Maybe that’s why my son hasn’t been followed up for testing that I know of—he’s not in school.

My long-term diagnosed 19 y.o. with short hair who presents as very traditional got almost the exact same rigmarole. It’s CYA. He has not yet been asked for any drug testing in spite of the threats. It’s a system-wide policy.

I’m really so sorry. Praying he gets the best care and that the whole family gets appropriate follow-up. Praying for your own mama heart and ability to respond to what is being asked of you.

I painted a written policy as sending a message, not that the teachers actually are this way. The policy is the first vehicle for communication that is often encountered by a parent before they pick up a phone and call a teacher. It’s basically “don’t even call us if you are ever going to be sick or go on vacation.” I have nothing positive to say about sports culture—we refused to participate in that. It’s fine that some can’t, but I heard a strain somewhere in the thread about waiting lists and how people know they will lose their spot if they flake. The people I knew with waiting lists happened to be flexible. I found it ironic. Of course I think that people in the arts should live on ramen and wear holey shoes. /s In the end, the main music teacher we had was a friend, and we sent business her way. Sometimes we flexed for her.

I understand that people are paying for a slot, but a lack of flexibility denies entire groups of people who do have life come up. We have the whole gamut of stuff, and I don’t have a spouse that can flex because his job is all over the map. FWIW, the most prestigious and busy studio either of our kids had lessons with was very flexible; I was stunned. There was always another kid (or adult) who could take your spot if you gave notice; you just realized your missed lesson went to the bottom of the priority box for rescheduling. Easy peasy. A lack of flexibility means that low-income, single parent (or functionally single parent, medically challenged people are cut out of things that enrich life (and I would argue promote healing and brain development); the same people who get harranged about balance: we are THAT family that always gets blamed for any way in which we’re not typical while simultaneously being told, “I really don’t know how you do what you do.” It defies logic. But we are not flaky except socially, and that has more to do with the pressure of trying to host with a chaotic life and a lot about a functionally absent HoH who hasn’t figured out how to be a team member when home, to be frank. (Side note: I have lots of scheduling policies to protect sanity. What you do is not even always possible for us, and that’s fine—we find our own way. We have medical providers that are restricted to specific offices, days, times, and our complex medical kid has three rare conditions, two of which are unrelated to each other. His health system has some “clinic” days where they try to combine appointments into one block of time and one location, but he rarely needs that specific block—the issues he has are outside those specialties and times even when those clinics are meant to cover his main diagnosis. We are ALWAYS special like that. We are always the exception to the rule.) My point was more that when a studio is advertised as draconian, we don’t even try, but it sounds like we should’ve felt free to since we aren’t flaky. I know that dmmetler attracts families who are more like us. If that is her bread and butter, it sounds like it’s not only about policy but about communicating the right things to the right families—if a studio tightened up a policy and didn’t speak to me individually, I would feel like our family would have to quit. I would have to have a long-term relationship to not feel like I was being targeted. I have good reading comprehension, and I would assume that people mean what they say, or they wouldn’t bother to put it in writing. But I am from a small town where people have relationships all over the place (life is messy). This business of expecting strangers to say one thing (in writing no less) and do another is…not sure of the word, but it seems illogical. A draconian policy posted on a website says, “We take people for whom the sun shines every day, and their poo smells like roses, and on the rare occasion they have a problem, money covers it. All others need not apply. Especially those for whom lesson money is a loving and sacrificial investment.”

It’s interesting to me how many of you are or have instructors with draconian policies who make exceptions. We were late to start music lessons because I took all the posted draconian rules and gospel and figured we’d hate the experience. ETA: “as gospel” We are exactly the people that need some flexibility but do not abuse it, but it would never occur to me to bother calling a studio that posted strict rules, so that colors my earlier feedback. Eventually we found the right teacher, but it was via friendship. My kids NEEDED music lessons but rigid policies wouldn’t have worked. And side note…we did speech therapy with a provider that had fairly predatory practices, but it was the only place offering this kind of therapy; it was rigid beyond rigidity, and she did a lot of unethical stuff with employees. Many finally left. We were not allowed to have holidays and vacations at all. We were expected to be there 52 weeks per year for years at a time (multiple kids for multiple appointments per week). We had to build in ways to flake for sanity’s sake (and we still hardly ever missed). We liberally took snow days because this was really the only excuse they found acceptable other than illness, and we didn’t get sick (and we only used snow days a couple of times—liberal means I could drive safely in the weather but I knew many local people could not, so I played the safety card). So, rigidity can bite both ways. If they had allowed a week off now and then, they could’ve filled some of those slots instead of having last minute cancellations—they ALWAYS had people wanting to get extra sessions in.

