what age...

Never made a B, never made anything less than commended on a TAKS test (besides this last writing one. My handwriting has gotten too bad for them to read. :/), & I passed the SAT for the first time when I was in the seventh grade. I can't remember my score but I was in the 87th percentile & made a perfect on the essay portion. The "gifted" school label down here doesn't mean much but I got tagged in the first grade. I've held a 4.00000 for my first year & a half of high school in all honors classes, including two college social studies ones.

 

Personally, for me, it's really hard getting people to understand that KIDS CAN BE COGNITIVELY IMPAIRED WITHOUT MAKING BAD GRADES. Ugh,

 

Is there any general info on how P.A.N.D.A.S. kids develop physically? I know I developed fast in that regard as well.

Edited October 29, 2010 by EmersonAilidh

[nicklemama]

Our DS is gifted. We had him tested last fall as part of a psychological evaluation when all this started and we were searching for answers.

 

Cindy

[momcap]

I was thinking about this thread this afternoon. The bright kids have bright parents who were able to figure out the PANDAS diagnosis often with little or no medical help - sometimes even with medical interference. These parents are online searching for answers and options. Meanwhile I can't help but think there must be children of all levels of intelligence with PANDAS whose parents are accepting the advice of their doctors (as I did for almost 4 years). So these kids are being misdiagnosed and mislabeled and filed away into the world of mental illness and no one stops to question why. It scares me and makes me angry. That was our situation for 4 years, and as much as I would love to take credit for figuring this out on my own, it all came down to a suggestion from a friend to look at strep. But I'll still take the credit for being able to act on that suggestion with non-stop research and tenacity when it came to convincing doctors. Just thinking out loud...

[EmersonAilidh]

I was thinking about this thread this afternoon. The bright kids have bright parents who were able to figure out the PANDAS diagnosis often with little or no medical help - sometimes even with medical interference. These parents are online searching for answers and options. Meanwhile I can't help but think there must be children of all levels of intelligence with PANDAS whose parents are accepting the advice of their doctors (as I did for almost 4 years). So these kids are being misdiagnosed and mislabeled and filed away into the world of mental illness and no one stops to question why. It scares me and makes me angry. That was our situation for 4 years, and as much as I would love to take credit for figuring this out on my own, it all came down to a suggestion from a friend to look at strep. But I'll still take the credit for being able to act on that suggestion with non-stop research and tenacity when it came to convincing doctors. Just thinking out loud...

 

Not all of us have active parents. :/ Even after dx.

[kferricks]

While none of my kids have ever been tested, they all excelled in school. My oldest is a mathamatical genius, my oldest DD was 8yrs old correcting everyones grammer... did'nt help in the friend department. (I do suspect that she may have also had PANDAS, she was a rager; but she did most of that quietly.) My 10yr DD who I'm almost positive has PANDAS had mostly A s' and an occasional B. She also excells in math and science.

[bronxmom2]

I have two boards I check compulsively... this board and the Davidson gifted board.

(Where lots of the kids seem to have many of the same issues.)

(It's worth checking out.)

 

My son is actually a "Davidson Young Scholar" meaning he scored >99.9 on both IQ and achievement testing.

 

I am lucky enough to have two sets of scores, one from age 4 when (believe it or not) many many children in New York City are given the WPPSI in pursuit of a kindergarten seat, At age 4 my son scored >99.9.

 

I had him tested again at age 6, when he had apparently lost his mind and I had not yet heard of PANDAS. All ###### was breaking lose. In fact, the achievement testing had to be suspended one day because he suddenly spiked a super-high fever and had to go to the ER with ...STREP. Interestingly, the tester noted that in the hour right before the fever spiked and the actual strep struck, ds suddenly started to perform much better, became more focused, calmer and more reasonable. It's right there in his psych eval! He described the "clouds parting."

 

The testing at age 6, right in the middle of a huge exacerbation, was still >99.9.

 

I am so glad to know this, because... I don't know how to say this... I will not give up on him. I am homeschooling him now, he cannot write or do mathematical computations like so many of our kids (In fact the other day he finally wrote a whole paragraph and I was THRILLED to see the margin drift that EAMom has discussed... until he wrote that paragraph I had never seen enough output to know if he had the margin drift or not) but I am still holding him accountable because I know his intelligence.

 

I believe our childrens' intelligence will remain intact. I have to believe that. It will not be an ordinary route, but perhaps they will be stronger and smarter in the end (like Emerson) for having to invent their own course. All I know is I have to "believe" in my son's intelligence, and in fact I am somewhat obsessed with it.

Edited October 30, 2010 by bronxmom2

[EmersonAilidh]

I have two boards I check compulsively... this board and the Davidson gifted board.

(Where lots of the kids seem to have many of the same issues.)

(It's worth checking out.)

 

My son is actually a "Davidson Young Scholar" meaning he scored >99.9 on both IQ and achievement testing.

 

I am lucky enough to have two sets of scores, one from age 4 when (believe it or not) many many children are given the WPPSI in pursuit of a kindergarten seat, At age 4 my son scored >99.9.

 

I had him tested again at age 6, when he had apparently lost his mind and I had not yet heard of PANDAS. All ###### was breaking lose. In fact, the achievement testing had to be suspended one day because he suddenly spiked a super-high fever and had to go to the ER with ...STREP. Interestingly, the tester noted that in the hour right before the fever spiked and the actual strep struck, ds suddenly started to perform much better, became more focused, calmer and more reasonable. It's right there in his psych eval! He described the "clouds parting."

