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Visual/perceptual skills all over the map?


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I'm curious if it is a common trait of PANDAS to have extreme (either high or low or both) visual/perceptual skills in the PANDAS child or it is just mine.

 

I don't know the professional jargon for many of these, so bare with me.

 

My dd10 has exceptional "I-Spy" skills. You drop something small in the grass, she can find it. She always spots the critters in the woods that are so camouflaged to everyone else. She spots the deer that is about to dart out in the road 15-30 sec before anybody else can visually locate what she's talking about. Birds nests, money on the ground, that kind of stuff she ALWAYS spots first. She could draw three dimension objects at age 3.

 

Directionality-bottom 1% in distinguishing left and right (geez-only 2 choices, must not be lucky either!) Tracking left to right-awful, skips words, the little function words, looses her place all the time! Her reading fluency was horrible last year regardless of material difficulty-she read more fluently in first grade than she did in 4th. BUT: give her a list of words to read top to bottom, she can read above grade level.

 

Has written sentences right to left and spelled in reverse; not intentionally. Letter reversals, in cursive too; always left/right (b/d) reversals, never top/bottom (n/u). I can go back in time and track dd10's functionality in time by all the ups and downs in her handwriting; it's nothing short of freaky.

 

An aside: This goes back to some of the other posts, MKUR perhaps; this extreme scatter of skills doesn't make sense. I've been so frustrated over the years at the medical community that wants to compartmentalize everything and not look in totality and ask WHY? This doesn't make sense?

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Hmmmm very interesting! I hope lots of folks will weigh in on this because I would love to see what they say. At first glance, this strikes me as midline crossing issues / bilateral skills issues. I am wondering about things like:

 

1. Scissor cutting

2. sports with two hands on a tool where you have to twist your body - like hockey, baseball, golf, etc.

3. Playing instruments

 

I am wondering if those are smooth or problemmatic and if the skill level changes when she has an exacerbation.

 

Also - have you ever worked with a developmental optometrist?

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Hmmmm very interesting! I hope lots of folks will weigh in on this because I would love to see what they say. At first glance, this strikes me as midline crossing issues / bilateral skills issues. I am wondering about things like:

 

1. Scissor cutting

2. sports with two hands on a tool where you have to twist your body - like hockey, baseball, golf, etc.

3. Playing instruments

 

I am wondering if those are smooth or problemmatic and if the skill level changes when she has an exacerbation.

 

Also - have you ever worked with a developmental optometrist?

 

Mixed bag

-fine with scissors

-only played softball. She won placing ribbons during Skills Day for hitting, throwing at a target and running, but was actually awful at playing in a game bcs she couldn't pay attention to follow what was going on and integrate those individual skills in a meaningful way, i.e. the "thinking" part of the game got in the way, she just functioned on automatic pilot.

-she had to quit piano because she could not track the music at all. She did well in ORFF with triangles and a two stick xylophone where she memorized rather than read music.

 

She did attend vision therapy with optometrists at a PA College of Optometry; that's where we found out she was in the 1%ile for L/R. It wasn't very helpful.

Yes, her skills would wax and wane, but over time just deteriorated overall; that baseline kept moving in the wrong direction.

 

Interestingly, since IVIG, she has improved her ability to coordinate and integrate multi-skill tasks. I've noticed she's much more interested in her DS lately because she can cruise through levels she used to need friends to help her pass before. She actually said "the pandas must be leaving my brain now bcs I could never get this far before!" I just smile and think she must be imagining these little panda bears running around in her head :lol:

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I think ds is fine left/right. And large motor skills are exceptional - he plays baseball, and other sports very well. The only thing of note in that area is that he is almost ambidextros (sp?). He didn't have a hand selection until after two.I kept putting things in his right hand so he would pick one as I recall. He is right handed. He is "goofy-footed" on snowboard and skateborad, and is left footed in soccer. He can switch hit in baseball.

