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I am new here and dealing with the elementary school regarding getting my child a 504 plan. The school keeps insisting on a Behavior plan instead. My child is fine when not flaring and maintains excellent grades. However, when there is a flare, my child can experience high anxiety and requires shortened assignments, more time, etc. to get through school work. Any ideas here? Thank you!

Edited by SPACECOASTPANDAS

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You could tell them you would like both. A behavior plan does not have any legal "teeth" to it like a 504. If your child has a 504 it would have to follow him/her through the years. It may be the school is not understanding what PANDAS is...it is a health condition. With a behavior plan they should also do a functional behavior assessment, it may be hard to identify function when what is triggering the behaviors is a cold, strep etc. Therefore I would think a 504 is more appropriate because it will allow for accomdations when she is struggling during flairs. I do work for a school district and have a child with PANDAS, feel free to message me if you need other ideas or help. Good Luck!!

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Personally, I find the school's insistence on a "behavior plan" a sign that they view your child's issues as strictly behavioral, so perhaps some education is necessary. I agree that your child could, maybe even should, have both a 504 and a behavior plan, but the behavior plan doesn't override the need for the protections provided in a 504. I would insist on having a 504 meeting; bring some "plain-talking" PANDAS information with you to distribute to the school administration and teacher(s). You're going to need to stress the fact that, during a PANDAS exacerbation, a behavior plan without a solid understanding of the underlying PANDAS issues is likely to be useless.

 

For example, if your child suffers from small motor deterioration (handwriting and/or scissor work) during exacerbation, then only a behavior plan that recognizes that "trying harder" or "taking more time" alone aren't likely to be successful solutions to this deterioration condition, is appropriate. Rather, the behavior plan would need to provide for alternative activities or options, such as keyboarding instead of writing, or an art assignment that did not rely on precision scissor work or which could be done cooperatively with another student so that the more challenging small motor components of the project could be handled by the partner while your child took on the components of the task that were manageable for him/her.

 

I would be polite, but insistent on the matter. You don't want to wrankle everyones' nerves before even coming to the table, but you want to let them know that you're going to advocate for your child and will not roll over and play dead, especially when they appear to be ignorant on the underlying issues.

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I am new here and dealing with the elementary school regarding getting my child a 504 plan. The school keeps insisting on a Behavior plan instead. My child is fine when not flaring and maintains excellent grades. However, when there is a flare, my child can experience high anxiety and requires shortened assignments, more time, etc. to get through school work. Any ideas here? Thank you!

 

 

are you working with a doc that would write you a diagnosis letter for PANDAS? Not a big explanation, short and to the point? have you seen the info on pandasnetwork.org from the conference in the spring that includes some fabulous info about schools? i can't recall right now but let me know and i will send you a link -- there were info sessions from an educator specifically talking about challenges for PANDAS in school.

 

 

all that said -- last year, we had a disastrous year even with a 504. i think i made the mistake of giving too much info -- they sat back and thought they knew nothing about this odd disorder and they'd let me run the show -- only it was my first year with public school. i had asked for compassion and understanding -- not to pretend there were no problems and then freak out when things didn't work out -- and things spiraled from there. however, i do believe that is the exception, not the rule -- this year, we are at a new school and they have been fabulous.

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This may spare you some unnecessary angst and anger at the administration...When I first asked for a 504, I was offered a behavior plan instead, which I felt was insufficient. We went around and around and I felt like I was hitting my head against a wall of bureaucracy. The only way I got one was afer I found a Pandas doctor and submitted a letter from the doctor, giving my son the offical diagnosis of Pandas, a list of associated behaviors and learning issues, examples of appropriate accommodations and the explicit sentence that my son's condition qualified him for a 504 Plan under the Individuals with Disabilities Act (IDEA).

 

Once I presented that letter, it was like Moses parting the seas. Whether they wanted to help me or not, they now had a legal obligation to do so and could not go against what a doctor said was a medical need. Without that letter, they can make you feel like a dog chasing its tail and really don't have to do very much.

 

Several of us have sample letters we can send you or you can search the forum for 504 letter and see a few things posted in the past. Some of the pandas websites also have sample letters. When I needed a 504 for my daughter when she was missing school for an epstein barr virus, I wrote the letter and the doctor's assistant retyped it onto their letterhead, changing a few words as she felt appropriate. The doctor then signed it. It helps a busy doctor to have a draft to start from and it's more likely to get done quickly. With that letter in hand, I got absolutely no argument.

