wornoutmom Posted January 2, 2011 Report Posted January 2, 2011 Need to get ready for ds' IEP on Wednesday. Does anyone know of any articles out there that speak to how PANDAS affects reading ability? He has never been a strong reader, but 3 years ago when PANDAS knocked him off his feet he lost his ability to comprehend what he reads. The school says he has no reading disability, because when they test him he can read and sound out every word on the page. But he doesn't understand what he's read and is unable to track stories longer than one page. Schedule is switching in 3 weeks to 2 heavy reading courses (he's in 9th grade) and I'm really concerned for him. I was thinking maybe there was some article or something I could bring into the IEP to get the school to take this seriously. I know from talking to enough parents and docs that this is a PANDAS symptom. The schools solution is to give him the book on tape - but he can't seem to track that either. I want them to write chapter summaries for him and put this in his IEP, but need some back up. Anyone know of articles or have experience dealing with schools on this? Thanks!!!!
lyme_mom Posted January 2, 2011 Report Posted January 2, 2011 I dnt know about Pandas but Lyme can also impact cognition and this is well documented. Google the ABC's of Lyme Disease for a great overview of how tick borne infections affect children in school. There are blurbs in the flyer from top Lyme experts in a number of diverse fields (pediatrics, psychology, optomology.etc.) written for the purpose of educating schools about how these infections can affect a child.
MomWithOCDSon Posted January 2, 2011 Report Posted January 2, 2011 Need to get ready for ds' IEP on Wednesday. Does anyone know of any articles out there that speak to how PANDAS affects reading ability? He has never been a strong reader, but 3 years ago when PANDAS knocked him off his feet he lost his ability to comprehend what he reads. The school says he has no reading disability, because when they test him he can read and sound out every word on the page. But he doesn't understand what he's read and is unable to track stories longer than one page. Schedule is switching in 3 weeks to 2 heavy reading courses (he's in 9th grade) and I'm really concerned for him. I was thinking maybe there was some article or something I could bring into the IEP to get the school to take this seriously. I know from talking to enough parents and docs that this is a PANDAS symptom. The schools solution is to give him the book on tape - but he can't seem to track that either. I want them to write chapter summaries for him and put this in his IEP, but need some back up. Anyone know of articles or have experience dealing with schools on this? Thanks!!!! I'm not aware of any established opinions regarding reading cognition as a result of PANDAS, but if your DS's PANDAS behaviors include OCD, I can direct you to some professional opinions on related academic conditions, included ADHD-type distractability, and our personal demon, "Obsessive Slowness," which results in his homework taking him much longer than it does a peer of equal academic prowess. This is a very good resource: OCD Chicago - Expert Perspectives
Fixit Posted January 3, 2011 Report Posted January 3, 2011 not sure if this helps or is related... ds need an overlay...they found his tracking was off..(this little older school and some forward teachers who researched this)...different kids need different colors..(try to make sure he doesn't jsut pick his favorite color at the time) well it was magical.. instaed of reading......run....jane....run... once the overlay was on ( a clear colored film)..he could read run jane run...the fluentcys was great..... one theory is the color cuts the glare...black ink on white paper has a glare..especially with the lights at school..i put the overlay on almost immediately felt my eyes relax... and then the specific color was something else with the kids brain..... he doesn't need it now..he did use it for almost 2 years... this may be connected...when this episode hit more than a year ago.(about a year or 2 past when overlay was needed) .i did the brain balance thing for him... one of the exerecses was with they eyes...holding someting..keeping head still. and tracking it...inclduing toward your nose and pulling way back...and then making the image single and making it double it was distrubing to watch his eyes...sometimes they would tic...but not much...or the they would jump back the other direction...or he might say it would hurt... i don't know if they are connected....to each other ... i definitly wonder about their connection to pandas...as it seemed to help again in a different way...(brain balance centers..deal iwth autism..ocd and tics..not sure on their record for the last 2 ..i think he was dong better at end..but i heard alot of good with their adhd results)
marylandmom Posted January 3, 2011 Report Posted January 3, 2011 Fixit, where did you get this overlay ?
