ajcire Posted October 23, 2009 Report Share Posted October 23, 2009 Vickie, my pandas ds received speech services only from the time he was 3-4 for exactly that... a phonological disorder. He shows no trace of it now and for him it was a pretty quick fix. They said he was doing something called fronting I think? Well, he's always had a speech disorder. So does my older (non PANDAS) son, but not as bad. It existed long before he had strep, long before behavior changes. He also makes good progress in speech therapy. He did have a big slow down in progress when his PANDAS symptoms were present. So I do think there's a connection there. They catagorize it as a severe phonological disorder. . As for any disorders. My son has a speech disorder. Not related to PANDAS. Vickie, not to be nosey- but how do you know its not related to PANDAS Link to comment Share on other sites More sharing options...
EAMom Posted October 23, 2009 Report Share Posted October 23, 2009 I noticed that in the mouse paper too and thought it was weird...if anything my dd has reduced memory/visualspatial ability. BTW...did you notice that is was the male mice that were affected? Is it possible that PANDAS affects male/female children differently? I did think it was interesting that Sammy (saving sammy) didn't seem to have deterioration in math skills due to PANDAS but that is a common issue with many others. My pandas dd's IQ was 142 Nov 07 (b-4 big pandas episode, although she had undiagnosed episodes b-4 that) and then 120 Nov 08 (after big full-blown pandas episode, but starting to show symptoms again.) She does have a lot of trouble with spelling (horrible!) and remembering math facts. The math/handwriting is improving post IVIG. I'm not so sure about the spelling (so maybe that is un-related to PANDAS?). She is a voracious reader with excellent comprehension. Anyway, during testing, in Nov 08 they did something called the rey-osterrieth complex figure test which she COMPLETELY failed ....4th%'tile. Has anyone elses PANDAS kid had this test (while in a pandas episode?) It would be interesting to repeat it in a year or so...to see if IVIG had any influence on her score. The Rey-Osterrieth Complex Figure Test (ROCF) is a neuropsychological assessment in which examinees are asked to reproduce a complicated line drawing, first by copying and then from memory. Many different cognitive abilities are needed for a correct performance, and the test therefore permits the evaluation of different functions, such as visuospatial abilities, memory, attention, planning, and working memory (executive functions). First proposed by Swiss psychologist André Rey in 1941 and further standardized by Paul-Alexandre Osterrieth in 1944, it is frequently used to further elucidate any secondary effect of brain injury in neurological patients, to test for the presence of dementia, or to study the degree of cognitive development in children. http://en.wikipedia.org/wiki/Rey-Osterrieth_Complex_Figure Link to comment Share on other sites More sharing options...
bubbasmom Posted October 23, 2009 Author Report Share Posted October 23, 2009 But the gifted thing is interesting to me because when you get to know gifted kids, some of them are quite quirky. In fact, before finding out all I have about PANDAS, I have wondered what all could be attributed to 'gifted kid syndrome'. But here's is an interested factor. My son has a 'reading comprehension problem'. Can read you a medical journal, just can't tell you what it means. We put him in a READ 180 program. It helped. His whatever scores went up to say 685 - whatever that means. But it was good for him anyway. That was tested in May. In September his scores on the same test dropped by over 300 points. I got a call from the principal saying obviously he wasn't trying. In the history of the school no kid has ever dropped that many points (and its an old school). So they made him retake it. He came home excited said he did much better - it came up literally TWO points. But guess what he also had started in with the PANDAS symptoms then. So I will be really curious after his IVIG Monday to have him retake the same test and see if his scores jump. I just think that might be documentation that we fall into accidentally, but could be benificial to getting these PANDAS kids help at school work. WE ALL NEED TO HEAD TO MED SCHOOL AFTER PLAYING DOCTOR FOR SO LONG WITH OUR KIDS!!! That's all, just wondering? My son is and I saw another parent describe their child that way - just trying to see if that is a factor. My son's IQ is in the mid 130's. Link to comment Share on other sites More sharing options...
