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

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kristin0713

homeschooling/schoolwork and pandas

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Hello,

I am newly dealing with (I think) PANDAS/PANS in my 11 year old. We have an appointment with Dr. Jyonouchi for March 13th. In the meantime, I don't know how to handle her resistance to doing school work. We have always homeschooled and she is (was) a good student, strong reader and writer, on grade level for math. A few weeks ago, following influenza, she went into a serious depression, was withdrawn, wouldn't eat, and exhibited all sort of bizarre OCD behaviors and tics. She has mostly come out of that but is still showing some lingering OCD behaviors such as getting upset that I sharpened all the pencils, not able to choose a writing instrument, not able to choose a subject to work on or refusing to do any work. She had been more difficult this fall than in any prior year of homeschooling but I attributed that to adolescent attitiude before this extreme episode happened following the flu. Now I am not sure what is attitude and what is really hard for her or distressing her. Before she was sick, she would have read all day if I let her. Now she will barely read. She finished a typing program in the fall and is an excellent typer. Now she will not touch the computer. This is a huge regression from where she was in her independence with schoolwork. I don't know how to handle it. Do I sit next to her and do everything with her all day?? Or let her do less work/no work? It seems absurd when her third grade brother, at the other side of the table, is working through very subject one by one on his own. I just don't know what to do.

 

I think it goes without saying, but I will say it anyway to prevent the suggestion--I am NOT sending her to school. That would be extrememly traumatic to her at this point in her life especially with the PANDAS stuff going on. I need strategies to get her back to independence, or hope that this will not last forever.

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I think many/most kids experience a lot of trouble with schoolwork during the depths of -- and for some time following -- a PANDAS/PANs exacerbation. Our DS certainly did. He was not homeschooled as a rule, but we did switch to "homebound instruction" for about 3 months during his worst period (he was 12 at the time), which basically meant we got a teacher/tutor for a couple of hours each week, but most of the actual "schooling" got left to us, his parents. And even once he went back to school, having him be successful with homework assignments continued to be a struggle for a while.

 

One thing we did -- which you probably have already done, since you're homeschooling -- is try to weed out any/all "busy work" and keep things minimal in terms of volume and timed assignments which tend to increase stress. That way, he could focus his reduced mental and physical energy on verifying that he had mastery of the concepts, rather than that he could complete 20 repetitive math problems representing only a single concept.

 

Another thing we did periodically was, yes, sit by his side and provide coaching and refocusing when he struggled. Our DS would press down too hard with the pencil and break the lead, over-erase until there was a hole in the paper, etc. So we would sit with him, encourage him to take each step one at a time, and also encourage him to work the problem or answer the question out loud, verbally, along with writing it down. To explain it out loud to us in addition to getting the answer down on paper. Somehow, getting his verbal skills involved seemed to help him better order his thoughts without getting overwhelmed.

 

As for the reading, it's entirely possible she's finding it physically difficult to accomplish; inflammation and/or the OCD could be interfering, causing her to lose her place too frequently or feel as though she missed something and therefore has to reread, so she doesn't "get anywhere" in the end, and that increases frustration and anxiety. I would suggest maybe giving that up for a while and reading to her while she listens, rather than insisting she read on her own. As she improves, you can trade off, with you reading for a bit and her reading for a bit. With successful medical treatment, this should resolve and she'll go back to reading independently.

 

Those are the ideas I have for the moment. All the best with your doctor's appointment.

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Welcome to the forum and "welcome" to Pandas/Pans. I've unfortunately been at this for many years, first with my now recovered son and now with my daughter. I home schooled my daughter last year because her health was too precarious. Because it was only for one year and we always had the intention of returning to public school when she was able (for social reasons), our approach was probably different from yours. But I'll share what worked in case it helps.

 

I think the biggest thing that was helpful was mindset. Like your daughter, mine went from being very capable to being very handicapped in what she could handle in terms of workload and abilities. There's a medical reason for this - inflammation in the brain creates what's called a cytokine storm. There are many inflammatory cytokines that become elevated, but one - CaM Kinase II - is essential for learning and memory - from Wikipedia:

 

Ca2+ /calmodulin-dependent protein kinase II (CaM kinase II or CaMKII) is a serine/threonine-specific protein kinase that is regulated by the Ca2+
/calmodulin complex. CaMKII is involved in many signaling cascades and is thought to be an important mediator of learning and memory.[1] Misregulation of CaMKII is linked to Alzheimer’s disease, Angelman syndrome, and heart arrhythmia.[6

 

https://en.wikipedia.org/wiki/Ca2%2B/calmodulin-dependent_protein_kinase_II

 

We had bad days and worse days. Some days, she was able to learn in a fairly typical manner and other days, it was like teaching someone who had suffered a brain injury like a stroke or car accident. So the most important thing I did each day was to feel out where she was at, what she was capable of that day (and I also had to realize that every day might put us at a different starting place, and sometimes she'd have different capabilities throughout the day). Re-setting my expectations on the fly was essential. Otherwise, I'd expect too much, she'd stress over disappointing me and over her own sense of loss. Much like working with someone who's in rehab for a stroke - how frustrating it is to not be able to do things you've easily done for your whole life.

