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Do I need to pull my DS15 out of school in order to get well?


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We have been advised by our doctor to not enroll my DS15 in high school this fall and postpone public high school until 2nd semester. Our doc says that being exposed to all the colds/viruses in a large school will just keep him in a flare as we try and get him well and calm/retrain his immune system. Our doctor also does not think he could manage more than a half day of school right now. Our school district only offers two hours of in home tutoring a week for kids who are too sick to go to school, which makes it near impossible to be home and stay up in school. I find this so maddening especially when I hear that some schools give two hours per day! We have a small academy where he could take 4 core classes and at least not get too behind and then hopefully start second semester in January.

 

Does this seem extreme and like an over protective plan?? Do I really need to isolate my DS so much? Would love to hear your experience with recovery and school.

 

Thanks!

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I commend your doctor for this! I have homeschooled my daughter for 3 years now, and she is doing so well. She was constantly sick when at school, and it was a vicious cycle. She goes for several months now without being sick. There is no doubt in my mind that this has been a huge factor in her recovery.

 

It was scary at first, but now we both love it. What state do you live in? Find a homeschool group in your area and ask them about online schools and other resources. They are such a kind and helpful group of people. There are online schools too. Start Googling! You can do it! It's worth the effort!

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I personally think that if you can give him a semester's worth of healing time . . . and a lower-pressure academic environment in which to get tackle some, if not all, the age-appropriate work he can manage . . . it will be of great help to you all. And it's not necessarily isolating him; he could still have friends over, see the school tutor once each week, maybe attend a small extra-curricular club meeting now and then, if he's up to it.

 

Maybe there's a home schooling co-op type group in your community that you could hook up with? We have one near us, and it was a great opportunity for some social interaction and learning in a small group setting, rather than the large junior high and/or high schools. Some of these are set up for the participants to attend a group lecture or "master class," or just go on a field trip, focused around some learning objective.

 

In order for your son to have home schooling (even for the scant two hours each week), do you have or will you be getting an IEP? If so, perhaps you could work into that some additional accommodations that will further support his ability to "keep up" so that returning to school eventually won't feel like a giant leap. We home-schooled, with the help of a once-per-week tutor, for about 4 months when our DS was in his worst shape, and having an accommodation for "modify assignments and assessments for quantity, not quality" really helped. Some kids don't need all the repetitive drilling (math, spelling, etc.) that can come with some cirriculums, so cutting out a good bit of that "busy work," provided DS could demonstrate his mastery of the concepts doing fewer homework problems, etc., really helped. Unfortunately, sometimes, I think a lot of the "school work" our kids are asked to do is more about keeping them busy and quiet than it is necessarily giving them the opportunity to learn something new, so if you're able to whittle down the work he's "missing" to the true kernels of the cirriculums, then, if he's ready and willing to go back to the conventional classroom at some point, he'll likely feel less "behind" overall.

 

Good luck to you!

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  • 2 weeks later...

This is exactly the dilemma we are struggling with....neuro has recommended homeschool for DD10, and I am beginning to think it would help DD8 too. Dr was v blunt with us--said either we could pull DD10 out of school, or we would prob need ivig to turn her around. I am really really torn. We love our school--has been great with accommodations, has built confidence in our kids, teachers are great, learning opportunities are hands-on and real, etc. etc. Pretty much the only problem with it is that it is filled with 600 other kids who get sick, cough, sneeze, etc. I also work full time and I think educationally, she would probably learn more in school--but we're not sure at what cost. Would likewise love to hear any ideas/ responses from others....especially now that we have about 2 weeks to make the decision before school starts!

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We decided to homeschool before we knew about PANDAS, so I am obviously biased when I state that they learn more through home education and unschooling. That said I think the first goal should be treating PANDAS. If PANDAS continues untreated so many things are difficult to impossible - happiness, good social relationships, education, career.

 

You may need to consider pulling them from other activities as well or at least monitoring the health of kids they are exposed to. We did try to integrate them into home school co-ops, extra-curricular activities and sports for both life-enriching and social reasons. Unfortunately they caught coxsackie about 2 months post-IVIG and then were exposed to strep 4 months post-IVIG (but did not appear to get sick) and have been on the decline since that exposure. As we are likely going to need another round of IVIG we will try to be more careful with exposure, particularly for the first 6 months. It is very difficult for them to be robbed of these activities and friendships.

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I am in this boat right now... I'm not so concerned about the germs at school (although reading through your posts maybe now I am) but about her ability to learn and be stress-free. During her good days, she is an advanced student going into the 7th grade but on bad days right now she is a four-year old that can barely dress herself. How can she succeed in school like this? But how do we keep her moving somewhat forward on the good days?

 

I need to call our school to see what the options are and look at homeschooling. I know there are some very active co-ops in our area, but I'm just so not the homeschool type. Although I might be coming to realize that might be our only option.

 

Just one more reason to really hate this disorder. I really really want our lives back.

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My daughter fortunately is 21 now got PANS at 19. She had flair #3 Feb 6, 2015 from her brothers flu virus. No way she could work. She STILL is not well.

we did IVIG April 24 which MADE HER WORSE.

I know its hard but the less exposure the better.

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Without knowing the specifics of your son's illness, it's hard to answer your question about whether keeping him out of high school is overly extreme. In large part, the answer depends on his level of anxiety along with his internal motivation to achieve academically. In home instruction is rarely as rigorous as what's offered in the classroom, and it fails to provide the social interactions that many teenagers need and enjoy. In the absence of extreme health or psychiatric limitations, it would seem that bowing out completely would not likely be in any child's best interest.

With regard to what you've been offered, two hours of in home tutoring per week is the standard for general education students who experience temporary setbacks, such as a short term hospitalization or sports injury that prevent them from going to school. It is not meant to be a longterm substitute for classroom learning.

If your son already has an IEP or 504 plan then he is a member of a protected class and legally entitled to a fair and appropriate public education (FAPE) at the districts expense. By law the school is obligated to provide whatever number of tutoring hours is required so he can keep up with his classmates and make "effective progress."

If your son does not currently have an ed plan, the first step would be to have him be identified so that he is protected under the law. Depending on his learning needs, you would need to request an evaluation meeting in writing with either the 504 coordinator or the special education department. There may be forms that you are required to fill out for this purpose. Directions for how to go about this should be in the Student/Parent Handbook along with the federally mandated timeframes in which the process needs to unfold.

 

Once identified as a student with special needs, you will be in a position to advocate for either a hybrid schedule (part-time schooling/part time tutoring or virtual school) or total in home instruction, depending on which you decide best meets his needs.

I hope this is helpful.

Edited by mommybee
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