browneyesmom Posted January 3, 2011 Report Posted January 3, 2011 I'm interested in where one can get such an overlay too. I don't know if this helps you as I don't have any articles to provide; however, my DD11, who usually reads about 3 years above her level... and climbing, tested lower at the beginning of this school year than she did half way through last school year - that's never happened - and, I do see a decrease in her comprehension also. I hope your meeting goes well - we had a horrible time at her elementary school, but the middle school she attends now - oh gosh, they are wonderful and have been a huge blessing in all this!
wornoutmom Posted January 3, 2011 Author Report Posted January 3, 2011 brown eyes: This anecdotal info is what I am talking about! I have talked to so many moms who say their child's reading ability has been affected! When ds was at his worst in 6th grade he reverted back to reading "the hungry caterpillar". His brain just couldn't intake more. He can read short articles and non-fiction, but cannot track/remember through a fiction chapter book. We handled it last year by me reading to him and then writing down a summary after each chapter to remind him of what was going on. But he can be 3/4 through a story and not remember the main character's name!! The school doesn't consider him reading disabled and the only thing I can push for is the OCD angle, though he swears he is not re-reading or repeating words or anything. He does the same thing with movies. We have to pause many times to re-explain the plot. There are also the requisite reassurance questions he asks, but this is different than the confusion. I think I many approach it from the "doubting" angle and see if the school will understand it that way. MomofOCDson- thanks for the website. I think there is something in there that may be useful. Fixit - I may try the overlay to see if it does anything. This is like a colored report cover, right?? I'm interested in where one can get such an overlay too. I don't know if this helps you as I don't have any articles to provide; however, my DD11, who usually reads about 3 years above her level... and climbing, tested lower at the beginning of this school year than she did half way through last school year - that's never happened - and, I do see a decrease in her comprehension also. I hope your meeting goes well - we had a horrible time at her elementary school, but the middle school she attends now - oh gosh, they are wonderful and have been a huge blessing in all this!
Fixit Posted January 3, 2011 Report Posted January 3, 2011 Luckily, the school provided it for him both years and sent him one for home, which i kept in a plastic sleeve.. they where kind enough to replace his..he was very rought on them i don't know if it like a report card... do you know how the new folders, the kind you buy at target or walmart...the plastic kind they have now..and some are opeak...and some are more tans lucent... it's translucent...almost the size of a peice of paper....not 8x10 though..just measured, its 5 1/2x8 so it would fit in a smaller paperback i guess... i offered to buy them, when ds destroyed his... i have to go to the school tomorrow..to talk about ds8.. i will try to talk to the teacher to ask how we can purchase them i did just search it...i see some that look similar.. Crossbow Education..... my ds was a dark red..... i would start with the main colors ..ie blue, red, yellow, orange, green,...before trying the other colors..it said 5 for $27..
Fixit Posted January 3, 2011 Report Posted January 3, 2011 ps..on a bad note... they would not let him do state testing with overlay...you know ..the fill in the dot tests... he would need special notes from every doctor and probably some eip or 504...which i still can't get.... he is doing well and based on that, i 'm having a hard time getting approval...(and mostly doesn't need it...but on occasion when he ramps...i would like it) its funny ..this public school he attends, can think outside the box...finding things like overlays and providing them.. but i guess they have to follow state laws... they would let him use it for math if he wanted too ...but his math is great.... and they would let him use it for any other areas he needed...