 

His fine motor skills are poor. He doesn't have an interest. So, its hard to tell how much of it is pandas. Handwrtiting, drawing - does as little as possible. I can't say that I can tell they are dramatically improved when not in exacerbation...they're pretty bad all the time.According to recent assessment in bottom 2% on a test called "processing speed" where he had to match a symbol to a number and copy the symbol (they were fairly complex, not like a tirangle or circle). This is measureing where the two skills come togehter - spatial thinging and fine motor. He is above average on conceptual thinging and I know he thinks about things in 3-D well (far beyond his years) but something about having to draw pictures, symbols or even numbers to dexcribe visual stuff stuff he cannot do. He can do it verbally very well.

 

I CAN tell you that the first 3 months when he got put on antibiotics he got an interest in drawing complex cartoon figures (mostly Sonic the Hedgehog) and he blew me a way. He was drawing like never before - he would spend hours focused on drawing, and they were very good. that went away over past few months.

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Hmmmm very interesting! I hope lots of folks will weigh in on this because I would love to see what they say. At first glance, this strikes me as midline crossing issues / bilateral skills issues. I am wondering about things like:

 

1. Scissor cutting

2. sports with two hands on a tool where you have to twist your body - like hockey, baseball, golf, etc.

3. Playing instruments

 

I am wondering if those are smooth or problemmatic and if the skill level changes when she has an exacerbation.

 

Also - have you ever worked with a developmental optometrist?

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Hmmmm very interesting! I hope lots of folks will weigh in on this because I would love to see what they say. At first glance, this strikes me as midline crossing issues / bilateral skills issues. I am wondering about things like:

 

1. Scissor cutting

2. sports with two hands on a tool where you have to twist your body - like hockey, baseball, golf, etc.

3. Playing instruments

 

I am wondering if those are smooth or problemmatic and if the skill level changes when she has an exacerbation.

 

Also - have you ever worked with a developmental optometrist?

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Although my daughter does not seem to have visual/perceptual problems, I believe this was anticipated when the developmental optometrist dx. her with Convergence Insufficiency Disorder (this is essentually a focusing problem where one eye darts off in the opposite direction when the object being focused on gets closer to the nose) the summer that she had strep we could not erradicate and eventually lead to PANDAS. He felt that it's something to watch, no intervention b/c she was young. My husband took her back this year prior to Kindergarten & it was less so. (in fact the doctor told my husband he had more problems that my 5 y/o daughter & he's functioned just fine with vision-so maybe you learn to compensate for this over the years). Her reading is above age level and she is a very fluent reader. The doctor felt that she may have difficulty as a result of this when the print gets smaller. Anyone else ever heard of this disorder?

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Dr. Latimer said at the conference on Friday not to worry about academic problems (another mom asked about her child's huge drop in IQ.) She said that with treatment the problems will typically resolve! Here's what I would suggest (as an OT, too.) First, get the PANDAS treated. Give it sufficient time to work. Then have an OT in your area evaluate for other problems that may be contributing. Several parents at the conference kept saying over and over again, that treating the problem (e.g. ERP, OT, ST, etc.) DOES NOT WORK if they are being caused by PANDAS, until you treat the PANDAS.

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Mixed bag

-fine with scissors

-only played softball. She won placing ribbons during Skills Day for hitting, throwing at a target and running, but was actually awful at playing in a game bcs she couldn't pay attention to follow what was going on and integrate those individual skills in a meaningful way, i.e. the "thinking" part of the game got in the way, she just functioned on automatic pilot.

-she had to quit piano because she could not track the music at all. She did well in ORFF with triangles and a two stick xylophone where she memorized rather than read music.

 

She did attend vision therapy with optometrists at a PA College of Optometry; that's where we found out she was in the 1%ile for L/R. It wasn't very helpful.

Yes, her skills would wax and wane, but over time just deteriorated overall; that baseline kept moving in the wrong direction.

