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Anyone have success gettin IEP for PANDAS


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I am wanting to get an IEP for my child. My son was diagnosed 4 yrs ago and I had to pull him out of the district because believe it or not even with information on PANDAS and DR. info given to the principal she took it upon herself to determine that my son was doing it deliberately (tics, etc) and decided if he continued he would be punished for it. Yes I did just say that, unreal huh?. Now my daughter has been diagnosed and is in the same district with the same principal and I want to get her an IEP. Otherwise I feel that she will continue to treat my child how she feels fit with no regards to her condition. Shes also a identified gifted student who started getting failing grades and major behavior problems yet this sent up no red flags and did not even warrant a parent teacher conference. Any help or information that you may have used would be greatly appreciated.

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I am wanting to get an IEP for my child. My son was diagnosed 4 yrs ago and I had to pull him out of the district because believe it or not even with information on PANDAS and DR. info given to the principal she took it upon herself to determine that my son was doing it deliberately (tics, etc) and decided if he continued he would be punished for it. Yes I did just say that, unreal huh?. Now my daughter has been diagnosed and is in the same district with the same principal and I want to get her an IEP. Otherwise I feel that she will continue to treat my child how she feels fit with no regards to her condition. Shes also a identified gifted student who started getting failing grades and major behavior problems yet this sent up no red flags and did not even warrant a parent teacher conference. Any help or information that you may have used would be greatly appreciated.

Generally, PANDAS will fall under the OHI (other health impaired) category for services. You, as a parent can request an evaluation for sped services. For information on your rights, check out wrightslaw.com. It may be easier and more appropriate, though, to get a 504 plan. A 504 plan is accommodations (like extra time on assignments, taking extra breaks, reduced workload)for staying in the regular classroom/curriculum. An IEP would be needed to engage SPED help, like therapies.

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I sent a certified letter requesting the evaluation and believe it or not, got a denial dated the same day they received my request. Tell me they had time to review my 20 pages of medical and comprehend PANDAS before making the decision. Again same principal.

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This is so frustrating. I cannot believe they are not looking at this as a true medical problem.

 

My son has missed all of February and March this year because the anxiety and panic was so bad. He is enrolled in a private school so I did not have any of this options available. We have had to pay for a private tutor and continue to pay tuition. I am seriously considering enrolling him in our public school so we have these options that you are referring to. I am shocked that they cannot understand this is real and these children are suffering.

 

Please keep us posted on what happens. The suffering you and your family have been going through is enormous then to have to deal with the school on top of it is terrible.

I hope through out this year they discover more and more information and can get the word out there.

 

Linda

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I sent a certified letter requesting the evaluation and believe it or not, got a denial dated the same day they received my request. Tell me they had time to review my 20 pages of medical and comprehend PANDAS before making the decision. Again same principal.

 

 

Get in touch with the Department of Ed in your state. They do not like to hear this kind of stuff. Getting someone at the state level to crack the whip may be what it takes. Federal funds are involved & the prospect of losing funds b/c someone isn't playing by the rules may be an incentive. The trouble with the 504 is that there isn't any oversight--who is in charge of keeping track the plan is carried out & followed. An IEP has TEETH. Do NOT give up. Dawn

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PANDAS just sucks on sooo many levels!! Road blocks at every step of the way! Finding the right Dr, travelling to the right Dr, paying OOP for services, fighting insurance for coverage and then fighting the school for services to boot, all on top of dealing with a dysfunctional child!! We can just hope and pray that in a few years down the road all our efforts haved paved the way for future kids to get treated properly and promptly! But I agree with Iowadawn, you need to circumvent this horrible principal who is neglectful at best, more like intentionally obstructive!

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Unfortunately, I think because PANDAS/PANS still suffers from this "controversial" tag hung around its metaphorical neck, we don't always have the necessary teeth to compell the schools to acknowledge, let alone, accommodate our kids based on the PANDAS "label."

 

Would it be possible, therefore, to move forward with acquiring your kids IEP services based upon their primary behavior set, like OCD or tics? I know . . . it's grating to have to "settle" for another, inaccurate label in order to get the school to hear you, but if the end goal is to get your child the services and accommodations they need, then perhaps the end justifies the means?

 

We originally got a 504 and the an IEP based on OCD, before even we knew we were dealing with PANDAS. Once the PANDAS was on the radar, I began educating the school about it, making sure to add PANDAS information to each IEP meeting, every form we filled out, etc. As a result, the school nurses began to take an interest and work with us to notify of strep in the schools, etc. But, let's face it. What concerns the school most, and what they have to contend with in the school setting most, is the behavior set . . . the anxiety, the acting out, the avoidance, the tics, etc. So, in my eyes, they don't need to wholly embrace PANDAS in order for them . . . or me . . . to do right by my child, at least in this arena.

