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My 9 year old son was recently diagnosed with PANDAS, though looking back I suspect he has had it for years. After countless hours of reading, I feel as though I could have written most of what I've read without having a name/title to put with it. He is currently being treated for a strep infection. Trying to get him to go to school this week is like being in battle I can't win. He has already missed tons of school. How do I explain to the school why he isn't coming? Has anyone else had problems of their child flat out refusing to go to school? I'm only a week into this and it is frustrating. People don't understand and think it is me allowing my child to walk all over me. I'm curious to hear your thoughts/experiences.

 

Thanks!

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there were very useful posts about how to deal with school. I would suggest you find them using search function.

there might some info among the pinned materials as well.

in general, you may want to write a letter to principal and teachers and try to explain what your child has. follow the letter example you'll find doing the search of the forum. Go slowly, step by step in trying to explain what your child has. some kids here have 504 and it might be useful to apply for it. just the mention of the 504 will help them understand how serious the condition is.

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My 8 yr old daughter had a few weeks where she would refuse to get ready and go to school.... I feel your pain. What's his "reason" for not wanting to go? Start with that. My daughter would lay on the floor, and say she was too tired, etc. It helped a little to make sure that she got to sleep early at night and was well rested in the morning. I tried getting her up earlier so she would have extra time at home in the morning, and also tried waking her up at the last minute, so that she wouldn't have any time to think about it and decide she didn't want to go..... both approaches had their pros and cons! :) The biggest motivator for her though, would be to explain that if she didn't get up and get going, that she was going to sit in her room all day with no tv, electronics, etc. When she didn't get ready one morning, she stayed in her room for almost 2 hours before she decided to get going to school. She was late a LOT for awhile, but as long as they get there at some point it doesn't count as an absence. Try giving him a choice-- get going, or do nothing all day. If he's complaining that he's tired, well, maybe he is. I know my daughter was very lathargic for awhile, especially at the peak of the flare.

 

Fortunately for us, after a few weeks of abx, most of those kind of episodes went away for our daughter. She still has severe ocd issues surrounding eating which we are battling every hour of every day, but she is happy and herself again, and for that I am grateful.

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We have had this as our number one issue. Our schools have been extremely supportive.

 

I would suggest immediately getting letters from both pandas doc and psychologist. You need diagnosis letter, and letter requesting 504. If you have a good psych- they can write a list of accommodations.

 

I would NOT talk to the school w/o documentation.

 

With treating pandas medically (steroids) and psychologically ( ERP) we have been successful with the school issues-

 

This is very common with pandas kids :-(

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and like Pr40 suggested, try talking to his teacher, the school psychologist, and the school nurse and explain the disease and his symptoms. I had several meetings with them, and if you use the "I need your help" approach in explaining things, people tend to be willing to help and sympathize. Play nice until nice doesn't work for you any more..... I say this because "nice" worked for me for quite awhile, but now that it's gone on for a few months, my daughter's school is wanting me to go for the 504 because apparently it's getting to be too much to ask for them to let her sit at a certain table in the cafeteria because of a sensory issue she has, or to drink her protein drink at her desk like the other kids do with their water, because she might spill it on the carpet and they're only allowed to have water.... people in schools don't like "different", unless you're officially labeled as such. Keep that in mind. But like I said, first play nice and ask for help-- it should help initially!! :)

 

Best wishes!

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Many of us have been in the same spot. My sons school refusal was related to every separation anxiety. I had age on my side. My son was 5 and I told him I'd stay at school and keep a watch on him but he wouldn't be able to see me because it was against school rules. He's had a few days this year of not wanting to go to school and flat out telling he wasn't going. I responded by telling him he would go, it's the law and if I had to call his dad home from work we would drag him into school. I got away with that because my son is doing pretty well.

 

You need to get documentation from professionals and then talk to the school. Many here have 540 plans. My son misses many days of school each year due to illness and a multitude of doctors appointments. Last year he missed 20 days of school. Because the school knows about his illness, I do not get truancy letters sent to me nor am I questioned in any way. I have tons of support from my sons principal.

 

Almost forgot the most important thing I wanted to say. You will need to get your mind in a place where you no longer care what others think about your parenting skills. Others are dealing with neurotypical, healthy kids. The rules don't apply when a child is ill.

Edited by nicklemama
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  • 4 weeks later...

My daughters school has been extremely supportive. My husband and I had a meeting with all the teacher, nurse, office staff and cafeteria employees. She had a letter from her psychiatrist and neurologist about PANDAS. We supplied them with educational material to help them understand some of the problems she was having. We also explained that it may be better and than worse again. We received a 504 about past an current symptoms she was experiencing.

 

We normally gave the counselor a heads up in the morning if symptoms were bad and what problems she was experiencing. They were excellent working with her and she never missed a day of school. There were times I did not know how the school handled her through out the day but our psychologist told us once she misses school it will be harder to get her back.

 

Each day we received a report of her behavior or any problems she experienced. It was so detailed it told us if she ate her lunch. She had lunch with the counselor at school once a week and also took self esteem classes at school.

 

I was nervous about explaining all this to them but they were so receptive and helpful. It also let me know how may services they had that I was not aware of. I am thankful for them every day. The best part is they just did her plan for next year and said they will still keep the 504 but she has not needed it this year.

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For what this is worth....do EVERYTHING you can to get your kiddo well. ABX is a start for Strep....but much more can be done with vitamins, minerals, boosting the immune system and natural mood adjustments and dealing with future infections. DAN protocol has worked quite well for our Kiddos. For us..... this "healing" approach......first... then many of the behavior stuff, anxiety and ADHD, sensory stuff faded greatly initially and more and more subtlety over time. There really has been constant improvement.

 

Our kiddos have never been on anything other than natural supplements except abx for acute infections.

 

For everyone, keep fighting and advocating for your kiddos. It can does and will get better.

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I teach in a restrictive setting public school for children with severe emotional and behavioral disabilities.

 

When we had onset I took videos and showed them to several school psychologists. Our most experienced, with clinical work in mental health, classified the behaviors as odd, bazaar, and strange. They aslo stated, "I would not know what to do with those behaviors."

 

When our daughter was dx with PANDAS I shared information with 3 school psychologists and several SELPA psychologists who have never heard of PANS or PANDAS. I do not think school psychs know how to deal with PANDAS/PANS.

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