 

Interestingly, since IVIG, she has improved her ability to coordinate and integrate multi-skill tasks. I've noticed she's much more interested in her DS lately because she can cruise through levels she used to need friends to help her pass before. She actually said "the pandas must be leaving my brain now bcs I could never get this far before!" I just smile and think she must be imagining these little panda bears running around in her head :lol:

 

It sounds like her horizontal movement ssue is limited to her eyes, if she is able to cross midline to hit a ball with a bat and such. It also sounds like IVIG is helping with her eyes since she is doing better with videogame. I am assuming the testing was done pre-IVIG? Could you have her re-tested? If you do and there is marked improvement, that would be an objective measure of improvement following IVIG (since you did not do anything to treat the visual tracking directly, it would seem that IVIG would be the only explanation).

 

IT also sounds like this videogame may be good therapy if it involves horizontal tracking.

 

If this continues to be a problem in school - or if it pops up again as a problem - you could also try taking a piece of heavy paper (oaktag) and cutting a "window" out of it with an exacto knife. The window would be a rectangle that is the same size as one line of the reading. That would block out all the other words and may help her to follow along so that if her eyes move vertically (which sounds like the stronger movement), she would not start reading words in another line. She would just move the paper down as she reads each line.

 

Let us know if you take her back for retesting. That would be very interesting!

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We are currently homeschooling and had my ds(10) take some tests in the Spring just to see how he was doing. He will be starting a small private school in the fall and we were curious where he would fall grade-wise. The scores were really low in reading (high in vocabulary & strategies though) and low in math (no surprise) but he scored higher than average in Social Science (he loves maps and has a great knack for directions). He had just gone back on an antibiotic when the testing was done. As an aside, he has a great drawing abillity but his handwriting and spelling are really a struggle.

 

I know he's smarter than these tests show and fortunately his new school feels that testing isn't everything and they are confident that they can help him. The student/teacher ration will be 6-1 so he should be ok but I still worry. I hope it's true that once he is treated for PANDAS, he will start to improve academically too.

 

Dr. Latimer said at the conference on Friday not to worry about academic problems (another mom asked about her child's huge drop in IQ.) She said that with treatment the problems will typically resolve! Here's what I would suggest (as an OT, too.) First, get the PANDAS treated. Give it sufficient time to work. Then have an OT in your area evaluate for other problems that may be contributing. Several parents at the conference kept saying over and over again, that treating the problem (e.g. ERP, OT, ST, etc.) DOES NOT WORK if they are being caused by PANDAS, until you treat the PANDAS.

Edited by justinekno
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Dr. Latimer said at the conference on Friday not to worry about academic problems (another mom asked about her child's huge drop in IQ.) She said that with treatment the problems will typically resolve! Here's what I would suggest (as an OT, too.) First, get the PANDAS treated. Give it sufficient time to work. Then have an OT in your area evaluate for other problems that may be contributing. Several parents at the conference kept saying over and over again, that treating the problem (e.g. ERP, OT, ST, etc.) DOES NOT WORK if they are being caused by PANDAS, until you treat the PANDAS.

 

As someone whose child ran around improperly dx'd for her entire childhood, I would have to agree. We saw no substantial benefit from vision therapy, CBT, hypnosis, reading support or even speech therapy for a slight lisp (and I'm an SLP, ouch!)

(My dd's IQ dropped 2 standard deviations on one measurement!!)

 

It is reassuring to hear the learning issues will resolve, but I'm sure patience is in order, at least in our case. DD10 is 7 weeks post ivig, and we have seen many substantial improvements, but the learning (reading fluency, math and simple ability to sustain attention that requires mental effort) appears to be her "lingerer" at this point; not OCD or hyperactivity or behavioral regression, those are all 80-90% resolved at this point. And, yes, I'm very grateful!!!!

 

Can others chime in as to how long it took for the learning-type issues to resolve post successful treatment?

