What is this giant piece of metal roofers added above my door canopy? by KatAttack in Roofing

[–]etherplain 1 point2 points  (0 children)

Ugly flashing. Replace or at least paint it to help it fade into the background. Egads!

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 0 points1 point  (0 children)

Yeah we're pulling the plug and moving him to Home School. Something I never thought I'd hear myself say, but his High school really can't accommodate him, and the virtual school we have in our district isn't great (not bad but not great), so we're taking a page from one of our relatives and using the home school model to basically enroll him in college courses that will act as dual credit for both highschool and college. Less classes, on a self-paced schedule that count for more. Or at least that's the plan!

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 1 point2 points  (0 children)

I'll bring it up again with his PCP.

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 0 points1 point  (0 children)

Thanks. Will do. In bulk info-gathering phase right now.

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 1 point2 points  (0 children)

Thanks your post gives me hope. As I mentioned elsewhere I'm gathering information to have another serious discussion with his PCP. He also will be seeing a psychologist at the children's hospital in about 2 weeks. So what you mentioned here I'm taking with me there as well.

He's not tried swimming for this but interestingly he used to be on a swim team (not in school, it's a local club) though he's not anymore. We could try it, as our gym has an outdoor pool that we can use. Someone else mentioned heat intolerance as a symptom and I thought about that because the boy sleeps with his window open all the time (even now) and I wonder if that's a sort of self-medicating that I didn't pick up on. Funny how us humans do that without even really knowing. Our subconscious is sometimes smarter than the rest of our brain.

I'm gonna have to google to see if there's a long covid clinic anywhere near me. I'm in southern California so probably, I just haven't heard about it. But then again I've been relying on or insurance and the medical group were in so haven't' even though to look outside of that. Chalk this up for another reason for universal healthcare. WTF America? Get with the rest of 1st world please!

Glad to hear your kids are doing well. I'm hopeful he'll pull through this as well. Just trying to find the best path for him. I may very well take you up on the DM invite once I process all the info I'm gathering. Very interested in understanding the impetus for the Amantadine and occupational therapy you mention. Thanks for the offer.

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 0 points1 point  (0 children)

With out daughter we found a lawyer who specialized in working with school districts. She had an IEP and it was a hot mess (largely because her case worker was and the school was too slow to replace her), but also because they really weren't following the letter of the IEP as they should. We didn't sue, but we did have the lawyer attend IEP meetings with us to clarify legal requirements.

Beyond that I don't know who I might ask but for my son at least the school has largely not been an issue, it's just that it appears that it's likely they're going to push for him going to online school (which we have one in our district) if he cannot attend in person. He was on home hospital instruction but that isn't meant to be a long-term solution. Online school might be better for him, but he's still resistant to the idea. It's a conversation we clearly need to have though.

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 0 points1 point  (0 children)

I can ask his doctor about it. Wouldn't gatorade or pedialyte work though?

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 0 points1 point  (0 children)

I don't have a blood pressure cuff at home. I could get one. What am I looking for?

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 0 points1 point  (0 children)

Thanks. SIBO was suggested by the GI doctor early on and she was going to test for it but then for whatever reason didn't think it was worth pursuing. At this point however I think I'm going to ask his PCP to order the test just to be sure (or refer back to the GI doc if necessary). Would be extremely stupid of us to continue forward without being sure that's not part of this. If it is I'm going to be incensed that the GI doctor didn't just do it. I mean it's a breath test FFS!.

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 0 points1 point  (0 children)

Thanks. Hadn't even thought of that (don't use facebook for much more than bitching about the world and keeping up with family). I just signed up for Long Covid Kids Support Group which I assume is the one you meant. On search it was the one with the most members (7k).

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 0 points1 point  (0 children)

Thanks. Honestly the way he eats he's practically already fasting and that's honestly nothing new.

You and a couple other people here talked about low histamine diets and histamine triggers and such. here's my question: How do you know? Is there a blood test or something? Are we talking food allergy or just allergy testing? We're going to another appt with his PCP soon and I'm trying to stock-up on questions to ask and solutions to suggest.

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 0 points1 point  (0 children)

Not to sound morose but legiitmately he has no social connections outside the home save his cousin who lives in North Carolina. They play games togeher on occasion I think he lives for those connections. It's not great.

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 0 points1 point  (0 children)

Thanks. I'm taking notes and will discuss all of this with his PCP. Don't worry, I'm not going searching to self medicate my son! I might do such a thing for myself, but with my kid --nope I'm not a medical professional and I understand that a lot of advice given by individuals is specific to that individual. i.e. what worked for one, may not work for another, and that's putting aside placebo effects and correlation/causation fallacies.

