EmilyK

These are great!

My friend suggested that too. School year is almost done, so I may just save that idea for now. The school nurse and director are excellent at least. Thanks for posting your earlier thread Emily

Oohhh . . . is there enough paper on the planet to encompass all of that?!?! More seriously, though, I think we might want to range it by age a bit, also, since certain interventions work best for certain age groups, and behaviors can shift, also, as kids get older and more self-conscious about how they're perceived by both adults and peers (generally, more introverted, from what I've seen). My fear is that teachers are frequently wary of "too much information" pertaining to a single student, so I wouldn't want to bomb them with a paper so long they'd have a tendency to blow it off, rather than find it helpful. Maybe we could get a start with something like: All Ages 1. Handwriting deterioration -- student may experience a sudden deterioration in the legibility of writing, decreased ability in all art and/or fine motor skills as a result of PANDAS. Interventions might include permitting scribing by a parent or teacher, utilizing a keyboard instead handwritten papers or assessments, or oral/verbal assessments and projects in place of written ones. (My DS actually has a written accommodation that exempts him from having to hand-color projects or assignments! He finds it very challenging to hold a crayon, colored pencil or marker for the extended period required to complete some of the ridiculous "color this" assignments -- even in high school, believe it or not, and he has a hard time seeing the point in it when he can program perfectly beautiful colors and/or graphics on the computer.) Especially in higher grades, teachers sometimes assign art-oriented or "make it look nice" projects because, for the typical student, it's a nice break from the rigors of the more meaningful, intellectual assignments. But for kids for whom writing and/or drawing requires extra effort, these "easy" assignments ironically become the most challenging. 2. Emotional lability -- student may display an age-inappropriate response to frustrating events or tasks, or may appear "on top of the world" one moment and in the depths of despair the next. Interventions might include a neutral, "cooling off" space away from the chaos of the classroom or a quite, individual activity that the child finds enjoyable so that he can regroup/refocus and then rejoin the rest of the class 3. Deterioration in mathematical speed -- which mathematical concepts are still relatively readily grasped by PANDAs students, the speed of the processing or the production of mathematical proofs may suffer, prohibiting the student from constructively participating in flashcard drills, timed assessments, etc., and then potentially leading to an age-inappropriate response such as identified in #2. Interventions to consider would include exempting the student from such drills, granting additional time for assessments, and/or reducing assessments and homework assignments for quantity, not quality (i.e., the student should have enough problems in variety and number to demonstrate a grasp of the concepts, but not so many that he cannot complete the assignment within a reasonable time frame). 4. Problems with punctuality -- the student may have trouble arriving to school or class on time, making the transition from one class to another, making trips to a locker or cubby for appropriate materials for the next class/activity, etc., generally due to obsessive concerns with doing things "just right," organization (or lack thereof), bathroom breaks, etc. For an appropriate intervention, the student should be excused for all tardies within a reasonable time frame, and additional "breaks" should be built into the student's schedule whenever possible. 5. Additional potty breaks -- the PANDAS student may require additional bathroom breaks, both scheduled and unscheduled, due to an increased urinary frequency or contamination concerns or both. Breaks should be granted, though the teacher should work with the parent and/or the child's therapist in arriving at a "reasonable" response to any obessive behaviors in this regard as permitting such breaks on an unfettered basis could further contribute to the student's obsessive behavior in this regard. I'm sure you know, I could go on and on! Those would sort of be my Top 5 with respect to our own experiences. I'm sure you have a magnificent list of your own! Maybe if it were formatted in sort of a chart format, with "short-hand" for the interventions and explanations so it didn't look too intimidating? If the likely behaviors were featured on the left-hand side, and all the teacher had to do was look up a given behavior (alphabetically?), and then run her finger over to the column featuring the "Suggested Intervention"? Maybe that would work? This sounds fabulous

So, if he's holding it together at school for the most part, is the problem that, once he's home, he's too much of a mess to complete homework or projects that are supposed to be turned in the next day, and that's impacting him academically? What is his primary behavior set? Does he exhibit OCD that translates into avoidance or perfectionism over school work? Is he anxious and/or oppositional? Is his condition negatively impacting his sleep so that getting moving and staying engaged throughout the school day is problematic? Does he have a 504 Plan or an IEP? Good luck! Yes - too much of a mess to complete homework, or unfinished classwork that also comes home. Work with the therapist has helped somewhat. OCD - just right and perfectionist like crazy! Yesterday, he started to get frantic in the car because I took a route with an "ugly turn" which was giving him "a very bad day" as he put it. When he melts he rages sometimes. He's too anxious to sleep and sometimes to eat. Pre-penicillin, he was refusing to eat convinced he'd throwup - even his favorite foods and things like birthday cake. That's improved with penicillin. He's been on penicillin since early April but we just learned that he's still strep positive. He has a cough and sniffling that come and go and appear not to be mucus-induced, so I suspect that is a tic. Not sure... I requested a 504 meeting just a few days ago. I struggle to get them to understand the distractibility and reluctance to do math and writing - that it's not just oppositional or lazy. He does have an intervention with the OT. They do make modifications, but sometimes their mini intervention plans to help him attend better only make him more anxious as he's certain the world is staring at him because he has a plan. Thanks for the ideas! Emily

How do you deal with disbelieving teachers? especially since my ds is one to valiently hold it together as much as possible at school and then be a wreck once he's out...

Good to know! My youngest and myself are both allergic. I'm asthmatic and he was just evaluated for asthma two weeks ago. At the same time, my oldest started to flare up with PANDAS symptoms again. I'm thinking we should all be tested for mycoplasma? The blood test will be simple for me, but not so simple for the 6 and 7 years olds in question

So it is possible to have a flare up while on penicillin? It's not as severe as pre-penicillin, but difficult nonetheless. My son has been diagnosed just this spring. He responded very favorably to his first three weeks of antibiotic. Flared up immediately when off and was then given another 30 days. He's doing much better but we are have some meltdowns and compulsive behavior again. I'm not looking forward to the end of the 30 day dose. It's great to find this forum