Edited by JAG10
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Can others chime in as to how long it took for the learning-type issues to resolve post successful treatment?

 

My dd's IQ dropped 22 points (tested 2nd grade b-4 big PANDAS explosion and again in 3rd grade when in semi-remission on Azith.) between 2nd/3rd grade. I don't know that was the difference in the test type? Or PANDAS? BTW I suspect her first PANDAS episode was at age 4 (mild ocd, urinary freq) or even earlier.

 

One easily identifiable problem that showed up after PANDAS-explosion in 2nd grade was "margin drift". In 1st/early 2nd grade her margins were neatly justified on the left. (I will try to post a picture if I can). After PANDAS, words would start at the left but then creep right with each sucessive line. (Worked with OT briefly on this, also had extensive eye/optometry evaluation. BTW AmySLP, she was originally suspected of having convergence insuff. but didn't once tested.) Handwriting was never great, but did get worse with PANDAS. Spelling has always been horrible. SHe has tons of trouble COPYING (from the board, or even copying a word on a paper in front of her). Math problems were mainly memorization/computation, algebreic reasoning was okay. In speech therapy at school. Reading is great (with wonderful comprehension/speed)...but did initially have trouble learning to read in K/1st grade (poor phonemic awareness, had trouble sounding out words, would look at the first and last letter and guess).

 

The margin drift resolved a couple (?) of months after IVIG #1 (IVIG #1 was just b-4 4th grade). Handwriting was getting better during 4th grade, but was inconsistent. Better on some days than others. Math/Spelling never became great...maybe a sign of "incomplete healing" (IVIG #2 needed at the end of 4th grade due to return of PANDAS symptoms after FEB. fever). We're almost 2mo. post IVIG #2...I'm hoping for more healing, we're definitely not 100% (academically or otherwise). I'm thinking it takes time, and perhaps some "relearning"?

Edited by EAMom
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Can others chime in as to how long it took for the learning-type issues to resolve post successful treatment?

 

My dd's IQ dropped 22 points (tested 2nd grade b-4 big PANDAS explosion and again in 3rd grade when in semi-remission on Azith.) between 2nd/3rd grade. I don't know that was the difference in the test type? Or PANDAS? BTW I suspect her first PANDAS episode was at age 4 (mild ocd, urinary freq) or even earlier.

 

One easily identifiable problem that showed up after PANDAS-explosion in 2nd grade was "margin drift". In 1st/early 2nd grade her margins were neatly justified on the left. (I will try to post a picture if I can). After PANDAS, words would start at the left but then creep right with each sucessive line. (Worked with OT briefly on this, also had extensive eye/optometry evaluation. BTW AmySLP, she was originally suspected of having convergence insuff. but didn't once tested.) Handwriting was never great, but did get worse with PANDAS. Spelling has always been horrible. SHe has tons of trouble COPYING (from the board, or even copying a word on a paper in front of her). Math problems were mainly memorization/computation, algebreic reasoning was okay. In speech therapy at school. Reading is great (with wonderful comprehension/speed)...but did initially have trouble learning to read in K/1st grade (poor phonemic awareness, had trouble sounding out words, would look at the first and last letter and guess).

 

The margin drift resolved a couple (?) of months after IVIG #1 (IVIG #1 was just b-4 4th grade). Handwriting was getting better during 4th grade, but was inconsistent. Better on some days than others. Math/Spelling never became great...maybe a sign of "incomplete healing" (IVIG #2 needed at the end of 4th grade due to return of PANDAS symptoms after FEB. fever). We're almost 2mo. post IVIG #2...I'm hoping for more healing, we're definitely not 100% (academically or otherwise). I'm thinking it takes time, and perhaps some "relearning"?

 

dd10 is also going into 5th (Lord, have mercy on me!)