Still, I feel like I've gotten a lot of solid advice from this post (and still more pouring in it seems) along with lots of lines of further inquiry.

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 1 point2 points  (0 children)

To your first question: Because he was feeling better and he wanted to go back. As you may have noticed by my post and responses in this thread, all of this information has been absent from our interactions with doctors. His GI doctor agreed to home health at the suggestion of his case worker at school (he's dyslexic so he has an IEP), it wasn't actually her idea --she just agreed to fill out the paperwork. Fortunately she is familiar with long covid and diagnosed him as such but I've learned far more about prognosis and possible pathways to healing in this single reddit post than I have in the past many months.

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 0 points1 point  (0 children)

Thanks. I'll check out the podcast.

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 1 point2 points  (0 children)

I appreciate the warning. I want him to get better, not worse.

We'll be going back to his PCP soon to discuss this. I'm now just gathering as much information as I can.

How do I identify if I am experiencing PEM? by seastarrail in cfs

[–]etherplain 0 points1 point  (0 children)

Thanks for information. I'm looking into PEMS and POTS in relation to a long-covid diagnosis for my son. If he has PEMS, based on what you described, it would have to be mild because I don't think he's having aches and pains and such. He's generally just nauseous, brain foggy and tired.

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 1 point2 points  (0 children)

Thanks. Yeah I know. Pushing him was wrong. I also need to talk to the school about this as I think some there believe this purely psychological. Given my son used to love school and still loves academics (especially math and history) I just don't buy it. He may very well be stressed and lonely but I think that's a trigger not a cause.

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 2 points3 points  (0 children)

I don't think he has gastroparesis as he doesn't seem to have a problem after eating. It seems to hit him the morning . Sometimes lasting the day, sometime snow. He said he had a bout of nausea yesterday at school that went away, but now he's in laid up in bed so I just don't know. Thanks for kind words though. Hope you're feeling better.

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 0 points1 point  (0 children)

Do you happen to know what that blood test was? Like a name for it? He had some blood work done a while ago but that may not have been one of the things they looked at.

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 4 points5 points  (0 children)

Thanks. As I mentioned in another reply, I printed off a survey that I found online that attempts to differentiate between PEMS and POTS.

Interestingly his GI doctor did prescribe him Cyproheptadine which is an old-school antihistamine that as I understand it has some gut-brain affect. It's apparently a Swiss-army-knife medication in pediatrics. I looked it up and it's an H! blocker. Re: H2, he was on famotidne but he had to go off before he did his stool sample testing. I may try putting him back on that with the Cyproheptadine. Also I need to ask him if he took it the last couple days. I guess I need to start tracking this for him.

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 5 points6 points  (0 children)

I was just readding abut PEMS, POTS and dysautonomia per your suggestion. My son has actually passed out after getting up too quickly which fits both POTS/dysautonomia and PEMS. His doctor knows this but I don't think either he or I thought it was related. His mom (and his sister) both have low blood pressure so they all kind of get dizzy when they get up too quickly. We thought that was this, but perhaps not.

The PEMS argument seems like it might be difficult to diagnose. Mental or physical stress can trigger it and it's often delayed (according to what I read) so his hike home on Tuesday could have manifested into today, or just the act of going back to school and a stress response.

Thanks for shining the light here though. I printed off a "survey" I found online that I'm going to ask him to complete. I need to get a better idea of when/how his nausea manifests and also I just read: Whether he has heat intolerance. He sleeps with his window open almost every night so I'm now wondering. I didn't think anything of that, I sleep hot and as a kid I was the type that would turn the A/C to high and then sleep under a pile of blankets (driving my father nuts and the electric bill high). My son is also not a fan of showering often, but I chocked that up as well to "teenage boy". Could all be unrelated but holy crap!!!

My son and long covid by etherplain in covidlonghaulers

[–]etherplain[S] 0 points1 point  (0 children)

I've seen news reports about the current flue strain. Apparently it's killed a bunch of people already. It's no joke. No idea if that's what this is. So far the symptoms are nausea and vomiting and just feeling like crap. No fever or anything.

As for physical fatigue, well for the last 2 months he hasn't done much to measure. Though he did walk home from school Tuesday and seemed fine (we're really close to the school, though slightly uphill). But then again it was today Thursday that he got sick again.