 

So forget about what she used to be able to do. Forget about what her brother can do. These are, for now, false points of reference. Start each lesson by assessing where she is at that moment and work with that. Do not show your frustration or expect more than she can give. That just blames her for something that's not in her control. You wouldn't do that to someone in rehab. You can push the way a cheerleader might - "hey, do you think you can do one more problem? No? Ok, take a break, you did a good job." But don't push with the thought that you can somehow push her back into being her old self (spoken from experience).

 

My daughter (12) reads at a 12th grade level. But there were many times she couldn't focus on the words on the page. But she could listen. So I'd read her social studies book to her while she doodled (drawing helped her stay focused, ironically, because it's something that relaxes her and it distracted her from her anxiety). Then she'd answer questions about what I'd just read to her. Sometimes she could write the answers herself, sometimes I could see from her horrible handwriting that I'd have to scribe what she verbally told me. We just had to be flexible. We did a lot of verbal discussions. We broke lessons up into very small chunks - sometimes as little as 5 minutes. Then we'd re-group 15 minutes later, or an hour later, or a day later. I had to let go of my scheduling, my goals, and just listen to her body and support her. The old her was temporarily gone. I had to teach the person who showed up that day and just help that person do her best for that day. Not easy for a Type A mom. But it's what she needed.

 

She is back in school this year, on a modified school day, with many absences (but for social reasons, she is adamant about being back in public). We often find ourselves having to do do school work at home to make up for missed days, and our approach is to do things in very small chunks. When she's feeling well, she takes pride in doing things independently. When she's in a bad place, I sit with her and coach her every step of the way. It's very much a teaching-as-if-you're-a-rehab-therapist approach.

 

The amazing thing is that once the body heals, the old child comes back. You don't need to worry about her getting lazy or developing bad habits. No one wants to get back to her old self more than she does. When she heals, she will return to the independent, curious child she's been.

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I do agree with not sending her to school - it would definitely be trauma.

 

On your question: " Do I sit next to her and do everything with her all day?? Or let her do less work/no work?"

When our son dropped violin lessons, schoolwork (like MomWithOCDSon
, he kept erasing until there were holes in the paper), stopped going outside, there was no way he would have been able to tolerate sitting next to him and doing everything with him all day. Doing less work (and modified work), and sometimes no work, was all he could handle.

On the "is this behavioral, or the disorder" question: it seems everyone with this disorder struggles with this question. There is a sense in which, of course, everything is behavioral because it is all expressed as behavior. The disorder is inextricably tied up with feelings, wants, needs, emotions. After seeing my really good kid regress so suddenly and so deeply, I could not blame his intent as if he was choosing to be stubborn. I really do feel that cutting the child some slack, and erring on the side of "its the disorder" is the appropriate way to go. They can't help it.

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We are in a tough spot ourselves with our twin 15 year old PANDAS/PANS girls. We really struggle with how much we've missed the boat behaviorally and possibly could have prevented some of this. We too home schooled and loved it. We lost both our girls to this horrid disease within 9 months of eachother, and we didn't know about PANDAS. Now three years later, we are in public high school, on an iep and still really struggling. This term we are having a hard time going to school at all. You start to wonder if this is a choice on their part,and at times it might be. It is hard. They have no friends, they don't understand a good deal of the work. They are 15 year old girls in 15 year old bodies functioning themselves at a 9 or 10 year old ability trying to fit in with these high school kids. Tough stuff but having them home is tough now too. I love home schooling, it was so much of who we were but that has all changed. We have rages (though we started homeopathy in Feb and that has really decreased but now they are sick so???) and moods,and honestly I am afraid at times. It IS hard to know what they can control. We never would have thought our family would be in this position...EVER. I think it is hard when they are in HS. How do you get through? They don't want to do much of anything. That all being said, I will not lose hope for recovery.

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I started to homeschool my son about a year and a half into PANDAS. I didn't know what was wrong but I knew he had seriously declined in school and needed to be home. The first year was crazy. He would run and hide in the closet if I asked him to do any math. He insisted he didn't know how to add or subtract multi-digit number even though I had been doing homework with him for years and knew he had been doing it since K. I was confused. That year I mostly "unschooled". He picked topics and we pursued those topics. We spent months reading about the civil war and watching videos on it. We took a trip to Philly and learned about Ben Franklin. We did little math. We only did math related to other studies and what he felt comfortable with. I let him tell me what he was capable of. He is much better now but still struggles with math and tics and concentration. He is in eighth and still homeschooling.

 

Eva

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