 

Just another way to consider a next move . . . .

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Hi,

As a former teacher myself, I would go right to the superintendent. They can override the princpal's decision. I am not sure you will get him on the IEP, but your child should certainly get the 504 plan which would put in place some accommodations that you will have input in. Our son is on the 504 plan for medical reasons (pandas) and it has helped quite a bit. We meet with the principal, teacher and psychologist periodically to address new concerns or modify the plan based on current needs. We just needed to bring his diagnosis from his pandas doc to be Eligible for the plan. You have rights with this, and in my opinion I would contact the superintendent.

Best of luck! Keep us posted as I would like to see how it turns out for you.

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Sure! Each child will need different accommodations based on their needs and struggles, but here are some of the accommodations we together came up with for my 8 yo.

Seating near the teacher (less distractions)

Extra time to complete tasks

Simplify complex directions (teacher works one on one with him when possible)

Reduce homework

Modify assignments

Oral exams

Extra time for exams/study guides

Weekly progress reports

Check out (to make sure he has everything)

Ignore minor inappropriate behaviors

Hand sanitizer available to all students

Letter home if strep case

Option to do work on computer (when handwriting is an issue)

We are fortunate to have a very understanding teacher and principal so if a new need arises or something changes (as often does with pandas) we can call or email and come up with a solution, so there really are more accommodations that are done but not in writing as the need arises or isn't needed anymore.

Good luck! We have been very happy with the 504 plan.

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My son has an IEP just for pandas. His process was started automatically on his 3rd birthday since we got early screenings through the early steps program. His IEP placed him in a special Ed pre-k to help him primarily with the OCD in the classroom.

 

We had trouble with the placement at first b/c there the area sped coordinator for thedistrict couldn't get past the "if it only happens when he's sick, why does he need help?". (the irony thinking back on that after nearly 2 straight years of chronic strep...ONLY when he's sick my a$$! But I digress...)

 

Our documentation from Murphy didn't get into specifics of pandas - it just said Pandas, symptoms include OCD, tics, etc... It didnt get into too much of the autoimmune stuff so we focused on the symptoms.

 

We grudgingly allowed them initially to just provide a sped teacher in his daycare setting 2x a week, and we're supposed to re-evaluate after 6 months. 2weeks in the sped teacher called a conference to discuss strategies, and they were all surprised when I showed up ( I was notified of the meeting) and with a special Ed advocate in tow! Our follow up meeting was 1 month after the original and he's been doing great in the program since - I should also mention that the district screenings also have him as gifted, but how they could tell that in a 3 yr old at the time is beyond me.

 

We were lucky that we knew an advocate who could help us (she has since been hired by the district to oversee special Ed county wide!). Honestly, I don't think she said much at either meeting, but just her presence changed the attitude of the district significantly. They know you mean business then. Wrightslaw.com that someone mentioned already should have some advice on where to find an advocate.

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Thanks. My DS10, whose first PANDAS exacerbation ran from Jan- April 2011, and then began again September 2011 has also always been above grade level and in the gifted program until this year, when he just couldn't cope with the demands. He's getting mostly B's now in general ed (as opposed to A's pre-PANDAS in the GT program), but requires an extraordinary level of support at home with his homework. He is very anxious about going to school and is frequently tardy as a result, has lost virtually all executive functioning skills and has become very disorganized (he's unable to remember to bring his homework home and and unable to attend to a complex task for more than a few minutes, and during the worst of the exacerbation had largely illegible handwriting and was extremely resistant to doing any writing at all. The school was really great when the initial diagnosis was mood disorder (likely bipolar) and put lots of informal supports in place, but nothing in writing. They seem more hesitant to put the accommodations in writing in a formal 504 plan, especially since he's been doing much better over the last 2 months since Dr. B diagnosed him with PANDAS and started treating him successfully for it. I'm not sure how the 504 meeting will go, since they keep saying that he's doing well enough that they don't think we need to put the accommodations in writing. Without a truly extraordinary teacher and guidance counselor, this year would have been an unmitigated disaster for him, and his self-esteem has been very badly affected, especially after the tics became noticeable to his classmates. I'm worried about the 504 process, but am hoping for the best, since he's not failing academically this year. Next year will be a different story, with the additional organizational demands of middle school. I'm thinking of focusing more on the manifestations of this disorder (OCD, ADHD-behavior, emotional lability, anxiety) rather than the cause of the symptoms (PANDAS) when pursuing the 504 plan, but I'm not sure which approach will be more successful, especially now that he's suddenly functioning better again.

Anyway, thank you for the tips on the strategies and accommodations that you managed to have the school put in place. I'm hoping for the best.

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