EAMom Posted October 23, 2009 Report Share Posted October 23, 2009 Here is a paper where OCD patients had trouble with the Rey Complex figure test http://cat.inist.fr/?aModele=afficheN&cpsidt=17266237. Weird huh? Link to comment Share on other sites More sharing options...
peglem Posted October 23, 2009 Report Share Posted October 23, 2009 I really think all those IQ, psych tests and stuff are very innaccurate when it comes to our kids, given their tendencies to not express themselves well, get "stuck" on intervening thoughts and just generally having trouble processing sensory motor stuff. My take on the mouse model thing is that it was not so much the visual spatial memory enhancement, but the fact that the mice kinda obsessed on that...processed the information repetitively, and so performed better. You do sometimes hear of people who become highly successful at something because they are so obsessed with it- it may interfere with other areas of their lives and functioning, because they exclude other things to pursue the obsession. I'm thinking like Einstein (who many theorize was aspergers). Especially in his younger years, he was pretty dysfunctional in a lot of ways- Hmmm- wonder if Einstein was prone to strep infections? Link to comment Share on other sites More sharing options...
EAMom Posted October 23, 2009 Report Share Posted October 23, 2009 That is interesting about his reading comprehension being affected...perhaps b/c of ADHD from PANDAS....so he can't focus and pay attention to what he is trying to read? Link to comment Share on other sites More sharing options...
bubbasmom Posted October 23, 2009 Author Report Share Posted October 23, 2009 That's funny about being a great witness. My oldest daughter (without PANDAS) is definitely gifted and has a high IQ of 149 has that photographic memory and has GREATLY used that to her advantage accademically. She study's for her history class by making these random posters with pictures drawn on them to remind her of events. Or I'll go in at night and she'll have her eyes closed giggling. When I ask her what she is doing she'll say "Watching an episode of Zach and Cody in my head". Goofy, but she sees one episode and has it memorized first time around. I would get him tested in first grade, you can request that from your district. If they have a gifted program the kids generally really enjoy it. I don't think my son is gifted, but I have a feeling each PANDAS child as they get older will really exceed at something. They'll have a knack for an area of interest.Like for my son, he's 6 years old and in kindergarten. He's not necessarily behind, but doesn't have a real interest in learning letters, reading, etc. However,I can see he has an amazing memory. He can also look at something and dissect it with his mind. He enjoys learning things in school as oppose to singing songs and doing kindergarten like activities. As he gets older, I am interested to see what we learn about our little boy and what he can accomplish. As for any disorders. My son has a speech disorder. Not related to PANDAS. My son's teacher last year (first grade) told me she is convinced he has a photogenic memory. I don't believe he has that but his memory is crazy good when it comes to weird details that most people don't pay attention to. He would make a great witness to a crime. Link to comment Share on other sites More sharing options...
EAMom Posted October 23, 2009 Report Share Posted October 23, 2009 Your dd is Cam Jansen! Link to comment Share on other sites More sharing options...
pixiesmommy Posted October 23, 2009 Report Share Posted October 23, 2009 Pixie has a fantastic memory as well. More long-term vs. short-term though. She tested gifted as well. Will have to look up what IQ score she had. Also, yes, there was something I just read about Einstein having strep infections and they were thinking he may have actually died of RA. Link to comment Share on other sites More sharing options...
