How many PANDAS kids are gifted?

[EAMom]

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...

 

I completely agree. You either need to be a bright (and persistent) parent to come up with a PANDAS diagnosis... or at least be very lucky with "classic" onset and an on-the-ball PANDAS believing doc.

 

It's the bright inquiring parents that end up on this forum. These are the parents have resources (time, intelligence, persistence, some financial resources, decent health insurance) to pursue treatment with a PANDAS specialist.

 

And Emerson, well, to get where you are without strong parental support...you are just super-amazing. I can't imagine doing what you are doing at age 15.

[PhillyPA]

My pandas son is diagnosed as gifted. My other pandas son didn't get tested before pandas exploded but before his sickness his pediatrician told me that I should send him to a private school because he was so bright.

 

I was in the gifted program but I feel like a complete idiot that it took me 2.5 years to figure out Pandas. I berate myself constantly that I didn't figure it out sooner. So I am a gifted idiot.

[nicklemama]

The knowledge of my son's intelligence is what keeps me going when I am despairing over how much could he possibly be learning at school when he's got tics and worries and cloudy thoughts and distraction. How on earth could he possibly learn anything? He's in first grade this year and is reading on a third grade level. Math skills the same. He is doing the kindy work and does well. Right now, we have the luxury of knowing if he doesn't learn a thing until we get this under some kind of control, at least he won't be behind when 1st grade is over. The academics are just not that important to us in the moment.

 

We adopted our son, so I can take no credit for his gifts. He's not a genius, but he is working at a much higher level than most of his peers. He was not quirky and weird before all this started.

 

I don't know where we'd be if I worked. I've been a stay at home mom since we adopted him and right now, my life is helping my son. I don't have time for much else, except to come here or search the internet for information.

 

Emerson, I have a lot of admiration for you being so responsible for your own health and well being. Hang in there.

 

Cindy

[Johnsmom]

I'm sorry but this has always bugged me. My son is not gifted, he's average. I think he got pandas at a very young age, quite possibly an infant. How did he ever have the chance to really progress? I don't have a lot of brains either. I'm not trying to knock myself either. My husband is smart, but not brilliant.

I've hears that part of the criteria is this but I don't think it applies to everyone.

[thereishope]

It's not part of the criteria. It is something that some see as another thing they have in common and it refers to a phenotype Dr K lists on his website, but it's not part of the criteria. So, even if your child is not gifted, it does not in any way mean they may not be PANDAS or PITAND.

 

 

I'm sorry but this has always bugged me. My son is not gifted, he's average. I think he got pandas at a very young age, quite possibly an infant. How did he ever have the chance to really progress? I don't have a lot of brains either. I'm not trying to knock myself either. My husband is smart, but not brilliant.

I've hears that part of the criteria is this but I don't think it applies to everyone.

[Johnsmom]

Thank you Vickie! I know it's not part of the criteria. I guess I mis-spoke.

 

 

 

It's not part of the criteria. It is something that some see as another thing they have in common and it refers to a phenotype Dr K lists on his website, but it's not part of the criteria. So, even if your child is not gifted, it does not in any way mean they may not be PANDAS or PITAND.

 

 

I'm sorry but this has always bugged me. My son is not gifted, he's average. I think he got pandas at a very young age, quite possibly an infant. How did he ever have the chance to really progress? I don't have a lot of brains either. I'm not trying to knock myself either. My husband is smart, but not brilliant.

I've hears that part of the criteria is this but I don't think it applies to everyone.

[bronxmom2]

Let us know how your communication with the gifted psychologist goes. I have also consulted with one of these experts-- Edward Amend, who wrote the book Dual Diagnosis and Misdiagnosis of gifted kids.

 

He had worked with one other child with PANDAS and was interested. But I only had the one consult with him. I wonder if he's encountered any more.

 

If I recall, the theory he suggested was something to do with the tendency for two rare traits to appear together. Therefore PANDAS (rare) was statistically more likely to appear with another rare trait (extreme giftedness)than would appear in the general population.

 

But this doesn't quite resonate with me. I don't think PANDAS is actually rare.

 

More likely... the giftedness only plays a role in the likelihood of being diagnosed.

[SarahJane]

Yes Amend is the expert I'm talking about here...did our ds(6)'s IQ testing 2 years ago & saw us this past spring & wrote a report. So he's seen at least 2 PANDAS, but one stayed undx'd (my ds) until recently. So, my planned communication might not be anything new to him, but maybe will remind him to ask about strep. We'd actually switched to another psychologist who was a more available for our immediate crisis back in the spring since Amend travels extensively. I found our new doc just after I found PANDAS in May & he wasn't that familiar but knew it was tricky. But the symptoms subsided over the summer (maybe natural course of symptoms--4 or 5 month exacerbation with sawtooth) until ds got sick again. Then the mental symptoms are what alerted me to the strep dx'd in Sept (of course, still a struggle for the dx tho').

