This. This is driving me nuts. It’s from everyone, everywhere. This is good to know—the ones I know about have been more like paying for a college experience just to have a college experience from what a friend said when she looked into it. I don’t even really oppose the idea of an experience for the sake of it, but I really hated the insinuation that the existence of programs like that mean that I or another mom are selling their kids short! (And where are the dads in these webinars or at the school planning for college meetings?!?) I felt like she was simultaneously trying to be realistic but wash her hands of actual suggestions. It was just, “narrow your search.” I tried to ask if complex medical plus other stuff was going to make is strike out entirely, but I typed a contextual question into the box (so it immediately lost its meaning when she wasn’t reading it), and then I started having major tech problems. I understand not holding up a webinar for everyone, but I’ve been in FREE webinars with the same number of people (sometimes more), and they watch and wait for the person to rejoin and then make an effort to get the question answered. Yes. And he falls into the too functional for some things and uninterested in lots of things (rarer personality type) category or the medical issues become a problem too. As with most NLVD-ish kids, he has very high verbal strengths (relative to math) with serious language issues, and an article I have about 2e shows that this profile has the most difficult time at college. It didn’t address employment, but there are mainstream press articles on employment that college promoters apparently don’t read!

The idea that people with legit disabilities need to be held to a higher standard than NT people also grates on me. There is so much terrible communication at school that I don’t get to grade the teachers on in return.

It’s not content. It’s being too black and white and throwing out the baby with the bath water with communication. This is not an issue where people seem to gain insight via the school of hard knocks. He is getting some language intervention, but there is a total lack of imagination about how to implement it IRL situations even at school!!!

On a relevant side note: we need to do more language testing in our educational system!!! It’s not all dyslexia, social skills, and articulation, and it definitely isn’t fixed with executive functioning strategies. NVLD or SCD are probably both a better fit, but neither one brings the kind of support needed (one of his docs calls SCD “ASD without repetitive behaviors” and thinks the lack of support is a travesty), and one is a diagnosis that no longer exists. Even NVLD is a stretch as any potential lower score on non-verbal is almost certainly due to hypermobility and incomplete visual development, except for the language part. This kid is excellent at geometry and has always liberally used strategies that would be seen as appropriate for visual-spatial learners. Sigh. Quote kind of indirectly if you quote. I might delete some parts later.

I’m sorry. That stinks. We’re awaiting a diagnosis that still won’t fix things and doesn’t entirely fit. The sum of all the mild issues plus mild pragmatic language problems is too much. You can walk with a broken toe, but not so much with a broken toe, vertigo, icy cobblestones underfoot, high heeled shoes, a stack of fragile and heavy objects in both arms, and a monkey bouncing on your head. That is analogous to what is expected at this point. There aren’t even really behavioral issues or off putting personality things—it’s just well-placed factors that don’t play well together in a modern world and a total emphasis on being a finished product at age 18 (and no one tell me that college at 18 is set in stone—merit aid often evaporates with a gap year or delayed college). Of course, he wouldn’t likely live past forty without that modern world either. I could do with going back to adulthood at age 21 for a start. There is a reason that worked for centuries.

He can wear head to toe PPE like what people administering Covid tests did early in the pandemic. He might have to bring wash water/wipes/sanitizer with him on job sites. I assume that the bird droppings/dead birds are largely fomite contamination if left undisturbed, but I don’t know for sure. He might need to work really hard at decontamination for his stuff and his vehicle. I’m sorry! That’s hard!