If you go this route, document it because if she responds, there will be fewer symptoms to report to the doctor. For most people with heavy duty histamine or MCAS issues, Allegra is the drug of choice, and it can take multiple doses per day—don’t do multiple doses without a doctor, but don’t assume it’s not helping with one dose, if that makes sense. With GI issues, Pepcid is definitely a good place to start. GI issues can be very weird to describe also. Does she have a migraine history? Not everyone gets headaches, and some people have more pronounced prodrome and postdrome—I used to not have significant symptoms except during the headache, but I sure do now. Taking magnesium even when I don’t think I need it has helped a ton with all kinds of things that I didn’t know were related, including muscle pain (I already took some mag, so if I wasn’t having twitching, I assumed it was as good as it gets. Nope!).

I’m working on a simple cross stitch, and I started cutting and ironing the edges of some yarn dyed plaid fabric squares so that I can hem them to be used for napkins.

I vote this.

Sometimes MCAS shows up as GI stuff or POTS types of things (and POTS is a common comorbidity). I get more of the itching and such, but I would bet that a couple of people in my extended family have it with GI stuff. They have for decades always known how much of various things they can get away with eating, and it’s very eclectic, but they didn’t have the itching so much (except from hygiene products and such).

Do you have seasonal farm markets or pop-up markets during the summer? I grew up rurally where there was not a lot of fresh veg in stores (much better now), so we had a lot of frozen veggies. These days, a lot of places offer double credit for EBT at farm markets and such, and I know that I really preferred fresh veggies as a kid over frozen. We gardened, but EBT plus a pop-up farm market might work out similarly. We also ate a fair amount of canned food. The salt is not ideal, but veggies aren’t full of other junk, just kind of limited in range, and not everyone experiences adverse effects from salt.

I like this with some kind of understanding about how vacations work. For super flaky parents…my son had a guitar teacher that will take established students on a whim, but they get scheduled last. So, if you had lessons but needed to quit or are busy, and you want a brush up lesson once a month or whatever, he would take you as his schedule allows. If you are willing to do something like that, I don’t know if that would help with families that need flexibility but are abusing the policy rather than discussing that, but I mention it just because I’ve seen it done.

Ever After Return to Me You’ve Got Mail

I had a bad stick once at a blood bank, and the tech thought it was funny to continue to make the needle vibrate and showed everyone who walked by like it was a party trick. Seems like I clotted early too, and I don’t remember if I was ever able to fill the bag, so that gave her more fun wiggling the need in my arm. I think you’re likely to be just fine with the precautions you’re taking (I don’t think I got any instructions with mine, but I probably just used that arm carefully for a couple of days). If you are on blood thinners or take a lot of NSAIDS, it might be more bruised than for someone else. So sorry you got a migrating IV/needle!

How does he know it wasn’t there while you were still ovulating? Does he have an older ultrasound? No advice for you, but I know hemorrhagic cysts can be really weird. I hope you are able to get answers to your questions.

That’s much more than I expected—good to know! Not yet, but augmentin is famous for GI issues. If upping my dosage of my standard one doesn’t help, I will consider another, but probiotics are often an MCAS trigger. I do have some room to move with my antihistamine dosages though too. I will be watching for c diff in case—I know it can strike even months after an antibiotic. I am pretty much over the pneumonia. Several family members were down with it, all of us for the first time. It was bizarre, and if we hadn’t gotten chest X-rays, we’d have gotten very ill as none of us had typical symptoms. It wasn’t Covid, but we don’t know what it was.

I’m taking Thorne’s version of Florastor. I take it daily, but I am bumping my dose for antibiotics (augmentin plus z pack, but the z pack is finished) that I was Rx’d for pneumonia (and yes, augmentin was an odd choice—the others in my family got plain amoxicillin). I can’t choke down yogurt or anything that tastes like it, and I don’t seem to tolerate other probiotics—they flare my MCAS. I still have five more doses, and I am supposed to start a seasonal job on the last day of dosing. I have already missed a number of shifts for the actual pneumonia, but this GI stuff is not convenient.