-Yes to the margin drift (one OT friend told me that is a "cognitive" sign)

-Mine was dx'd w/convergence ex-sufficiency, but that is line of vision, she never looked cross-eyed

-Ditto to the copying issues

-Ditto to the spelling and I'd throw in punctuation/writing mechanics in that group too.

-Ditto to the high mathematical reasoning, shaky computation

-Pictorial analogies 99%ile, written verbal analogies 78%ile on Terra Novas

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Can others chime in as to how long it took for the learning-type issues to resolve post successful treatment?

 

My dd's IQ dropped 22 points (tested 2nd grade b-4 big PANDAS explosion and again in 3rd grade when in semi-remission on Azith.) between 2nd/3rd grade. I don't know that was the difference in the test type? Or PANDAS? BTW I suspect her first PANDAS episode was at age 4 (mild ocd, urinary freq) or even earlier.

 

One easily identifiable problem that showed up after PANDAS-explosion in 2nd grade was "margin drift". In 1st/early 2nd grade her margins were neatly justified on the left. (I will try to post a picture if I can). After PANDAS, words would start at the left but then creep right with each sucessive line. (Worked with OT briefly on this, also had extensive eye/optometry evaluation. BTW AmySLP, she was originally suspected of having convergence insuff. but didn't once tested.) Handwriting was never great, but did get worse with PANDAS. Spelling has always been horrible. SHe has tons of trouble COPYING (from the board, or even copying a word on a paper in front of her). Math problems were mainly memorization/computation, algebreic reasoning was okay. In speech therapy at school. Reading is great (with wonderful comprehension/speed)...but did initially have trouble learning to read in K/1st grade (poor phonemic awareness, had trouble sounding out words, would look at the first and last letter and guess).

 

The margin drift resolved a couple (?) of months after IVIG #1 (IVIG #1 was just b-4 4th grade). Handwriting was getting better during 4th grade, but was inconsistent. Better on some days than others. Math/Spelling never became great...maybe a sign of "incomplete healing" (IVIG #2 needed at the end of 4th grade due to return of PANDAS symptoms after FEB. fever). We're almost 2mo. post IVIG #2...I'm hoping for more healing, we're definitely not 100% (academically or otherwise). I'm thinking it takes time, and perhaps some "relearning"?

 

dd10 is also going into 5th (Lord, have mercy on me!)

-Yes to the margin drift (one OT friend told me that is a "cognitive" sign)

-Mine was dx'd w/convergence ex-sufficiency, but that is line of vision, she never looked cross-eyed

-Ditto to the copying issues

-Ditto to the spelling and I'd throw in punctuation/writing mechanics in that group too.

-Ditto to the high mathematical reasoning, shaky computation

-Pictorial analogies 99%ile, written verbal analogies 78%ile on Terra Novas

 

Oh...yes, we have puncuation/writing mechanics problems too. And we still have some letter reversal confusion. For example, she'll write a capital "D" in the middle of a word so she doesn't have to figure out which way the lower case "d" goes ("d" or "b").

 

Wow, I wish our kids could be in a school together so they could have someone to identify with!

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My dd has PANDAS but also a visual perception issue called IRLEN syndrom or Scotopic Sensitivity Syndrom which is actually a severe sensitivity to light as which causes many visual perception issues you all are explaining seeing in your children. I have mentioned this to Dr. T who finds a coorolation in some of his patients and light sensitivity. I do not believe the two disorders are related but i believe because of the part of the brain that is affected one makes the other worse. My dd is one of those children with the sneezing tic and it is sometimes directly related to the change in light as well as her PANDAS status at the same time. Very complicated I know but I am very familiar with this disorder because my son has it also although he does not have PANDAS. Please look this disorder up on the computer, it may shed some light (no pun intended) on the subject of visual perception problems. If any of you have any questions please contact me, I am happy to talk to anyone about this other bizarre disorde.--By the way the symptoms of Irlen definantly get worse during an attack of PANDAS.

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