…you’re in a paid webinar about helping neurodivergent students navigate the college process, and the presenter wants you to ask an audible question even after you type into the chat box that you’re ill, and it hurts to talk/cough. I literally used the word “accommodation” and advocated for myself. The topic tonight: college accommodations! Deleted for privacy

Grew up rural. Live in suburbia with major medical centers in the nearby cities (one of the best children’s hospital in the nation is a half hour away if there isn’t a lot of traffic). Our state had a lot of the originators of the conspiracy theories, and I am in a deeply red county. We had a local “expert” spinning off Covid conspiracies and political conspiracies simultaneously. Multi-talented, I tell you. Nurses embracing and spreading conspiracies. It was nuts. Self-inflicted stupidity, and of course, higher death rates than other regions along party lines.

https://www.politico.com/live-updates/2024/04/02/congress/hill-briefed-on-avian-flu-health-agencies-00150212?fbclid=IwAR1I0xaFsrIqZpyouNveNw8fIQ99epLm_P6248uUcKV-UuwRNqd64UAZADc_aem_AfA_sWQAyChvyR4tFR7naKL263XBUxL0ecmctueyYA9RuIBCTbmh1tbuaBk8LO0ZDzM How about a round of, “I found it first” where we spot problematic and probably currently true statements that will bite us in the butt later?!? This article is full of them. I’ll go first: “Demetre Daskalakis, director of the CDC’s National Center for Immunization and Respiratory Diseases, said on the call that while the health risk to the public is low, people with long exposure to infected birds or livestock may be at greater risk of infection.” I predict the word long used here is going to bite us later.

I have so many thoughts on this. DH is a HCW. Around here, much of the abuse was self-inflicted or came from other coworkers—HCWs were not always masking in the hospital (taking masks off when not around patients) and definitely not masking in their personal lives. Many changed jobs to avoid getting vaccinated. It was super difficult for DH to watch people be very sick and die when he knew that people we know were spreading the kinds of lies that we’re making people so sick in the first place. I know there were other kinds of burnout too, but I don’t feel at all sorry for HCWs who bring it upon themselves. I expect it to be terrible, but if I hear non-masking or anti-vax HCWs whine and spread conspiracies… We better have PPE and support though. I am fine complaining about those kinds of things! I think they will loosen restrictions in hospitals next time around to retain workers, and we’ll have insane spread in healthcare settings and nursing homes. They might do better in children’s hospitals (ours are better with protocols than the adult hospitals). That’s my two cents.

Oh, I think it used to also mess with my BP and heart rate, but the picture on this is not clear—too much family history of weird cardiac stuff. Hormone imbalance definitely exacerbates my MCAS too.

Oh, sometimes heartburn. It comes and goes. I read recently that it’s thought MCAS is quite common but that there are mild presentations. I come from a long line of people on one side of the family that know what they can and can’t eat and when with ever-changing quirks; I think I just have a more robust presentation.

Anaphylaxis—my doctor did blood tests to see what I was allergic too. I have pseudo anaphylaxis, but not true anaphylaxis (not sure that’s even a real term!). I don’t have idiopathic anaphylaxis, so once I had a good explanation for how true anaphylaxis is not really possible, I am more at ease. I do avoid handling fresh herbs because the cutting, touching, etc. causes some inexplicable reaction that is horrible. But I can eat the herbs if I wasn’t the one touching them and breathing them in. Ditto for essential oils—can’t be around a diffuser. My MCAS symptoms are itching (with patterns of what is most likely to itch), skin redness that shows up in the mirror but not looking at me directly (sounds bonkers but is true!), hot ears that often itch, itching in my ears and throat, general congestion, parasthesia—feels like a bug is actively biting me in specific places, and sometimes GI stuff, though GI is usually slow burn. I will also get a spike in migraines. Oh, and likely gas. I say likely because since infancy I have been gassy, but 90% of it went away after going gluten free (before I was diagnosed with MCAS). I would bloat up to the point of looking very pregnant every single day, and it was agony. I gave birth twice without drugs, and it hurt less because contractions give you a break, and gas pains don’t come and go. I was a miserable baby. It’s true that the reactions can vary a lot, and something can be fine sometimes and not others. It can also be processing vs. ingredients. It’s nuts! I can eat olives but not olive oil, for instance. Once MCAS is under control, I can eat most things again, but I have to spread out potentially problematic foods. That said, I don’t eat gluten at all. I end up with GI issues. I also pretty much avoid all really green greens (I can eat lettuces). I can tolerate small amounts in soup, and very small spinach salads. I like raw spinach though, and I can’t really eat just a little, so I avoid it. I get major GI issues with leafy greens. Tea is also a big problem. You can react to more than just histamines. I think I react mainly to gluten and oxilates, but once things get going, I can read to anything and everything.