 

I got the book "Misdiagnosed" 2 years ago & was thrilled that one of the authors (Amend) had a practice in my city & made an appt. I think it's interesting that the symptoms of PANDAS reads like the table of contents from this book (Anxiety, ADHD, OCD, ODD, Bipolar, Depression, Eneuresis, Sleep Disorders, Writing Issues, Mathematics Issues, Sensory Issues, etc...). I actually called his office yesterday to get our records because I wanted to see the raw data from the spring questionnaires if I can get it. I know ODD & some rigidity in thinking (likely OCD) were issues that showed up...just wondering what else. We did think a lot of it was giftedness back then & reacting to his environment...in retrospect, much of it was the PANDAS too.

 

I don't think giftedness is particularly a trait of PANDAS either (didn't mean it that way). Just find it interesting that there seems to be so many cases where they coincide & wonder if it means anything (and it may not...bacteria are everywhere & we're all equally at risk to it). And I don't think PANDAS is a rare disorder either...just likely underdiagnosed. Maybe such an alphabet soup of symptoms as a presentation like many of us have is rare. But if you treat your child for strep and then a month later (or even as far as 6-9 months later per some of the experts) they start wetting the bed, have attention issues at school, and show some sensory issues then you may never connect it to strep/illness. And if they're 11 years old and they have intermittent issues for a year or two until puberty, then you are more likely to say it was a phase rather than search out PANDAS, and you might have gone on meds in the meantime. It's these missed cases that likely do help support the idea that there aren't long-term effects. It's the extreme cases that I think are so baffling as to why they aren't caught...a child with so many mental issues would seem to raise a red flag for PANDAS vs. anything else. (At least once you know it exists.)

[forjpj]

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 speaking for her or anything, but I believe that is how Dr. L feels about the situation also. It is the intelligent kids with the intelligent moms figuring this stuff out for themselves.

[Chemar]

I just wanted to throw something into the mix here, especially for any parents sitting on the sidelines of this discussion thinking "well, I feel my child is "gifted" and talented, but they are also exhibiting learning disabilities......."

 

Many kids with extra ordinary talents and abilities & IQs also can have LDs, especially when they are impacted with illness!

So "giftedness" does not exclude kids who also have LDs, or put another way, kids with LDs are not "un-gifted"

[PhillyPA]

I agree with Chemar. My older PANDAS son since getting pandas has severe learning disabilities. I don't even care that he is not learning a thing. I am just working on getting him better.

[MSmom]

I completely agree. My son is gifted with learning disabilities. It was very confusing for a while, until we found out about the LD. He functions MUCH better cognitively when he is feeling more physically well and when the PANDAS symptoms are milder. I think SOME (not all) of his diagnosed learning disabilities were actually from PANDAs. Daughter is gifted too, I'm sure, although she hasn't been tested, as she didn't exhibit any signs of LD. She was a model student, but then when her PANDAS hit HARD in 6th grade (she had actually had the symptoms on and off for several years), she presented like someone with severe ADD and also completely lost her short term memory to the point that she could not repeat what someone said immediately after they had said it.

 

I just wanted to throw something into the mix here, especially for any parents sitting on the sidelines of this discussion thinking "well, I feel my child is "gifted" and talented, but they are also exhibiting learning disabilities......."

 

Many kids with extra ordinary talents and abilities & IQs also can have LDs, especially when they are impacted with illness!

So "giftedness" does not exclude kids who also have LDs, or put another way, kids with LDs are not "un-gifted"

[bronxmom2]

Funny that we were talking about the same guy. It would be great if he would include PANDAS in the next edition of "Misdiagnosis."

[lynn2]

Another reason to try and get to this problem earlier in your child's life. I just got back from Parent-Teacher night at my DS' specialized high school. It took a lot of work, both on his part and on our part, for us to get in there and it is particularly upsetting that he is in major exacerbation right now, as the year starts. How to explain to teachers who are telling you not to worry because all freshmen struggle and they are all used to getting 90's and now they are with an class that is entirely made up of gifted students and they can't all expect to be the ones excelling? DS has been so full of OCD that he can't sit down to study until he has done all kinds of rituals, many of which I don't even know about. He can't concentrate in class, can't remember things I just reviewed with him...We have a 504 and have alerted guidance to the problem (bless them for being 100% there for us!) HDIVIG number 2 tomorrow.

 

DS has tested gifted on a number of occasions while trying to make sense of the symptoms and get accomodations. It is absolutely true that it depends on whether he is waxing or not. His short term memory, processing time, math skills, handwriting (and also organization, meaning his ability to make a chart that actually tracks across the page,etc.)have all taken hits on these tests when he is waxing. None of the tests have been of much practical use, although I did refer to them a few times when talking to the teachers.

[swim]

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.