Someone on a Covid Facebook page I follow had some diversionary fun about “mad cow” disease: https://threadreaderapp.com/thread/1779332961302683764.html?fbclid=IwAR2t6Z8X-teDyDqXKMlBnmgPaepc53Eg9r-2i_dL1Zf_EXwxt26moO5kNH4_aem_AfunlVbNniesfB5Mc7gmv5kzNnYuGUDaGIWDG0RZuHFuytpLbepcHu_a3k6mFYMTB6o

I have learned that I need magnesium all the time, not just sometimes. I take glycinate. Ditto on working up to it if you’re worried about GI issues. I can’t believe how different my muscles and joints feel while taking it, and my migraines have calmed back down. I think I was waiting too long to take it when I took it intermittently.

No direct experience with Costco, but my audiologist friend says that the reason hearing aids get such a bad rap is that people don’t buy what their audiologist recommends because they are expensive. That said, sometimes there are parallel brands that can be a little less expensive. You’re also usually paying for servicing and tweaks to go along with the hearing aids.

This may or may not be true, but this age is tricky because the expectations for kids this age are lower and less demanding. In a couple of years, that can change a lot. I would expect a child who has had speech services that long to not look particularly apraxic if the services were good—what makes you think it was not a solid diagnosis? I don’t think it’s easy to get speech services for a ten month old, so I assume something really obvious was happening at the time. It is a catch-all term for any motor issue related to speech—one of my kids had a hypermobile jaw that made speaking for long difficult. We also now know that fixing his APD finished off the speech issues he had even after evidence-based therapy. Some Scottish Rite lodges do dyslexia tutoring, but many parents on here have gotten literacy training to teach their dyslexic kids, and it’s not crazy at all to do it. Lots of parents also use Barton. Mine had issues from the get go, but the dyslexia piece was mild. We got away with solid phonics, but mine is the kind of kid that thinks about thinking (he refused to comply with SLP work until the SLP talked him through how it worked, lol), so he had a lot of compensatory strategies. I’d check providers on igaps.org to see if anyone intervenes in auditory processing stuff with kids that young. For my son, APD was a huge part of the puzzle, and APD therapies were life-changing. I think if we had someone who could’ve done that therapy earlier, the other issues might not have gotten diagnosed at all, but it’s hard to tell. And I should emphasize that my son’s APD was considered borderline or mild, which stretches credulity when one sees the before and after picture.

https://www.reuters.com/business/healthcare-pharmaceuticals/bird-flu-pushes-us-dairy-farmers-ban-visitors-chop-trees-2024-04-11/?fbclid=IwAR2iUVE2urx6TrWMXYvyItN9YY-omTomgNTCoukajZvyr4ZOj_M0usoX2CE_aem_AZ7-NEH3w5KN0b9N5JZaUUkJK3_-Su-jakw52vMESMcSlqmLGTcJVPbIhzfkHn3ieRM Has some information about enhanced bio security on farms.

I would try not to stress too much about this in parental regret terms, but I would use this to advocate for her—telling doctors that she has only recently become aware that her normal is not everyone’s normal, and you want to be sure things are not overlooked. My kid with a million issues, including hypermobility, often denies having issues with something his doctors expect, but then he realizes later that he is having issues. It’s just that he hasn’t known (or can’t remember) things being different. It can take time for kids to figure this stuff out. I’m glad she has a cardiology appointment lined up, and I’m sorry her sinuses are infected! There is a lot of creeping crud going around. 3 people in our house had or are still recovering from pneumonia—first time for all of us, and none of us have typical symptoms. I wonder if post-Covid, a lot of “ordinary” bugs are recombining in immune compromised people and becoming more problematic.

That was not our experience. And yes, we are aware that everything in cities is insanely expensive. If you’re just annoyed that I am raining on a parade, my response is that I’d wished someone had rained on my parade before I went to my conference in Chicago. It was a long, annoying, and not fun weekend that we were not prepared for even after asking for tips on here.

IIRC, you might need advance tickets for everything. We never did figure out how to park in Chicago when we attended a conference—the hotel lied and obfuscated, and it cost a fortune. Parking anywhere else seemed to require an app. Chicago did not leave a good impression on me.