Hemaplex was recommended on here a long time ago, and it really helped my son get levels up after a transfusion without constipating him.

I would take whatever you can get but realize you might be charged more if it turns into a thorough visit. I like my primary doc, but I don’t necessarily feel like I get coordination of care. I think that’s a dying art. He is much better (and nicer) than who I’ve had in the past though, and I think he is up-to-date.

There is also supposedly not a lot of evidence for various treatments for cough duration-wise, but there are a lot of things that make people less miserable while they have one, and some of those things can make a profound difference in ability to breathe and sleep while waiting for the cough to clear (I have a kid with expiratory airway collapse—it’s a big deal to be able to keep a lid on coughing; ironically while we want him to have controlled and productive coughing!).

I would guess she thought maybe you could do lunch.

I wouldn’t read into it. I might write something like that when busy. I try to follow up with chatty later, but it doesn’t always work out. If I was specific rather than vague, it would mean I want to make it work but don’t have time for small talk at texting time, and I didn’t want to risk not remembering to reply.

@PeterPan might have articles, @Wishes. I knew several people who did VT before us, so I was trusting. Since then, I’ve been in to a seminar about vision issues with a mainstream ophthalmologists who said the evidence for convergence issues is good.

Yikes! We’re supposed to be pretty swamped too. We’d like to drive 20 minutes or so for longer totality, but we aren’t sure how bad the traffic will be.

I believe it’s been recommended that all poultry be under cover to avoid the bird flu since it starts with wild bird migration. If they don’t implement some bio security, they could lose their flock too. This is not just a problem for factory farms from what I understand.

Fruit leather? Are they a good texture for canning in slices? You don’t need a lot of sugar—we canned pears with a fraction of the sugar recommended, and they were so good!

https://infucarerx.com/scholarships/?fbclid=IwAR1QEu9_XsIYz-MOgfoyqGjuSngb73A5-Tc0aJNo5ru_DBDnBBYYfAdcgT4_aem_AbkPhPsVlMTfJVjqkA6HVP2q8IOtYM-uMMMp8cra1YCjK9nxwUPj6m3HbGkRIsgR_IM

I think it also could’ve been more appealing to people who were uneasy about mRNA vaccines. Now I think we lost that opportunity.

