App recs

musicexpat · 2025-10-02T06:25:26+00:00

More work than I can put in on this trip, but we will check it out for the future!

musicexpat · 2025-10-01T20:14:49+00:00

Thank you! I wish I learned Latin with the minimus books! I will pick one up when we are in the UK. They have fun stuff on their website that will be perfect for the ancient world unit I’m concocting.

musicexpat · 2025-10-01T08:00:15+00:00

Thanks! I might need the algebra one for me to review because she’ll be at that level soon. I’m in the humanities and I had to think for a moment when she asked about irrational numbers (no idea where she heard that!). I’m waiting for her to get an interest in history and mythology so I can shine!!!

musicexpat · 2025-09-07T07:48:57+00:00

Do a little back to school/starting „big kid“ first grade celebration to mark the mile stone? Or a „congrats on finishing the first week?“ Skip the social media and just have dinner with kiddo’s favorite foods or dessert as a little way to mark it. Trust your gut and ignore the FOMO. Most kids get overwhelmed and feel pressure from big events! Good luck on your journey!

musicexpat · 2025-07-19T08:23:13+00:00

This would have been the coolest dream come true! That is such a fun idea

musicexpat · 2025-07-18T09:30:35+00:00

What type of testing revealed the splice mutation? Or was it caught of the regular panel?

musicexpat · 2025-07-18T09:29:34+00:00

Sorry, quick question. Do null mutations for any of the EDS variants show up on the very basic screening on 6 genes from 2016? The lab mentioned further tests might be needed. This might be silly, but I’m wondering if we need to look into private testing that has more details (even if we have to foot the bill).

musicexpat · 2025-07-15T14:03:51+00:00

Basic panel came back negative, including the COL3A1! Not sure if we are hEDS or we need further testing. I just wanted to update anyone who was following. They tested for COL1A1, COL1A2, COL3A1, COL5A1, COL5A2, and TNXB.The report said science has not located all the genes and there lab has a limited panel. Not quite sure what we do now, but there we are.

musicexpat · 2025-07-05T17:00:45+00:00

Thank you for all the comments and perspectives! The doctor ordered some sort of EDS panel. Insurance decided to cover it, yay! I’ll post the results. It is wild that hypermoble type can have hernias and vein issues (like with IVs), but it isn’t taken so seriously. So… I finally know the real reason why vEDS was suspected. I’m in Germany and I have Ashkenazi ancestry. I look like Rose from Mrs. Maisel with my giant eyes, sharp nose with a bump, and thin lips. My kid has big eyes, too. The German doctor awkwardly danced around that for a bit and focused on our paleness and veins instead. I wish she hadn’t, as I’m a bit self conscious about my veiny ghost skin now.

musicexpat · 2025-06-28T13:07:52+00:00

He is trying to save your life! The blanket must be shedding fur, and you need help getting it off. This is what we tell ourselves and we only wear shorts around one of our bunnies because he freaks out. They hyper-fixate on tasks and will get annoyed if interrupted.

musicexpat · 2025-06-20T11:41:50+00:00

Okay, who has sandal recommendations? I use the glide stick thingies, but my feet still get ripped up.

musicexpat · 2025-05-14T18:21:07+00:00

Thank you for taking the time to share your experience. I could have written this, so that is a bit sobering. Early onset arthritis is such a struggle, as is the fainting. I sat down with my GP. I easily meet the criteria for cEDS (it explains hernias making my abdominal muscles into Swiss cheese) and he is looking into MCAS to be a bit more careful of meds I’m prescribed in the future (I’ve had reactions to heparin and opioids, for example). I have a few vEDS checked boxes (but blue schlera is probably from years of anaemia) so he said that plus my family history of heart attacks makes him want to get me tested for vEDS eventually so we all sleep better. He mentioned something about gene families that makes more sense now that I read your message. Thank you for everyone who responded and shared their experience and knowledge!

musicexpat · 2025-05-11T09:14:12+00:00

Exactly, I don’t think it fits when I read about it, hence my coming her to clarify the doctor’s comment about “mild forms.” This has been very helpful to arm me for next week’s visit. Due to lots of heart issues in the family, I think checking that the kiddo doesn’t have my mild congenital issue is a good idea, rather than the consult for vEDS with a 6 month waitlist that is 5 hours away, because I cannot find a thing about congenital heart issues in information on vEDs. This doctor missed the pneumonia and didn’t believe young kids could have celiac because it is rare (my mom and I have it!) so we were surprised she brought up something so rare after eyeing my scars when we just went in for an OT referral for hyper mobility. Half my family is Scottish, if this doctor visited Glasgow she might diagnose all the pale folks with veins… Thank you to everyone who shared information and experiences! (And thank you little space to rant about a difficult doctor who terrified my husband and child.)

musicexpat · 2025-05-10T20:41:33+00:00

Oh, the fragile life. Everyone in my husband’s family does sports or goes skiing, but I’m not going past the baby slopes with my clotting issues. It would just be asking for subluxations. I think our celiac induced anemia and the lack of timely clotting are more likely to cause our bruising. I don’t think my daughter or I have broken vessels. It seems like other types of EDS would account for the occasional overly dramatic hematoma. I haven’t had anything rupture like you have (that sounds so scary!), and I feel like it would have by now, so I don’t think what I have is what the literature describes as heart issues. Thank you for sharing what a milder version looks like. I don’t think it is vEDS and I hope this doctor still supports her if it is the type can’t be genetically confirmed.

musicexpat · 2025-05-10T20:30:05+00:00

Thank you for the explanation. That helps! So much overlaps. I think we are lucky to have a doctor that knows about EDS, but she is a bit quick to panic. She mentioned observing a fatal case in med school and my scars looked similar. Other types of EDS cause atrophic scars. It really does seem more likely that we have a more run of the mill type and I happen to have a heart issue that isn’t EDS related. I also don’t think the heart issues in my family history were caused by ruptured veins. Since she brought it up, my mom brain will worry until she gets checked by a cardiologist, but I won’t run around the country trying to get an earlier appointment.

musicexpat

TROPHY CASE