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kbutton

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  1. Antiphospholipid stuff is sort of an emerging thing in the literature--it's been known in lupus, but it's being recognized for its effects as a disease on its own. I have one identified family member with it, one presumed to have it based on the other family member having it, and then about five generations of symptoms consistent with it that aren't necessarily only heart related. It's associated primarily with strokes and miscarriages in women, but if you google the rare complications people in my family have experienced in past generations (bowel ruptures, for starters) and some of the less rare but still unusual things (leg ulcers), you can come up with ties to APS that are just now being understood. It's inheritance pattern is not known--they think it's a gene plus some kind of event that has to trigger the expression. Cardiologists might not look for APS because it's probably considered a blood clotting disorder, something that affects pregnancy, or a lupus add-on, so if you go this route, you might need to arm yourself with some information. If so, feel free to private message me down the road. APS can be implicated in up to 20% of all blood clots according to some of the literature, but the lesser known effects are quite serious in some cases. Other people have elevated blood tests and never have a serious event. It's just weird, and more research will hopefully clarify/stratify risk profiles.
  2. I have been really worried this would become the case as online classes become more common--I figured it would trickle down to the live classes too and require people to be plugged into their communication 24/7 to keep up. That's egregious, honestly. I think it's egregious in online classes too, but this is worse. Link to the workbook?
  3. We have also done the gear ties of various sizes to replace twist ties or to hang cords in the garage. Other past ideas: pocket knives (found nice ones on sale) mini utility knives with replaceable blades (got rave reviews on those) knitted dishcloths homemade cleaners (if they are from concentrate, you can put them in TSA bottles for travelers, and they can dilute and bottle them up at home) homemade lotion
  4. This is my situation as well, except that I am on Facebook. I stopped for several reasons, including time constraints, the fact that my yearly letter was hard to make cheery (at one point, kids' special needs made it hard to write a heartfelt and genuine letter without being too free with information about our kids), and the circumstances around the holidays were just difficult (DH's work schedule, having to deal with my MIL). Also, my DH never helped nurture connections with far-flung friends and relatives, and by the time I figured this out, I had probably overextended myself keeping up and trying to not offend (pictures to be included were a huge, huge issue with his mother). If he wants his family to be in the loop, he can make some effort. Okay, and getting accurate and up-to-date addresses...ugh. Thankfully my mom would often forward her file to me that had her address labels on it, lol! I would like to be less behind and overwhelmed and start a tradition of the yearly non-Christmas letter/card/photo card instead, but we'll see.
  5. Here is a link with a list of differential diagnoses: https://emedicine.medscape.com/article/236582-differential Diagnostic criteria: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911656/
  6. I think it's definitely worth asking about the bolded--I'd want to know how they determine it's related to rheumatic fever or not related to it and how reliable that determination is. There were heart issues missed in my extended family that should've been detected a long time ago with a good family history. Some cardiologists are not up on their genetics AT ALL. It doesn't hurt to get multiple opinions and to look for a cardiologist that is interested in genetics (and even get a second opinion). So, I had a great-grandparent with rheumatic heart damage, and she ended up with a pace maker. A family friend has valve issues and has had surgery with no complications. She does get a-fib, which makes her really uncomfortable. I don't know if that is related or separate from the valve issue. One of her valve surgeries was open, but I think the other one was (or will be--not sure of the status) done via cardiac catheter. If it turns out to be not rheumatic, one possible thing to consider is autoimmune stuff, such as antiphospholipid antibody syndrome (with or without lupus). It causes valve problems.
  7. I would also add that there are many supports that you have to beat the bushes for vs. having someone just tell you about them or offer them. You'd think that county board of DD help (as it's called here) would be more obvious to people, but it's not, and in many cases, the schools are the gateway to those supports even though you can seek it out yourself. It's just easy for the board to partner with schools. Some schools are VERY gatekeeping. Some board of DD people are gatekeepers. Other times, they are both really accommodating. You just don't know. But a diagnosis means you are eligible for more--the connection part isn't necessarily going to be automatic unless you get a psych that has connections and has really been around the block a few times. It's just a different job from connecting to services.
  8. Having a global developmental disability that can be listed is a game changer in terms of funding or supports, especially if there is no physical or cognitive disability. ASD is considered a pervasive (and global) developmental disorder. Most states have a formula of some kind of global/developmental problem + cognitive + problem with independent living skills to get to a level of funding. They will look at "side" diagnoses like ADHD, tics, etc., but the developmental disorders are the clinchers that take it to the level where funding or supports are given. Often you need two of the three things in that formula. Without and ASD diagnosis, you probably have just the independent living skills issue. Trying and failing at therapy is data, honestly, and it would be nice to have that documented in a case file for where he needs supports in case he needs supports for jobs and such later. Really, I think a diagnosis would be nothing but helpful.
  9. Oh, that's frustrating! Did you have language testing done with the evaluation? The "no writing" thing makes me wonder if that's part of it. Then, remembering things long-term that are less meaningful to you due to a language issue can be tricky. Is the writing because of the motor issue? Does she use keyboard accommodations? With social studies, does it help to do timelines? I have a kiddo with a CTD, and he has a mishmash of learning issues and a lot of motor problems. A lot. It's not always a hallmark of his particular CTD in the literature, but at a conference, we met tons of other families whose kids had motor issues. It affects so much! Does your DD have a lot of fatigue? I am wondering if you need to use study cards, such as Quizlet for retention. I am also wondering if her auditory working memory is good, but maybe not her working memory for other contexts.
  10. Lots about attribution, but she calls it Main Problem and Secondary Problem solving.
  11. Okay, just listen to her, lol! She's giving a great Big Picture overview of all kinds of things with examples. This is applying strongly to my ADHD family members as much as my ASD kiddo. The APD stuff was brief (but helpful) at the very beginning. She's covering a lot of ground, including problem-solving...so good.
  12. Scratch that! Today's lady talks about auditory processing and how it's different from other language problems. She's and SLP that co-evaluates with an audiologist. I am not sure how long she spends (still listening), but that's worth listening to if you have that in your mix of issues!!!
  13. I am not hearing a lot either--Kelly Maher was good, but I already had the gist of the "why" to use her stuff, and that is what the session was about. I feel like some of the sessions would've been useful a few years ago, lol! We're just past some things or in a situation where we have our needs met in the areas being discussed. I felt like the 2e stuff was more 2e than I wanted and less about the combination of autism and 2e. I could have missed something though--I was skimming ahead if a presenter got off on something I'd already heard a bunch of times. I might look at the Language Skills session a bit if I have time today.
  14. If you are using GoodRx, you realize that doesn't count toward your deductible, right? It's not worth it for us to use GoodRx for that reason.
  15. That would be cool, but I suspect it won't happen this year. 🙂
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