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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

Lisa3

Is your PANS/PANDAS child homebound?

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Yes, my son started with school refusal in second grade. He missed from November till the end of the year. In fifth grade he missed a few months and since we had switched him to public they pushed the issue and actually locked him in a room, called the police, etc. Finally after having a para educator follow him around for months he decided to do it himself and had a good 1/2 year. Now we are in 7th grade. This is the first year we found out it was PANDAS and we are going after it with everything we have. School refusal started in October. We had PANDAS diagnosis in November with Dr. L, tonsils out in December, and are currently in Florida at the Rothman center program. I am hoping he will return to school when we get home in March. You are not alone but are ahead of the game with an early diagnosis. Good Luck.

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Thanks ladies, hugs to you all. We are going to take it slow and steady and start with homebound instruction, I also plan to call The Rothman center, because school refusal is going to be a big problem. All of your advice and encouragement is means a lot.

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Lilly in response to your question, we dealt with a private school before and they could not really help, limit resources. Now we are with PACyber and they have been awesome. Got him on a 504 plan within weeks.

 

I think everyone's experience has been different, private, public, homeschooling.

Sent you a pm.

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My DD12 has been homebound since last November. She has been unable to attend school and has received home tutoring. I have to admit that I have not been too concerned about school because we have been so wrapped up in her symptoms, school has been an afterthought. Now, looking forward to 7th grade, I have hired an educational advocate who pointed out that the hours she was granted through the 504 for tutoring were insufficient. (she couldn't complete them anyway because she was too sick) When I met with the principal in June, she told me that my DD would just be placed in 7th grade and not to worry about the work. I was put off by her dismissive attitude and decided that I have to be more pro-active. Therefore, I have requested a CSE to seek a classification of Other Help Impaired. The Dr. wrote the letter as Auto Immune Encephalopathy and stated it was medical illness, not a psychiatric illness. We are also requesting an inservice from a Pandas knowledgable medical professional for the teachers and staff. Hopefully, she will be able to attend a truncated day with her core classes midday and specials on either ends.

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