ajcire Posted October 23, 2009 Report Share Posted October 23, 2009 Bubbasmom, don't even get me started on the school thing... he is now in second grade but I have been dealing with the fact that he is bored in school since preschool. When he was tested because of his articulation issue the psychologist at the time told me I would have my work cut out for me when he got to school and she was right.. Unfortunately our state does not recognize gifted.. If we lived in some other states he would actually have an IEP to meet his needs. I taught special ed and never thought I would feel this way but I am so angry that money is only going to that end of the spectrum of special needs. The psychologist told reminded me that gifted kids do have special needs... they just get nothing here to help with it. That said we have a good gifted program that doesn't start until 3rd grade. I have thought a lot about it and the problem is that I am not looking for him to be labeled gifted or to be pulled out for a period during the day a few times a week to a gifted program. Don't get me wrong, I am looking forward to hopefully that being something for him to enjoy if he qualifies next year but I want his academic needs to be met all day... of course that is not possible in the public school here and right now that is the only option for us. He's learning though and we did find that most frustrating year was kindergarten.. but it has gotten better and his teachers have been great at trying to challenge him while understanding who he is. I have never mentioned pandas to them because his pandas behaviorial issues and even tics don't present in school and I felt there was no advantage to me bringing it up right now. His first grade teacher did know I was thinking he had this because I was going through serious sleep issues with him that year and I did talk to her about it. Skipping him ahead was not an option for us he is already one of the younger in his grade and socially I think it would have been bad for him. Plus there are definitely things with writing skills he still needed to get... they break into reading groups so I feel ok with that but it's that he gets no challenge in math that frustrates him. Oh gosh, I said photogenic memory.. I meant photographic. He clearly doesn't get it from me That is too funny that your daughter can watch reruns in her head That's funny about being a great witness. My oldest daughter (without PANDAS) is definitely gifted and has a high IQ of 149 has that photographic memory and has GREATLY used that to her advantage accademically. She study's for her history class by making these random posters with pictures drawn on them to remind her of events. Or I'll go in at night and she'll have her eyes closed giggling. When I ask her what she is doing she'll say "Watching an episode of Zach and Cody in my head". Goofy, but she sees one episode and has it memorized first time around. I would get him tested in first grade, you can request that from your district. If they have a gifted program the kids generally really enjoy it. I don't think my son is gifted, but I have a feeling each PANDAS child as they get older will really exceed at something. They'll have a knack for an area of interest.Like for my son, he's 6 years old and in kindergarten. He's not necessarily behind, but doesn't have a real interest in learning letters, reading, etc. However,I can see he has an amazing memory. He can also look at something and dissect it with his mind. He enjoys learning things in school as oppose to singing songs and doing kindergarten like activities. As he gets older, I am interested to see what we learn about our little boy and what he can accomplish. As for any disorders. My son has a speech disorder. Not related to PANDAS. My son's teacher last year (first grade) told me she is convinced he has a photogenic memory. I don't believe he has that but his memory is crazy good when it comes to weird details that most people don't pay attention to. He would make a great witness to a crime. Link to comment Share on other sites More sharing options...
peglem Posted October 23, 2009 Report Share Posted October 23, 2009 Also, yes, there was something I just read about Einstein having strep infections and they were thinking he may have actually died of RA. That gives me such an eerie feeling... Link to comment Share on other sites More sharing options...
ajcire Posted October 23, 2009 Report Share Posted October 23, 2009 Also, yes, there was something I just read about Einstein having strep infections and they were thinking he may have actually died of RA. That gives me such an eerie feeling... That is definitely interesting and eerie... Link to comment Share on other sites More sharing options...
thereishope Posted October 23, 2009 Report Share Posted October 23, 2009 They now found that Mozart died from a strep infection. is he the one who cut his ear off? Hmmm- wonder if Einstein was prone to strep infections? Link to comment Share on other sites More sharing options...
peglem Posted October 23, 2009 Report Share Posted October 23, 2009 Vincent VanGogh cut off his ear. Link to comment Share on other sites More sharing options...
thereishope Posted October 23, 2009 Report Share Posted October 23, 2009 My son watches tv shows in his head too. He also can act out a whole episode with quotes. It makes him hard to play with because he gets frustrated that I can't remember what to say.He memorizes short book after one read and things from years ago that my husband and I forgot. He's 6 and he'll remember things from 3 yrs and younger. When I ask her what she is doing she'll say "Watching an episode of Zach and Cody in my head". Goofy, but she sees one episode and has it memorized first time around. Link to comment Share on other sites More sharing options...
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