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Hi all,



What are people doing for school for kids/teens who are severely ill? And if in school, how do they handle the cognitive challenges and fatigue that go along with treatment?


My son has not done schooling since April, and before that was homeschooled. Homeschooling was good for the health issues, but he wasn't happy. He prefers to be in school but at this point doesn't feel like he could keep up with the demands.


We are considering having him try and attend an LD school (school for kids who are learning delayed/disabled) , and I am thinking of trying to legally maintain homeschooling status so he doesn't have to meet their required seat hours.


How are others coping with school?

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We did K12.com which is a public and private school. Only some states offer the public school option. It worked well because of the flexibility in doing work on the weekends and any time my son felt good enough. He is still working on his school all this summer to get caught up with his grade. At the 7th grade level, 25% of his assignments are on the computer and the rest are out of books etc. If public school, they provide the books and some supplies (i.e., science, art) by sending them to you in the mail. As they increase in grade, the percentage of work on-line increases.


He was required to put in 25 hours/week and we worked towards that but sometimes were a bit short. He did have a 504 plan set up with the school,as well, which helped them be able to be more flexible with us as well. At one point his dr. recommended taking a month off and so we provided the school with a note from her and they said 'ok'. I did have my son continue to do a bit of the school work though - thank goodness.


Since he is starting to feel better, we are hoping he can return to a public school this Fall but not sure yet.

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I feel a bit different about education than most main stream parents, but I thank God we were already homeschooling when PANDAS hit our home. My feeling is and always has been that children learn naturally when given the chance to learn what they are interested in, in a supportive environment. We have never pushed education onto our kids but we act as facilitators in helping them to further their interests, and they learn just fine as a side effect of this. Human beings are naturally curious.


My 14 yo dd has been unable to read a book for over 2 years.(unless in the company of others) She has been unable to write much as well, except on the computer and texting. (she was severely disabled from pandas/lyme and these are things that have not completely resolved yet)


So, last year, she decided to take some classes at the high school for the first time ever. She was young for her grade, having her birthday only a few days before the cutoff. She had not taken any formal classes her entire life, but had learned as a result of following her interests in a rich caring environment. She took 3 classes and during that time she missed several weeks due to leaving the state for multiple IVIG. She had the complications of migraines, ocd, tics, etc. She scored in all 3 classes in the high 80's.


My point is that after two years of being unable to read and write, not having a formal education like most kids, and being somewhat disabled during the time of the classes, as well as missing quite a few, and on top of that, being bored by the end of each sememster and not really feeling like trying....she managed to do quite well.


I felt confident that she was a bright kid and could fit right in, but it was nice to have it validated by having her try public school on her own terms. The school was actually happy to have her because they get tax dollars for her attendence and they were all quite nice to her. She made one good friend too. They never bitched about her attendence either. She was late a lot due to ocd. No one ever even mentioned it to me. She was registerd as a homeschooler, so it took the pressure off the school, I think.


When she took the first class, I told her teachers she was ill (I had one of her teachers when I was there) and I told them a little about PANDAS, but I never formally told the school. She was in mainstream classes.


I personally feel that you can "homeschool" your kids and just let them get well and they will not miss out on enough to set them back. Keep their environment rich and help them follow their interests to the best of their abilities. What more can you do? Most states make homeschooling quite easy. It's best to ask people who have homeschooled for years the easiest way to go about it. If your state has an unschooling list, they are likely to know the most relaxed teachers if you need a portfolio review or testing, like in my state. Different teachers have different educational philosophies and you can likely find one that matches your own.


Dd was glad to have tried public school but at this time has no plans to go back this year.

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Well, I am not sure myself how 1st grade will go with my dd, which starts in 15 days.

Last year, in K, I was able to put a 504 (medical) in place with our school, with a letter from our treating Dr. for Pandas- the letter explained the up and down nature of the illness, etc.

We had a 2nd IVIG done last Spring, and after that one, I pulled her from the last 6 weeks of K, because I didn't want her exposed to strep again- our public school was amazing, and sent a tutor to come into our home for one on one teaching, and she passed/graduated K. I am unable to homeschool her- she won't work for me like she will with a teacher- it's that holding it together for others part.

However, now we are looking into lyme, and with that very likely treatment, not sure how she will be able to deal with full day school.

What can we do? The child has health issues- it is difficult and sad, since she does well academically, and I feel the social aspect is very helpful for my anxious girl.

But getting her health in order is the most important thing.

Hang in there. My heart is heavy too with it. I found putting a medical waiver of sorts (the 504) and having the school 'aware' took pressure off.

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