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My 10 year old son started having dysautonomia symptoms in February and was diagnosed with pots in April. He only made it back for a couple days during the last nine weeks of 4th grade. ( Also his 1 st year in public school) 

So now as August approaches we are starting the decision of going back to

homeschool- easy in some ways since I have homeschooled for 16 years  or

public school -he would really like to be there since his brother is moving to college and home will be lonely, but we are both concerned about how bad it would make his symptoms even if we do only a few afternoons a week.

He has just started doing things besides doctor appointments in the last few weeks. He made it to church a few times, had a friend over and went to a family get together...just simple things. He does seem better than a month ago, but it's frustrating to see him do so little and pay for it in exhaustion and physical pain. It makes me concerned that traveling and keeping pace with even a little public school will only slow down his recovery. 

His main symptoms now are extreme fatigue, headache, brain fog, trouble getting to sleep, body aches, poor memory  and of course trycardia.

Any words of advise from those who have been down this road before us would be appreciated.

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Hi there!

I am happy to say that I've graduated both of my daughters, teaching them from the beginning to the end.  It can be done, and I also know about being the only one left at home to do school.  My oldest had graduated, and my youngest was still doing school a year and half later.  It was a little hard for her, as they had always been together doing their homework and such.  But, I do know that she would have never been able to make it at a brick and mortar school with EDS, Dysautonomia (POTS).  Each day is too unpredictable, public school would not have been an ideal place for a kid with a feeding tube (she's had 2, and, thankfully, they are gone now).  I would suggest homeschool that has a support group.  We had "class day" where the kids got together once a week for a class.  It allows them to be with other kids, gives mom a break, but if he wasn't able to go, no problem.  You just don't go.  It would tack negative points away from your school record.  I was always one of those that never thought it wasn't possible.  We did Chemistry at home, British Literature, Government, Economics, a fantastic Consumer Math that all high school kids should have to take before graduating.  Oh, the possibilities are endless.  If you'd like to DM me, we can talk more.  One more thing, we took our school work with us to doctor appointments, so we didn't lose school days. 

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Like I said homeschooling would be the easy choice. I still have a library in my garage, but since he has homeschooled 4 previous years while his brother was in high school he knows how lonely that can be. We were also in a support group for several years, but since most of their activities were field trips and they are thirty miles away, that's just not a good option. Some things about homeschooling in the country are wonderful. Our boys had several acres of land to roam around on. But you are also pretty isolated.

Hoping we can work out a very light load for him, but don't know how flexible the school will be. He was very determined to go back at first, but has been less confident since he started trying to get out and do things.

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So sorry for the location challenge.  There are pros and cons to everything, it seems.  We are city people, but haven't gotten the chance to take a whole lot of advantage of it because of their health.  We are actually having to go back to Stanford next week, and as ill as my daughter is, she's actually looking forward to it because it's a trip.  The Silicon Valley can be interesting at times.  Hope you can work out a happy medium with the school.  Best wishes to you!

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Hi there, welcome to DINET,

Here is some school information for you, I'm not sure if you are familiar with it: A 504 has to be obtained for him. Since your child has been diagnosed with POTS/Dysautonomia, legally by federal law the public school system is required to provide him with an educational plan that that is appropriate and least restrictive, due to the fact that he has a chronic condition. This provides him protection due to his medical condition, like issues related to the fatigue you mentioned - perhaps he can only handle classes for half of the day, cannot attend physical education classes, has to have permission from his doctors to carry around gatoraid and water, snacks, etc. ,  Allowing him to leave a few minutes before the next class would start so it could allow for extra time to get there, Teacher's can start "systems" for missed for school work if there are extended absences - perhaps hiring a routine tutor so he doesn't fall far behind, educating the school nurse on pots and allowing him to come take breaks when needed.   There are fantastic, informative articles and videos on this topic written by Dr. Blair Grubb and his NP, Beverly Karabin, POTS guru's, that might be something really worth looking into. I believe the series is available on the Dysautonomia Youth Website, you can also find a lot of information there, too. Take care!

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  • 2 weeks later...

My son has done online school since 6th grade. He does K12 online. It's free and they send all the materials needed. You just need a computer and internet. It was the best decision we ever made. His POTS was severe and he had an underlying condition. I am a teacher myself and had to quit my job to stay home with him. My son needed around the clock care and we also had to fit in physical therapy 3-4 times a week. With online school, he could do his school work anytime he felt like it and it he was having really bad days, he could back off. He also had an IEP and a team of teachers that had medical reports from his doctor to explain his medical condition.If we had a problem, I could always get ahold of his lead teacher and get more accommodations if needed. Please feel free to pm if you have more questions.

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