kimballot Posted January 3, 2011 Report Posted January 3, 2011 Hi - My son does not have reading problems, per se, with exacerbations, but he does have memory problems. He does OK with fiction, because he tends to read books in series so he knows the main characters, but he does not do well with reading for course subjects. Also, cannot remember what was said during lectures, cannot remember directions, and cannot remember what he was supposed to do with homework - even if he does remember to bring it home. It is terribly frustrating and hard for the school to understand because he is capable of doing these things when not in exacerbation (ie: start of school year when teachers form opinions about kids' abilities). Perhaps the school is not testing your son for the right thing. Perhaps he needs more of a test of memory (when he is in exacerbation). Have you taken him to an outside neurpsychologist? You should be able to find one covered by your insurance and the cost should not be more than what your co pay would be for other medical professionals (I believe the mental health parity law is in effect in all states now). The school will most likely defer to an outside evaluator - they just do not have the time and manpower to do intensive evaluations with all the kids.
momcap Posted January 3, 2011 Report Posted January 3, 2011 RE: the overlay - My DS7 is the opposite. He will only read black on white. If the page is coloured he says his eyes hurts and he shuts down. Weird. I don't know if this is OCD or something physical going on in his eyes/brain.
MomWithOCDSon Posted January 3, 2011 Report Posted January 3, 2011 He does the same thing with movies. We have to pause many times to re-explain the plot. There are also the requisite reassurance questions he asks, but this is different than the confusion. I think I many approach it from the "doubting" angle and see if the school will understand it that way. Wornoutmom -- We have the very same thing with movies! I think it is a combination of OCD and legitimate processing differences in some of our kids. In our DS's case, his auditory processing seems to lag a bit, and then the OCD doubting kicks in and he becomes convinced he's missed some key plot device or dialog or character trait. So we pause and discuss, or we sometimes even rewind so he can "catch" what he "missed." As he's improved, we've tried to take a harder line on the pausing/rewinding thing as it seems very closely tied to the OCD but, to be fair, the processing is definitely different. It may also be tied up with short-term memory function; I know I've read several accounts here about how challenged short-term memory function is in some of our kids. Even that trait gets caught up with what's more commonly understood as "ADHD," as in, it's not that they're forgetting . . . it's that they weren't paying attention in the first place. But I know our DS pays very close attention at some points . . . almost obsessively so . . . but is either literally forgetting our so strongly doubting what he remembers, that it's all for naught. From our personal experience, the OCD angle works pretty well with the academic community. There's quite a bit of literature to support the behaviors and accommodations that most "newbies" consider "legitimate" (as opposed to anecdotal, which our school is not especially fond of), and, in the end, you want accommodations that help your child in the learning environment, whatever the seed of them may be. Good luck in your meeting!
Fixit Posted January 3, 2011 Report Posted January 3, 2011 RE: the overlay - My DS7 is the opposite. He will only read black on white. If the page is coloured he says his eyes hurts and he shuts down. Weird. I don't know if this is OCD or something physical going on in his eyes/brain. see..that is a good question and observation...this is why we all post..the brains storm is great... here is a thought...based on me..... when i read with ds overlay..i would say i can see how the glare or contrast is cut down... on the other hand..i will agree with your ds.... when things are PRINTED on color..i feel i can't read it was well either..maybe the ink blurs a little.. .as they are printed onto the color, but black on white keeps the edges crisp.. and i wonder if i feel the same on glossy paper ie a magazine vs recycled flat paper.. ie i find newspapers less straining on the eye this is all in hind site as i think about my reading ...what i avoid reading in waiting rooms and that i've had the opportunity to read with the overlay these are all just subtle differnces i've noticed... why don't you just do a little reading yourself...a mag and then a newspaper..see if you notice the little differences
Phasmid Posted January 3, 2011 Report Posted January 3, 2011 My son was an early reader, well above his grade level. In fact, he could read before entering kindergarten. During his acute episodes, he couldn't focus at all to read anything. It was totally exhausting to him to read for school. He was home for three weeks from school during his really horrible episode, and I had to read his school work to him. He recovered and was fine after that. During recent exacerbations, he has dealt with reading issues again. This includes feeling that he has to re- read everything - over, and over, and over... which could be problem comprehending what he reads, or just having the compulsion to re-read. It is sad to hear him do that. When he goes on azithromycin for 10 days (that is what we do for each exacerbation which seems to come once per month or so now), that reading problem goes away.
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