From Sharon Astyk on a FB Covid group (no idea who she is!, but this seems well thought out)…not sure I can link vs. copy: Preparing for the Spread of Avian influenza. Ok, I know we've been here before, but let's go over the basics on preparedness for another pandemic. God willing, it won't be needed anytime soon, but there's a solid chance it will. So let's review, and talk about how H5N1 is likely to be DIFFERENT than covid, and thus, how to use what we've learned but adapt it. How to protect yourself against H5N1 IN GENERAL. 1. When there is an avian influenza vaccine, get it. Current flu vaccines do NOT protect against Avian influenza, although you should get your flu vaccine anyway because it protects against dementia. There will, however, be a vaccine fairly soon into the pandemic. But FLU VACCINES ARE NOT STERILIZING. Flu, like covid, mutates rapidly, and that's why you need a new flu vaccine every year and some people who get it still get the flu. The vaccine is excellent at protecting against death and severe disease, but not so hot at protecting against getting the virus. My guess is with distribution issues, an H5N1 vaccine will be available to health care workers and essential workers pretty fast, but scaling up to everyone will take a while, and there is every reason to expect multiple waves (Spanish flu came in multiple waves over 18 months) and your vaccine will become less effective over time. Expect WIDESPREAD inequities - rich nations are already buying up all the production capacity for vaccines that haven't been made yet. Also in the US expect MASSIVE house opposition to funding for such vaccines. 2. NPIs (Non-Pharmaceutical interventions) - you know, the things that we've spent the last three years telling everyone were terrible and a scarlet letter and hell on earth? Yeah, those things. They work - they work SO well that in 2020 we essentially had ZERO flu and at least one flu virus went extinct. Masks - best masks are resusable respirators. Then N95 headloop, next are KF/KN95/94, but even a surgical mask makes a difference (that said, I don't recommend surgical masks, but the best mask is one you will WEAR.) Limiting crowds Avoiding large gatherings Air cleaning with HEPA (including Corsi-Rosenthal) and/or UV C02 monitoring of air to show how much rebreathed air there is. Ventilation Closing Schools and other crowded venues (very, very important, because kids get H5N1 WORSE than healthy adults and are more likely to die, but also very politicized and likely to be controversial and delayed in many places. Be ready to pull your kids. Seriously.) Handwashing and sanitizing to protect against fomite transmission (the worries people had about fomite transmission for covid were largely overstated, although fomite transmission does happen, but flu has a higher rate of fomite transmission.) Biosecurity for animals - especially for farmers or backyard animal keepers, but really anyone with pets - outdoor shoes, sanitization of feet and paws, birds kept indoors or under covered runs, avoid places with bird and animal droppings, hot composting of manure, closing of fairs, petting zoos, etc... Avoiding raw milk (including from your own animals), careful handling of raw meat (I would be avoiding rare beef for a while) and eggs. I'd stay away from raw milk cheeses too, sadly. If you can afford it, your stock up list AND THE STOCK UP LIST OF COMMUNITY INSTITUTIONS should include masks, bleach (my suggestion is a bucket of pool shock chlorine which is much more shelf-stable than bleach and can be made into bleach by adding water - much cheaper and will last for years), hand sanitizer, soap, gloves, and boot covers if working with livestock or travelling in areas with a lot of waterfowl. You also might want eye protection, if you don't already wear glasses. Our eyes are better adapted to H5N1 reception than the rest of us, and it is a common pathway to getting it. Safety goggles are good, but even plain glass glassess are better than nothing, and there are several studies that show in an airborne pandemic, glasses wearers are somewhat less like to contract the disease. I cannot emphasize enough how important it is for community institutions with any kind of resources to be helping prepare for this. Your church, synagogue, mosque, community center, etc... should be preparing for this NOW - working on air cleaning, masks to hand out, safe food supplies for food pantries, etc... We know that avian influenza has infected both cats and dogs, so your pets can get it. Keep cats indoors, and away from poultry. Avoid walking dogs by waterways (I know, it sucks) and keep them away from dead birds and manure. Dogs should stay on leashes. If it gets bad, you can clean paws with a very dilute bleach solution, but remember, the virus is airborne and spreading animal to animal through the air. Best to try and keep them away when you can. For smaller dogs, for folks in crowded areas or with a lot of waterfowl, it might be worth training your dogs to use pee pads sometimes, in case you have to keep them inside at any point. I would expect there to be some backlash about backyard poultry keeping. YOU MUST KEEP YOUR BIRDS IN A COVERED RUN, and use basic biosecurity in caring for them. Given that the current version of HPAI has been found in Grackles and Crows now, I think this means all year round, which sucks, but the other choice is probably a ban on backyard poultry keeping in many areas, or biosecurity teams killing your whole flock. If you are looking to secure a supply of eggs, bantam hens or quail that can be moved fully indoors might be a sensible solution for some. What about the food supply? Covid obviously affected the supply chain. But avian influenza is going to affect it A LOT MORE for several reasons. 