shared traits of PANDAS children?

[bronxmom2]

Hi, I have two question for parents dealing with their kids' PANDAS:

 

-- when do you think PANDAS first affected your child?

For my child, I think it was just before 2 year. (At 6.5 he was just diagnosed.)

 

-- is your child unusually precocious? Especially, was he/she an early talker?

I have read that is the profile of PANDAS kids, which I find fascinating. My son spoke at 7months, and on recent IQ/achievement tests tested in the PG range... but in the mean time, he is flunking out of first grade.

 

Thanks! I am very curious about the shared traits of PANDAS children.

[AmySLP]

1. Looking back, I think my daughter probably had symtoms of PANDAS when she was 3 1/2, but as I posted in an earlier topic, my daughter had several strep infections prior to age 2, with the first at 7 weeks old!

 

2. My daughter was an earlier talker (two-three word phrases by 14-15 months) but I always chalked that up to me being a speech-language pathologist (however my second daughter is more typical in speech/language development). Also my daughter has cognitive testing last year (it is the procedure in NY for any child having evaluations for developmental concerns; she has sensory issues, which I realize now heighten with strep and are likely some PANDAS signs) Anyhow, she score about 120 (Test norms are 85-115 for average).

 

***I'm curious to see others responses, seems our children are somewhat similiar in these areas

 

 

Amy

[pmoreno]

well, I have to burst that bubble. Gaby, along with her twin had a speech and language delay which prompted me to have them evaluated at about 18 months and they received speech therapy. Gaby's was a little bit worse than her twin's.

[peglem]

Well, even with loads of speech therapy my daughter is still nonverbal at age 14. (Apraxia of speech) I do suspect she had strep infections even in very early infancy...was not tested until age 10! I wonder how much of her troubles are the result of untreated strep early in life. Maybe the reason why strep is so rare in infants is because nobody looks for it. I see no reason why infants would have some special antistrep magic shield...doesn't make sense! Especially when you consider the literature on the dangers of neonates contracting strepB from the birth canal! And to conclude my rant: Isn't it frustrating that doctors will accept this completely unproven theory (no gabhs in infants), or really, univestigated theory, but something that has been investigated (although not completely) like PANDAS, they dismiss outright?

[browneyesmom]

Yes, my daughter was an early talker and highly verbal. Her first sentence was at 9 months. Her kindergarten teacher told me at parent-teacher conference that she had the largest vocabulary by far - in the class. That particular class included a total of 8 kids in the advanced reading program (my daughter included), one of which whose mom was a reading specialist. He and several others, were very bright.

 

She's always been an honor student and in advanced classes - has remained in the pull-out gifted reading class all through elementary school and has been in and out of the pull-out gifted math class - currently in one that moves faster, but this year, as you might imagine, it's quite a struggle. This year (4th grade), she is struggling to keep up with classes and sometimes, to pass tests.

[pmoreno]

so in conclusion, I would say that PANDAS can affect any child (whether bright and precocious early talkers or those with language delays, etc)

[michele]

Hi.

My son was affected by his first strep infection at 12 months old. He was an early talker. I never realized he was so delayed in motor skills until he was four. After the first strep episode he had tics and obsessive behaviors and emotional issues following every sickness and fever. He was diagnosed at age six with tourettes and ADHD.

 

He is smart and has a great memory. He learns music really fast and can memorize dates and remember things really well. However, he is struggling with most Math concepts and writing and spelling. I think he has dysgraphia because he struggles to get his ideas onto paper. Also he has low tone and fine motor delays so writing and drawing and cutting is a problem. He is delayed in visual motor perception and struggles with copying shapes and spatial perception. Anyone here know of brain gym activities? We are trying to get him to strengthen those different areas of the brain. Like doing the infinity sign and crossing over midline. He still doesn't ride a bike at 7. He also has sensory issues with self regulation.

 

I am working really hard with the school to get them to understand this is neurological and not behavioral for us. I want them to give him academic help in the areas he is weak in under IDEA, under OHI.

Hi, I have two question for parents dealing with their kids' PANDAS:

 

-- when do you think PANDAS first affected your child?

For my child, I think it was just before 2 year. (At 6.5 he was just diagnosed.)

 

-- is your child unusually precocious? Especially, was he/she an early talker?

I have read that is the profile of PANDAS kids, which I find fascinating. My son spoke at 7months, and on recent IQ/achievement tests tested in the PG range... but in the mean time, he is flunking out of first grade.

 

Thanks! I am very curious about the shared traits of PANDAS children.

[EAMom]

Our dd was pretty normal (maybe a little early) with talking. Certainly nothing to be concerned about. At 23 mo. I remember she said "I want a baby sister"...so she was definitely speaking complete sentences by then if not earlier. However, currently she is in speech therapy at school, helping her with pronouncing her "r's" and things like that. That said, I don't know if she has a more complex language processing issue that the cursory school eval didn't uncover.

