Hilltopmom Posted August 1, 2020 Share Posted August 1, 2020 (edited) Can any parents with PANS kids let me know what guidance you have gotten from their doctors about their risks re COVID? Our ped isn’t giving us guidance and we don’t have a PANS dr. We already plan to homeschool again this year, but I teach public school (in an area with low cases) and will be back in the classroom. Trying to decide if I should request any extra accommodations based on her PANS (I believe they are only going to provide shields, small group barriers, better masks) to teachers who request due to health reasons. But if it’s ADA it would have to be my health issues, not my kids, I think. My school is NOT going to have students wear masks in the classrooms because seats will be 6ft apart (breathing the same air all day). We will have about 10 kids per room but I’m the special Ed teacher and will have 2 classrooms to cover with 3 adults in each room. (I’m in upstate NY where our numbers are low and our Gov will shut us down if they go up) Anyways, what’s the PANS community thoughts on COVID risks for our kids? (I’m not in any PANS parent groups so asking here. Thanks) Her PANS episode was a scary neurological episode (stopped being able to speak) after the regular flu a few years ago and she never returned to baseline. Edited August 1, 2020 by Hilltopmom 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted August 1, 2020 Share Posted August 1, 2020 I have not gotten any specific guidance from our PANS/PANDAS doctor, but I'll check their website to see if there is any info there. Given the neuro effects of this in some people, it scares me for sure with our PANDAS/PANS kid. 1 1 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted August 1, 2020 Share Posted August 1, 2020 2 hours ago, Hilltopmom said: Her PANS episode was a scary neurological episode (stopped being able to speak) after the regular flu a few years ago and she never returned to baseline. Whoa, can I totally rabbit here? Is loss of speech with vaccines or exposures considered PANS? Dd's problems with speech dropping started after (something in that vein) and I didn't realize it fell under PANS. I really don't know on the COVID. I know I'm pretty stressed about it because she's supposed to be returning to campus in two weeks. So she will be home and it's you getting exposed? Well it seems like the data that it's less likely to happen by the kids means it's MORE likely going to happen from the adults, like meetings or break rooms. So as long as the population you're teaching is young, I would protect most around the adults and always assume they're contagious. Quote Link to comment Share on other sites More sharing options...
kbutton Posted August 1, 2020 Share Posted August 1, 2020 1 hour ago, PeterPan said: So as long as the population you're teaching is young, I would protect most around the adults and always assume they're contagious. I would not assume this. Studies are suggesting otherwise. This article mentions that kids have MORE virus, and it mentions another study that showed that virus retrieved from kids can be infectious (unlike RNA found on surfaces after a long enough time has passed). https://www.nytimes.com/2020/07/30/health/coronavirus-children.html 1 1 Quote Link to comment Share on other sites More sharing options...
Hilltopmom Posted August 1, 2020 Author Share Posted August 1, 2020 My students are 8-10 & I certainly don’t trust their families to have been being careful at all! I work in a room with 2 other adults all day as well and neither students nor adults need to wear masks “as long as there is social distancing”. Ugh. 1 Quote Link to comment Share on other sites More sharing options...
Hilltopmom Posted August 1, 2020 Author Share Posted August 1, 2020 2 hours ago, PeterPan said: Whoa, can I totally rabbit here? Is loss of speech with vaccines or exposures considered PANS? Dd's problems with speech dropping started after (something in that vein) and I didn't realize it fell under PANS. I really don't know on the COVID. I know I'm pretty stressed about it because she's supposed to be returning to campus in two weeks. So she will be home and it's you getting exposed? Well it seems like the data that it's less likely to happen by the kids means it's MORE likely going to happen from the adults, like meetings or break rooms. So as long as the population you're teaching is young, I would protect most around the adults and always assume they're contagious. I don’t know about vaccines and PANS, but yeah, she had the flu, laid in bed for 2 weeks and then stopped being able to speak in sentences (plus the typical PANS OCD,etc). She was almost 5. Neuro diagnosed PANS. (Not strep related, so PANS as opposed to PANDAS). it was shockingly abrupt change 1 3 Quote Link to comment Share on other sites More sharing options...
MercyA Posted August 1, 2020 Share Posted August 1, 2020 (edited) My mom developed OCD after strep almost 60 years ago. She of course didn't realize the connection until after research on PANS started coming out. She still has a severe worsening of symptoms (now including depression as well as anxiety) after any virus. 😞 I asked my DH about this, since he has been following all the science closely. He said he hasn't seen any evidence that COVID will be worse than any other virus in this regard. Edited August 1, 2020 by MercyA 1 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted August 1, 2020 Share Posted August 1, 2020 1 hour ago, Hilltopmom said: PANS So what is the basic thought process on underlying causes of PANS? Quote Link to comment Share on other sites More sharing options...
PeterPan Posted August 1, 2020 Share Posted August 1, 2020 57 minutes ago, MercyA said: She still has a severe worsening of symptoms (now including depression as well as anxiety) after any virus. Is there a treatment? Quote Link to comment Share on other sites More sharing options...
ktgrok Posted August 1, 2020 Share Posted August 1, 2020 7 minutes ago, PeterPan said: So what is the basic thought process on underlying causes of PANS? Autoimmune based inflammation of the brain. 6 minutes ago, PeterPan said: Is there a treatment? Some...but not a cure. Antibiotics, specific ones, seem to help with the inflammation. Ibuprofen helps short term in a flare. Some kids get IVIG treatment to try to overwhelm their own misfiring immune system with a different set of antibodies. 1 1 1 Quote Link to comment Share on other sites More sharing options...
MercyA Posted August 1, 2020 Share Posted August 1, 2020 2 hours ago, PeterPan said: Is there a treatment? Ibuprofen helps some, I think. And more mental health meds as needed. 1 Quote Link to comment Share on other sites More sharing options...
Noreen Claire Posted August 1, 2020 Share Posted August 1, 2020 3 hours ago, PeterPan said: Is there a treatment? We use ibuprofen and antihistamines for him during flare-ups, to help bring down the inflammation. For me, I use copious amounts of chocolate, ice cream, and alcohol. 1 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted August 1, 2020 Share Posted August 1, 2020 3 minutes ago, Noreen Claire said: We use ibuprofen and antihistamines for him during flare-ups, to help bring down the inflammation. For me, I use copious amounts of chocolate, ice cream, and alcohol. this, exactly. And for us, if there was a chance of bacterial infection, we also do a month of antibiotics. High doses of augmentin really really help, but no one wants to prescribe the high doses. 1 Quote Link to comment Share on other sites More sharing options...
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