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I was able to get our Neuro to give us the note for a 504 plan. But she put on it for ADHD which was diagnosed today. So do I need another one for the PANDAS? She wasn't willing to put it on there.

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I think it depends on what you are asking for on your 504. If you are asking for accommodations for the ADHD (ex: seating up front, longer time for tests, quiet room for testing) and that will be enough, then you really do not need the PANDAS documentation. If you are asking for something that is more PANDAS related (such as unrestricted bathroom visits or reduced writing during exacerbations), then you will need to re-think this.

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I would echo Kimballout.

 

Though some might feel strongly about having PANDAS specifically designated in the paperwork as opposed to any one of the multitude of other labels that are more commonly used for PANDAS behavioral manifestations (like ADD, ADHD, OCD, etc.), if your child's needs can be met through accommodations tied to one or more of these more readily accepted labels, doing battle with the school over the terminology may not be the best expense of your time or energy.

 

The term "PANDAS" isn't necessarily all that meaningful on the paperwork anyway unless it is accompanied by a full understanding of what the condition is and the behavioral manifestations that come with it. In the end, the only accommodation that I can think of that would be specific solely to PANDAS and could not be covered under one of the other terms might be immediate notification of potential strep exposure in the classroom.

 

But as Kimballout said, if your child has other PANDAS needs that don't neatly fit with a strictly ADHD diagnosis, then you're going to have to do some battle, anyway. In that case, I'd think it would be worthwhile to get the PANDAS diagnosis clearly "on the books" so that if you, at any point in time, need to relocate the 504 to a different school or you're ready to move it on up the school "food chain" to junior high and/or high school, you have the PANDAS and all that can come along with it in the file, on the record, and available for the crafting of any future accommodations if need be.

 

Good luck!

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So I need letters from her doctors to support the PANDAS to show to the board? I have no idea what I am in for with this. From the research I did here, it seems like a hard battle.Ugh,why can't 1 thing be easy for us?

 

 

 

 

I would echo Kimballout.

 

Though some might feel strongly about having PANDAS specifically designated in the paperwork as opposed to any one of the multitude of other labels that are more commonly used for PANDAS behavioral manifestations (like ADD, ADHD, OCD, etc.), if your child's needs can be met through accommodations tied to one or more of these more readily accepted labels, doing battle with the school over the terminology may not be the best expense of your time or energy.

 

The term "PANDAS" isn't necessarily all that meaningful on the paperwork anyway unless it is accompanied by a full understanding of what the condition is and the behavioral manifestations that come with it. In the end, the only accommodation that I can think of that would be specific solely to PANDAS and could not be covered under one of the other terms might be immediate notification of potential strep exposure in the classroom.

 

But as Kimballout said, if your child has other PANDAS needs that don't neatly fit with a strictly ADHD diagnosis, then you're going to have to do some battle, anyway. In that case, I'd think it would be worthwhile to get the PANDAS diagnosis clearly "on the books" so that if you, at any point in time, need to relocate the 504 to a different school or you're ready to move it on up the school "food chain" to junior high and/or high school, you have the PANDAS and all that can come along with it in the file, on the record, and available for the crafting of any future accommodations if need be.

 

Good luck!

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ADHD is not one of the 14 disability categories recognized; it would be OHI (Other Heath Impaired) which would be the same category for PANDAS without all the drama, confused expressions or eye rolling.

Yes! But, I would think one of the things that needs to be addressed for PANDAS is that accommodations have to be "as needed" since what the student needs during a PANDAS flare up differs greatly from what they need when they are in remission. I think that's the hardest thing about educational planning for this disorder- its like you're dealing with several different children in one student.

 

Remember, too, that the plan is made to fit a students needs, whatever those are, not the label or diagnosis.

Edited by peglem
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When it comes to the school and things like IEP and 504 Plan, I would take any accomodation you can regardless of what dx it falls under. Does your child also fall under the guidelines for OCD? If so, you could ask that OCD be tagged on as another dx. Collectively, with the ADHD and OCD dx, you cold get a lot that a PANDAS chils would get. I think you can get more with adding the OCD dx onto it. That dx would get you things like multiple absences,tardies, unrestricted bathroom visits, etc.

 

With the school, you can go onto to tell them your child has PANDAS and that can even be included uner medical history without having it written down by the doctor. My son has an IEP for speech, but I do have PANDAS listed under med history. I didn't have to provide anything to back that up since he isn't getting accomodations for it. But, for me, I wanted it listed since I ask that I get notified for strep in the classroom and if he should ever have another exacerbation. I don't want the school to say, 'Why didn't you tell us he had that?".

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