 

Our dd is "unique" academically...she is a terrible speller (the worst in her class) and has terrible handwriting (also, the worst in her class) and is really bad at memorizing math facts. She also initially had a hard time learning to read (1st grade) b/c of poor phonemic awareness. However, now (3rd grade) she is a great reader (she sight reads). At her recent eye evaluation her overall reading rate (speed) was tested at 306 words per minute (above high school level) with 100% comprehension. Testing this fall showed her reading comprehension to be above the 99th percentile. She also does fine with math word problems (algebra/logic) despite having trouble memorizing the basic math facts (addition, multiplication).

 

Re reading: I did pretty much always (when available) have the closed caption on when she was watching TV. I don't know if this helped her reading. We've also always read to her a lot and she has always loved that (even as an infant).

 

Re: her handwriting: I don't remember dd having terrible (for her age) handwriting when she was in Kindergarten. It's almost like her writing slowly got worse/stayed the same, instead of improving like most kids do with age. I think her handwriting is even worse this month than it has been. She has been diagnosed with fine motor delay (by OT) and has trouble with visual spatial integration (important for writing/copying). I don't know if this is from PANDAS...

 

Re: IQ One IQ test on her was 142 (Nov 2007--pre big PANDAS episode, administered by school psychologist) and another test (a year later Nov 2008--5 mo. post big episode, during minor flare) was 120. I didn't think IQ tests were supposed to vary that much in an individual? I don't know what effect the PANDAS had or if the 1st test was just artificially high for some reason. Also, they were different tests (Wisc vs. Stanford binet) so I don't know if that made a difference. I guess I am hoping it was an quirk of testing that lead to the 2 different scores (22 point difference) and not the PANDAS. I'm curous if anyone else had IQ scores both pre and post a major PANDAS episode?

 

Dd finally learned to ride a bike last year (7.5, almost 8 years old) last spring when she got serotonin syndrome (something good did come from all that Lexapro!). I think she finally had enough serotonin in her system to get over her anxiety about riding w/out training wheels.

[bronxmom2]

Hi again EAMom,

My son (age6) has a similar pattern of academic strengths/weaknesses. His writing and math computation skills are very poor (by far the poorest in his class), but reading and reasoning skills are exceptionally strong-- probably the strongest in his class. He recently took the WIAT achievement test, and scored a grade equivalent >12.9 in reading, language skills, and math reasoning (>99.9% in all these) , but pretty much right on grade level (1st grade) for writing and math computation. Which must be frustrating! His handwriting, too, did not stand out as terribly bad in kindergarten but has not improved like the other kids'. Now there is an additional anxiety about writing anything-- he gets genuinely phobic when asked to write anything. In fact he is so anxious about school in general, and so poorly served by the curriculum, that I'm thinking of homeschooling him. (Plus I think there is a strep carrier in the class.)

 

In particular his reading speed is amazing-- recently he was reading a Harry Potter book, and I was reading over his shoulder on the subway-- and he could read faster than me.

 

My son took the WISC-IV IQ test a few months ago in the middle of our first bad PANDAS episode (the testing was being done at the insistence of his school because of his problems) (in fact he stumbled out of the WISC with a 103 fever, finally sick with strep after 2 months of increasingly bizarre behavior)-- anyway he scored a 145, which is exactly the same score he'd gotten two years earlier (for kindergarten admission in NYC)-- so the PANDAS had not changed his IQ score. I do think the Stanford Binet is a harder test for our kids-- zeroes right in on their weaknesses-- much more mathy. So I think that's probably the reason for your daughter's lower score on the SB. My son did not score as high on the SB either.

[bronxmom2]

so in conclusion, I would say that PANDAS can affect any child (whether bright and precocious early talkers or those with language delays, etc)

 

 

Does it seem to be one extreme or the other?

[Indigo]

My dd walked and talked early, and never slept from the day she was born. I think the PANDAS started with her when she was 2 and she was in the hospital for Rotavirus. She was never the same after that, although I have no idea what that has to do with strep. She was on antibiotics a couple of times around that time of her life, but never had a strep diagnosis.

[EAMom]

Hi Bronxmom,

 

yes, the writing thing is so stressful for my dd. And, as they go up in grades they just have to write more and more. I don't know if it soley PANDAS in her case. I suspect that PANDAS is at least a contributing factor. She has a tremor which she didn't have before last year. Recently she has been diagnosed with a fine motor delay and does poorly on tests where she has to integrate fine motor and spatial planning. Her writing is a big mess, her columns all all over the place, she has big problems with margins, horrible spelling (probably 1st grade level)...

 

We're starting OT for her writing next week. We were supposed to start a couple of months ago but the original OT we were scheduled with got sick.