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I will second what LLM has said. We have only had support and kindness from the two school systems we have been in (DC and NJ), however, we have always approached the school with a short letter of diagnosis from a neurologist, and a longer letter of requested accommodations from a psychologist. Maybe because of this, we were taken seriously, and anything we have wanted has been done without issue.

 

An on-board psych is invaluable. They can be a resource to you, and to the teacher if needed.

 

Good luck!

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You have gotten some really great advice from others already, but I wanted to mention one more thing. My son's onset of PANDAS was at the beginning of last school year and as the year progressed and we had meetings i also requested a 504- they kept a wait and see attitude but his classroom teacher (who was the one who had do deal with him!) found herself naturally making her own accommodations with ideas also given by me. So I called another meeting with official diagnosis and report in hand with some basic PANDAS info and told them that since the teacher was already making accommodations we needed to make it "official" with a 504. My reasoning, which they agreed with was that `1. He was legally entitled. 2. If something happened to his teacher (ill, pregnant etc) or we moved etc there would be no continuity and a halt in the progress they had made with him in his classroom. I laid the foundation with his teacher by giving her praise and positive feedback on the things she was doing for DS so she advocated for him to have the 504.

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I would like to thank ALL of you who responded. You gave me some excellent advice. I will definitely have the doctor write a letter about my DS10 PANDAS as a medical condition and all that he needs. I had already given the team some information about PANDAS from the Pandas Network and the Psychologist had written a letter about my DS10 OCD and the modifications/accomodations he would need. However, this was not enough for them. The don't seem to be getting the "medical" cause here. They seem to feel my child is acting out when he has an anxiety attack. It is very frustrating to me. I will try to gather some more basic information to share with them. I really appreciate having other Moms to turn to here. Thank you for listening and for all your super advice!

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spacecoast -- do you have this? http://www.nimh.nih....broadened.shtml

 

there are some really good quotes from Dr. Swedo in there that may help drive the point you are trying to get across. i can't really remember -- i think i highlighted or somehow pulled out a paragraph. at the time, i had found an old flowchart that listed Swedo's title at NIH -- great graphic -- but then i found out it was a couple years old and not really accurate anymore -- oops -- but it showed a great point for me -- and not really erroneous, just not fully accurate.

 

 

i do agree -- you've got to get them to understand the point you are trying to make, however -- my advice would be to try to do that as briefly as possible -- hopefully, a doc letter will have them get to 'oh yes, right, he's eligible' and then get on to what he needs. i really feel i made a big mistake last year in having them see me as an expert and feeling they weren't sure of the disorder and what to do -- this year, our school has taken a different attitude in yes, they may not know of this specific disorder -- but they can see behaviors and learning issues that they have familiarity with and know what to do about. so, it's much more successful in looking at ds, his needs and how best to meet them, rather than 'wow, we've never heard of that and aren't sure what to do.'

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I think many of us have an unusal battle. Because of the nature of this condition - theoretically they are fine when they're healthy, lunatics when they're sick (and I mean that nicely :D ) , leads many in school to believe it's behavioral. Put that on top of the fact that lots of our kids have good grades, gifted, etc...and are usually very well behaved, and you get the "they know better than to behave like that" issue too.

 

I've always tried to take the behavioral aspect out of it when describing PANDAS for the school. It's rheumatic fever of the brain - period. Brain gets inflammed - period. When brain is inflammed these are the "symptoms" that present - period. I purposely try to avoid using the word "behavior". The OCD, ADHD, ODD, Tourettes are "symptoms" of the disease - just like fever, sore throat are typical "symptoms" of strep. From there, you just need to focus on how it impacts them academically because that's all they care about (learned that from deailng with my youngest).

 

My youngest is 5, was dx at 2, and transitioned into the school district at 3 from Early Steps - so we have his IEP in place for when he starts kindergarten next year. But considering he's already reading WAY beyond a 1st grade level, doing complex math etc...we expect to have this same problem with him over the years. His current teacher and I have already discussed the appropriateness of adding a behavior plan to his IEP - and it will likely happen next year for K; but as a tool to help him self-regulate. A reminder of what he's supposed to be doing vs. consequences for anxiety.