 

The testing at age 6, right in the middle of a huge exacerbation, was still >99.9.

 

I am so glad to know this, because... I don't know how to say this... I will not give up on him. I am homeschooling him now, he cannot write or do mathematical computations like so many of our kids (In fact the other day he finally wrote a whole paragraph and I was THRILLED to see the margin drift that EAMom has discussed... until he wrote that paragraph I had never seen enough output to know if he had the margin drift or not) but I am still holding him accountable because I know his intelligence.

 

I believe our childrens' intelligence will remain intact. I have to believe that. It will not be an ordinary route, but perhaps they will be stronger and smarter in the end (like Emerson) for having to invent their own course. All I know is I have to "believe" in my son's intelligence, and in fact I am somewhat obsessed with it.

 

Never give up hope!!! What is this margin drift??

[SarahJane]

I was thinking about this thread this afternoon. The bright kids have bright parents who were able to figure out the PANDAS diagnosis often with little or no medical help - sometimes even with medical interference. These parents are online searching for answers and options. Meanwhile I can't help but think there must be children of all levels of intelligence with PANDAS whose parents are accepting the advice of their doctors (as I did for almost 4 years). So these kids are being misdiagnosed and mislabeled and filed away into the world of mental illness and no one stops to question why. It scares me and makes me angry. That was our situation for 4 years, and as much as I would love to take credit for figuring this out on my own, it all came down to a suggestion from a friend to look at strep. But I'll still take the credit for being able to act on that suggestion with non-stop research and tenacity when it came to convincing doctors. Just thinking out loud...

 

 

This is what makes me so angry as well. That schools are quick to judge a kid who act out and turn them into a behavior problem despite it being a major change in their personality. And if there has ever been a question about development, doctors will quickly go back to that despite those issues being far behind the child. And doctors and teachers do expect you to just go along with whatever they say. Are surprised when you don't. And I feel so badly for the kids without advocacy, as much as I feel my advocacy was inadequate as I didn't push as hard as I probably should have with our school or doctors. But this takes a toll on you as a parent too...I still can't drive by his old school without a bit of panic. And there's a shock when you show a doctor something and they don't believe you. I'm a smart lady and usually a rational/objective person...opinionated but rational/objective, but if you want me totally irrational/subjective then have something involve my kid. I've never felt this out of control...ever. And the shock of having a doctor tell you to your face that it's not something when you have read everything you can find on it and can see it and can show it and are living it...well...I'm sure I don't need to say anything else about that. Those of you who haven't lost time trying to get the dx are very lucky.

 

Our ds was gifted, & started gifted classes just at the time his PANDAS symptoms flared last Feb. IF he hadn't been a top kindergarten student with no drop in his academics, he would have been relegated to a certain category due to his behaviors. And I say his academics didn't suffer, BUT he wasn't working at the level he could have been working at since he was mostly doing K work & clearly could have been doing higher grade work. And once he started getting bad marks in his behavior categories during the 2nd half of the year, he no longer got any stars for "exceeds expectations" but only got checkmarks for "progressing as expected." He was in K doing 3rd grade spelling & above grade reading & was still just getting "progressing as expected" in the 2nd half of the year. His first 2 grading periods were full of great marks. Seems silly to argue over a getting a star vs. a checkmark in K but a lot of it is subjective as not many grades are handed out. And he did great on most of his unit tests (some of the math units in the 2nd half of the year showed difficuly with material--likley due to PANDAS). AND there was a comprehensive test done at the end of the year, where they put on his report card that his score dropped from a 89% in 1st half (national avg was 76%) to a 68% in 2nd half (national avg was 87%) and they didn't even question it. I requested the printout scores & he actually had a 95% in the 2nd half of the year. But they put down the wrong score & didn't even double check it tho' it totally stands out on his report card. His teacher did at least acknowledge thru it all that it was a big change in his personality, BUT that didn't make it much better. And after four months of behavior issues in the last months of school, it was like the first 6 months of school when his behavior was good didn't even happen. I did keep waiting for the teacher to change her story & say he misbehaved the entire year, but they had a color system for behavior & it totally showed the shift in his behavior beginning in Feb (one month after he'd had strep...so I didn't have sudden onset...blah, blah, blah).

 

And I say all that because I'm angry. And I do believe that kids can likely have separate issues (like ADHD, OCD, TS, etc...) and not all may be PANDAS, but it's all just suspect to me...especially if 2 or more exist. And I do believe this affects so many more kids than we know...and maybe adults. And in some ways, I feel that all us parents doing the fighting now, will be able to teach others how to do it. If we aren't too tired. Or maybe someday, there won't be a fight & it will just be accepted & treatment will be a given.

 

I'm actually in touch with a leading psychologist for gifted kids. I plan to communicate with him about PANDAS (sorta why I asked this question). Many of the symptoms of this illness are what gifted kids are misdiagnosed with, which IMO cannot be a coincidence. Seems that there could be a link to a physicality of brain development as well as the infection. I don't know who has all the brain research on gifted kids, but I'd love to get them in a room with the PANDAS experts. I'd love to see the correlations.

[pandasstl]

Our son, 7, is gifted as well. Was reading at a 4th grade level at age 5 when tested by neurologist and was doing verbal negative integer problems in pre-K. All specialists just told us he was gifted/quirky. After 2 1/2 years of PANDAS, we now know what was going on. All cognitive skills still there-except the poor handwriting and some processing problems though as he gets better, I think this is more due to ADHD and is slowly disappearing. We are 9 weeks out of IVIG #1 with full strength augmentin.