 

You might find this website interesting re: handwriting http://www.diannecraft.org/article-003.htm My dd does pretty much all the "symtpoms of stress in the writing system" her list! There are some interesting suggestions on the site as well. (However, I don't know about her theory of eye/handedness...dd, who has such trouble writing, is both right eyed and right handed. I'm left eyed and right handed and didn't have any learning to write as a child.)

[michele]

Great link. These are the kinds of things brain gym does http://esl.about.com/od/englishlessonplans/a/braingym.htm and PACE programs. This is the kind of activities our OT is trying to incorporate with the figure 8 movements and fluency activities to cross the midline. Interesting how all of our kids are struggling with handwriting, and writing, and spelling and math. Also the visual perception delays. Have any of you had the BERRY VMI test done or the motor tests? My son scores two and a half years behind on them. He still draws like a preschooler with no neck and arms coming from the head. This really shows in his artwork. Definatly an area of concern for us. Also have any of you considered dysgraphia is the source of the writing problems? http://learningdisabilities.about.com/od/l.../dysgraphia.htm

 

Hi Bronxmom,

 

yes, the writing thing is so stressful for my dd. And, as they go up in grades they just have to write more and more. I don't know if it soley PANDAS in her case. I suspect that PANDAS is at least a contributing factor. She has a tremor which she didn't have before last year. Recently she has been diagnosed with a fine motor delay and does poorly on tests where she has to integrate fine motor and spatial planning. Her writing is a big mess, her columns all all over the place, she has big problems with margins, horrible spelling (probably 1st grade level)...

 

We're starting OT for her writing next week. We were supposed to start a couple of months ago but the original OT we were scheduled with got sick.

 

You might find this website interesting re: handwriting http://www.diannecraft.org/article-003.htm My dd does pretty much all the "symtpoms of stress in the writing system" her list! There are some interesting suggestions on the site as well. (However, I don't know about her theory of eye/handedness...dd, who has such trouble writing, is both right eyed and right handed. I'm left eyed and right handed and didn't have any learning to write as a child.)

[michele]

Great link. These are the kinds of things brain gym does http://esl.about.com/od/englishlessonplans/a/braingym.htm and PACE programs. This is the kind of activities our OT is trying to incorporate with the figure 8 movements and fluency activities to cross the midline. Interesting how all of our kids are struggling with handwriting, and writing, and spelling and math. Also the visual perception delays and the spacing trouble. Have any of you had the BERRY VMI test done or the motor tests? My son scores two and a half years behind on them. He still draws like a preschooler with no neck and arms coming from the head. This really shows in his artwork. Definatly an area of concern for us. Also have any of you considered dysgraphia is the source of the writing problems? http://learningdisabilities.about.com/od/l.../dysgraphia.htm

 

Hi Bronxmom,

 

yes, the writing thing is so stressful for my dd. And, as they go up in grades they just have to write more and more. I don't know if it soley PANDAS in her case. I suspect that PANDAS is at least a contributing factor. She has a tremor which she didn't have before last year. Recently she has been diagnosed with a fine motor delay and does poorly on tests where she has to integrate fine motor and spatial planning. Her writing is a big mess, her columns all all over the place, she has big problems with margins, horrible spelling (probably 1st grade level)...

 

We're starting OT for her writing next week. We were supposed to start a couple of months ago but the original OT we were scheduled with got sick.

 

You might find this website interesting re: handwriting http://www.diannecraft.org/article-003.htm My dd does pretty much all the "symtpoms of stress in the writing system" her list! There are some interesting suggestions on the site as well. (However, I don't know about her theory of eye/handedness...dd, who has such trouble writing, is both right eyed and right handed. I'm left eyed and right handed and didn't have any learning to write as a child.)

[bronxmom2]

Hi,

Those are great links, thanks.

My son also has everything on that "stress in the writing system" checklist, I'm going to read it more carefully. I also think he does have dysgraphia of some type-- it seems like a very complicated disorder, though, lots of different problems could be contributing to the problem. My son's handwriting is a mess, true, and he does mix up letters and ignore capitalization rules, but the real problem seems to be anxiety provoked by an empty page. He simply panics.

 

I think the school finally understands this. I had a meeting yesterday with the teacher and guidance counselor and told them I was going to pull him out and homeschool him because their type of curriculum was contributing to his anxiety and making him hate learning-- lots of worksheets and acceleration in all the areas where he struggles. (It's a gifted school.) They were completely taken aback and talked me into keeping him there. So we are going to try an onslaught of collective positivity.

 

His artwork is also pretty terrible, but yesterday he made an extremely impressive model ship out of construction paper and scotch tape.

 

Does anyone know if these academic problems improve with IVIG or over time if the PANDAS if brought under control?