 

He has spent 2 1/2 years in a special ed pre-K where he has THRIVED and will start K at a charter school with my daughter next year When she was dx, our previous experiences dealing with his IEP helped us deal with her school - and we had very little problems. This year, they already told me there are 2 other kids with PANDAS at the school other than my daughter - and it was the information WE provided to them about her that helped them through the proccess with other families.

 

I do still worry - on a scale of 1-10; my son is a 10 when he's symptomatic while my daughter, at her worst is maybe a 4-5. They have no idea what's in store for them when Hurricane Broderick hits next year!

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spacecoast -- do you have this? http://www.nimh.nih....broadened.shtml

 

there are some really good quotes from Dr. Swedo in there that may help drive the point you are trying to get across. i can't really remember -- i think i highlighted or somehow pulled out a paragraph. at the time, i had found an old flowchart that listed Swedo's title at NIH -- great graphic -- but then i found out it was a couple years old and not really accurate anymore -- oops -- but it showed a great point for me -- and not really erroneous, just not fully accurate.

 

 

i do agree -- you've got to get them to understand the point you are trying to make, however -- my advice would be to try to do that as briefly as possible -- hopefully, a doc letter will have them get to 'oh yes, right, he's eligible' and then get on to what he needs. i really feel i made a big mistake last year in having them see me as an expert and feeling they weren't sure of the disorder and what to do -- this year, our school has taken a different attitude in yes, they may not know of this specific disorder -- but they can see behaviors and learning issues that they have familiarity with and know what to do about. so, it's much more successful in looking at ds, his needs and how best to meet them, rather than 'wow, we've never heard of that and aren't sure what to do.'

 

 

Smartyjones - Thank you for the link to the NIMH article - I did not have it. Also, I appreciate your perspective because I feel what happened to you is starting to happen to me. I will try to get things moving with getting his needs met and less about explaining PANDAS. Sometimes we just need someone to tell us to try a different approach - You did that for me. Thanks!

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I think many of us have an unusal battle. Because of the nature of this condition - theoretically they are fine when they're healthy, lunatics when they're sick (and I mean that nicely :D ) , leads many in school to believe it's behavioral. Put that on top of the fact that lots of our kids have good grades, gifted, etc...and are usually very well behaved, and you get the "they know better than to behave like that" issue too.

 

I've always tried to take the behavioral aspect out of it when describing PANDAS for the school. It's rheumatic fever of the brain - period. Brain gets inflammed - period. When brain is inflammed these are the "symptoms" that present - period. I purposely try to avoid using the word "behavior". The OCD, ADHD, ODD, Tourettes are "symptoms" of the disease - just like fever, sore throat are typical "symptoms" of strep. From there, you just need to focus on how it impacts them academically because that's all they care about (learned that from deailng with my youngest).

 

My youngest is 5, was dx at 2, and transitioned into the school district at 3 from Early Steps - so we have his IEP in place for when he starts kindergarten next year. But considering he's already reading WAY beyond a 1st grade level, doing complex math etc...we expect to have this same problem with him over the years. His current teacher and I have already discussed the appropriateness of adding a behavior plan to his IEP - and it will likely happen next year for K; but as a tool to help him self-regulate. A reminder of what he's supposed to be doing vs. consequences for anxiety.

 

He has spent 2 1/2 years in a special ed pre-K where he has THRIVED and will start K at a charter school with my daughter next year When she was dx, our previous experiences dealing with his IEP helped us deal with her school - and we had very little problems. This year, they already told me there are 2 other kids with PANDAS at the school other than my daughter - and it was the information WE provided to them about her that helped them through the proccess with other families.

 

I do still worry - on a scale of 1-10; my son is a 10 when he's symptomatic while my daughter, at her worst is maybe a 4-5. They have no idea what's in store for them when Hurricane Broderick hits next year!

 

airial95 - I like your suggestions on how to present symptoms in a matter of fact way and your idea of being to the point about what he needs to be successful academically. I am glad your little guy has got a great plan in place. I am sorry you are having to deal with 2 children with this. Thanks for the info on your son's plan - I like the self regulation wording. The teacher has done a great job of making modifications already for my ds, we just need to get it all into a 504. I feel more confident about getting this plan done now that I have some great suggestions. Thank you.

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    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


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