1. In the most basic sense, a symptom is a decline in milk production and weight loss in cows. So animals infected are going to be less productive. 2. Right now they are saying they will not slaughter the cows that have been infected. But they may have to for a number of reasons. First, the virus had neurological implications for animals, and it may be necessary for humane purposes. Second, there is likely to be a large outcry from nations that we export beef to. 3. Bringing dairies and feedlots up to full biosecurity is going to take time and cost money - some farmers may not find it cost effective and sell off or slaughter herds. 4. It is going to be harder and more expensive to get dairy workers who have to wear full PPE and be exposed to a disease that kills between 10 and 30% of the folks who get it. 4. We are still going to have outbreaks in poultry affecting eggs and meat. Up to now, we haven't taken them that seriously, beyond slaughtering larger flocks, but as the virus mutates the risk from factory poultry production grows. Here are food products likely to be directly or indirectly affected by a ruminant to ruminant spread: 1. Milk 2. Butter and Cheese 3. Beef 4. Goat and Lamb (remember, it was found in goats in Michigan as well) 5. Eggs 6. Poultry 7. Vegan milk, egg, cheese, butter and meat substitutes 8. Infant formula (I'm very concerned about this one) 9. Pet food (one in 7 cows in the US is too sick to make it into the human food chain, and most of that goes into pet food, and the pet market makes feedlot agriculture economically viable.) Understand, this is just for the current level of ruminant and ruminant to ruminant spread. I would almost certainly suspect it will be found in pigs within a month or so - and then pork prices will rise as well (and they may anyway as it is perceived as a safe meat) but we'll have bigger problems than pork. Things to stock up on if you can - shelf stable and powdered milk if you use them, same with eggs, canned or preserved meats, infant formula if you have a baby (and if you can afford it, even if you are nursing, remember you could become ill and be unable to nurse in an epidemic - a can or two of formula is a good idea, and you can always donate it to a desperately grateful food pantry.) Shifting to non-animal sources of protein, dairy and egg makes a lot of sense, but expect to be among many doing so, and see corresponding shortages and supply chain issues with non-dairy milks, flaxseed, vegan butter and cheese. If you are already a vegan or use these regularly, you might want to prepare for supply chain disruptions. I would also expect this to have knock-on effects that are harder to predict - for example, if countries close to US beef exports, beef prices may fall at first. If cases are found in slaughterhouses or processing facilities, it might affect other meats as well, and a bunch of things we won't see until they show up. ALL OF THIS IS FOR THE CURRENT LEVEL OF SPREAD - into ruminants or between ruminants, with occasional animal-to-human cases, rather than sustained human to human spread. Just to be clear, I expect some societal disruption EVEN IF it does not get to human to human spread. Right this minute, I suspect one of three things is going to happen next, and these are the possible timelines. 1. H5N1 will be found widely in domestic animal herds. Everyone will freak out. A few cases, maybe a dozen or so animal-to-human cases will be found, but no H2H spread yet. There will be some new biosecurity mechanisms, and price spikes, and gradually everyone will settle down, mostly forget about it, and get lax about biosecurity, and then it will cross into humans next winter, next year or a year or two. This is the most likely scenario. 2. We will find that the mutation that permitted widespread spread into humans and made cow-to-cow transmission probable makes it easier to get into humans, and will either find that human to human spread is ALREADY occurring in the next couple of weeks. Before covid, I think sustained human to human transmission was unlikely to pass unnoticed, but covid can cover a myriad of sins, so there is a small but non-zero chance that this has ALREADY caused the virus to shift enough for some increased (but maybe not easy) H2H transmission, and that by summer or early fall, we'll have hit full-scale H2H. For many months now, I have been reminding us all that WE ARE MAMMALS and that H5N1 is destroying whole populations of animals and transmitting between them. 3. It gets into pigs. Odds are it got there already (there is some evidence of PRIOR appearance in pigs, so we know it can) and shortly after recombines with human flu and we're all fucked. Timeline just depends on when - I'd say within the year at the latest and maybe last Thursday. I don't see a single plausible scenario where this DOESN'T turn into a human pandemic in the next few years. The big question is whether it turns into one in the next few MONTHS. We know, however, from immune surveys, that there have been undetected cases. Avian influenza ranges from deadly to mild - for example, the only symptom of the current TX case is conjunctivitis, which suggests infection via eye. There were five recent cases in Cambodia, including two deaths. One of the deaths was in a three year old child, and their brother, a teen, was asymptomatic but positive. All of which means that it will be perfectly possible for some people to be walking around spreading the virus without being aware they have it. Moreover, we know that influenza has a short asymptomatic spread period. This is good, because those asymptomatic cases means that half of everyone who gets it won't die, but bad, because it enables spread. So while the current known Case Fatality Rate is between 52 and 60% for cases worldwide, the actual IFR will be expected to be quite a bit lower. WHO estimate is that it will come out around 12-33% of all cases. So somewhere between one in ten and one in three of those who get H5N1 can be expected to die. The numbers are HIGHER in young children and the elderly. It is also worth noting that during the Spanish Flu, children and the elderly actually did better, as the Spanish flu induced cytokine storms, which caused rapid progression to death in those who were young and had HEALTHY immune systems. It was the strong immune response that killed them. However, we can expect that many of the people who get covid will not have an overactive immune response, but an ineffective one, due to documented immune damage from covid. Remember, covid damages your immune system for 6-8 months. Immune damaged people have milder initial infections, but are unable to clear the virus, and of course, more likely to become very ill or die. I would expect a human to human avian influenza outbreak to come in waves, probably an initial wave with comparatively lower rates of transmission, then we all say "that wasn't so bad" and it comes back much worse (a la both covid and spanish flu.) Thus, even if you don't get sick, you will need to be prepared for the following. 1. Large scale supply chain disruptions globally - the ones we had with covid were just for practice. I would also expect SUSTAINED supply chain disruptions, or waves of disruption, but worst in the winter. 2. Higher mortality due to coinfection with covid and other viruses - that is, Avian flu is bad enough, but covid plus flu plus RSV even worse. A winter wave will be particularly dangerous this way, and I would assume one in the next few winters. 3. Disruptions in essential services including trash pickup, local government services, national government services, court services, water treatment, and potentially power. All those things are run by PEOPLE. 4. Overwhelmed hospitals and medical centers. Almost half of all people who got H5N1 required ICU level care. This is going to be very tough on an already overburdened medical system. 5. Shortages of PPE...again. 6. Shutdowns - and I know some of you think we won't shutdown, but I don't think we'll have a choice. Ultimately, an avian influenza pandemic will be so disruptive people will have few choices. However, we are unlikely to see the level of pandemic supports covid received. 7. In the US widespread initial death, particularly in Red states (the ones that produce a lot of our food, btw) from people who believe passionately that masks and H5N1 are a psyop. They will change their minds, but probably not right away. 8. Political consquences. A LOT of them, many of them hard to forsee because my best guess for the timing of H2H transmission is next fall and winter - coincident with the election. 9. Repeated waves of death, illness and disruption going on at LEAST a year and a half and maybe much longer. 10. Closed schools (with the usual tossing all the responsibility back on women and the informal economy), closed businesses, economic issues. 11. Widespread pet abandonment as the fear of getting H5N1 from your pet becomes an issue. 12. Destruction of family farm economies for small farms that rely on livestock. We are going to need food, basic goods, community support and care systems for the most vulnerable, and the ability for our neighbors and our community to work together. There's a TON of work to do, and it is going to take a long time, and our response to covid has actually undermined our preparedness in many cases. We'd best get cracking. And like covid, this one is a marathon, not a sprint. Also remember human beings really, really suck at dealing with more than one crisis at a time. But none of us is allowed to forget that covid and climate change and political instability are not going away just because we've managed to get ourselves into another pandemic.