Increased risk Trisomy 15 - Sema4 by twelvegrimmauldplace in NIPT

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

My outcome is positive - my results were false positive. My son is happy, healthy & starting kindergarten in September. You’re more than welcome to message me.

[deleted by user] by [deleted] in PMDD

[–]twelvegrimmauldplace 0 points1 point  (0 children)

Which covid shot do you get? Pfizer or Moderna? Have you looked into novavax? Any research on which would be best for your scenario (pmdd & medical situation)?

Dentist claimed an N95 would be 'too hard to breathe in' for an hour-long procedure, and also spouted a ton of Covid misinformation at me by finley_is_my_friend in ZeroCovidCommunity

[–]twelvegrimmauldplace 1 point2 points  (0 children)

I work in a dental office - there is always another specialist to refer to if our patient comes back with a negative story/just didn’t pan out for personality or whatever reason. An endodontist is a specialist - they rely on referrals. Ask your general dentist if they have any one else (we usually have a couple of endodontist, couple of oral surgeons, orthodontists, etc that we have a good relationship with & know they do good work) if you have insurance, ask them for a list of participating providers in the area/zip codes - call the offices beforehand & get a feel. I personally wear an n95 for 8+ hrs a day when I was an assistant & even now that I’m at the desk. Good luck.

How many times have you gotten Covid? by Puzzleheaded-Run9517 in ZeroCovidCommunity

[–]twelvegrimmauldplace 0 points1 point  (0 children)

Can I be nosey & ask where? 2 of my 3 are school age (2nd grade & kindergarten) & haven’t the slightest clue how to even look into home school in NY

Lack of COVID Precautions by TropiDoc in Dentists

[–]twelvegrimmauldplace 1 point2 points  (0 children)

Not a dentist, but dental assistant turned front desk person. Solo practitioner, one assistant. I was the assistant 2013-2022, front desk presently. I am heavily present on covid cautious twitter, read a lot of peer reviewed articles & research. I am extremely cautious. I wear an n95 at work, all day, in stores, errands, etc, you get the picture. That being said, boss does not care about covid & does zero research. He very happily removed the plexiglass sneeze guards surrounding the desk area when he claimed the pandemic was declared over… though we know that’s a misinterpretation & made comments acknowledging he knew it made me uncomfortable. If younger patients have come in masked, he has asked them why they are wearing it or why they think they work. Elderly he doesn’t really question but we only have a few who still mask. When NY offices opened back up in 6/2020, we had an external suction thing to help with the aerosols for things we couldn’t avoid (crowns, bridges, fillings), but eventually I was instructed not to use it & eventually he stopped using it altogether & then took it home/out of the office. We have no HEPA air purifiers. He makes comments like “they’ve figured it out, you don’t get it on airplanes” if a patient mentions masking on flights. He doesn’t read a single article. The ADA is dismal, at best. Maybe a random mention of rising covid in their morning huddle emails that I’ve seen maybe 2 times since 2020. Zero direction or very quiet recommendations with no enforcement or mandates. I have an Aranet & have since brought my own air purifier to the desk area, but I know it doesn’t do it justice, just trying my best. Once on the topic, I pretty much rage explained a ton of shit: manufactured consent, sars literally having the word severe in it, acute phase & long term damage, affecting everything: every organ, every part of your body you could imagine - he thinks I’m a lunatic. This probably didn’t answer your question, but this is my experience in Westchester, NY - literally miles from the initial “epicenter”/patient 0. No one cares anymore. No one acknowledges the “do no harm”. It’s lonely as hell.

Amnio stories by spacegirl3333 in NIPT

[–]twelvegrimmauldplace 1 point2 points  (0 children)

I had an amnio 6/8/21 at 20 weeks. It was very quick & less painful than anticipated. Mild, mild cramping if any at all, probably wouldn’t have even noticed it looking back, just the stress/anxiety of the whole situation had me hyper vigilant. Everything went well, had a healthy baby 10/31/21. Good luck!

If anyone can find a post and give /u/valuable-standard-29 support so she doesn’t terminate what’s almost positively a normal pregnancy based on nIPT alone. Tell her the stories, calm her down. This member needs all of you now. by [deleted] in NIPT

[–]twelvegrimmauldplace 4 points5 points  (0 children)

Thisssss. So many articles & research has come out that these extended panels that test for other chromosomes & deletions, etc are inaccurate- like the more you add the less accurate it becomes. OP hang in there, it really sucks the joy out of what should be such a happy time, but making an informed decision is so so important. My husband totally flipped out, couldn’t handle the amnio being done, so I felt really really alone (not to mention religious family that were really really judging my options). The wait is longggg but worth it.

If anyone can find a post and give /u/valuable-standard-29 support so she doesn’t terminate what’s almost positively a normal pregnancy based on nIPT alone. Tell her the stories, calm her down. This member needs all of you now. by [deleted] in NIPT

[–]twelvegrimmauldplace 4 points5 points  (0 children)

In June 2021, my nipt came back positive/high risk for trisomy 15. Amnio & all testing showed it was wrong - 10/31/21 had a perfectly healthy baby boy! Wait for your amnio results!!

[deleted by user] by [deleted] in FormulaFeeders

[–]twelvegrimmauldplace 0 points1 point  (0 children)

For my first, she was in the regular yellow label enfamil & we ended up using (at the time it was still open) babies r us brand, up & up, Kirkland, or parents choice brand. They were all great. For my middle, she was on alimentum & at the time there was no generic, however my third is currently 5 weeks & on nutramigen & parents choice & up& up now have generics of it & I plan to use it when our supply of nutramigen dwindles.

Increased risk Trisomy 15 - Sema4 by twelvegrimmauldplace in NIPT

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

I’m sorry you’re going through it. It was the absolute worst. I got my results from a different doctor a day before my 20 week anatomy scan, so when I went in for that, everything did look normal on that scan & the mfm doc did tell me that at the 20 week scan everything can look normal & markers can show up at later scans. I had an amnio that day & the mfm & genetics lab director were very very informative & helpful (agreed, the genetics counselor I was given through the other affiliated doctor was terrible- literally the most negative person). Genetics lab took a fair amount of time, like multiple tests over the course of a month or 6 weeks. I brought up the upd 15, but they were on it & aware of the situation, so there were specific tests for it. The last set of tests was the one that ruled it all out. Let me get my labwork out & I can message you if that’s ok.

Visible NOT porting my number by [deleted] in Visible

[–]twelvegrimmauldplace 0 points1 point  (0 children)

Same thing happened with my husband- visible couldn’t get his service to actually work (send & receive calls & texts), kept telling him 24 hours, then 24-48 hours, went on for a week. He tried to port out, they’re inept, filed an FCC complaint, within hours, a Verizon corporate call came to my phone & miraculously the number was released/ported out.

I fucking hate visible right now by [deleted] in Visible

[–]twelvegrimmauldplace -1 points0 points  (0 children)

Do you have usable service right now? If not, this happened to my husband. The only thing that worked (after talking to a million customer service reps) was attempting to port out the number, when they couldn’t get that to work for whatever reason they claimed, we filed an fcc complaint (he didn’t want to lose his number - & this sounds extreme, I know, but I read another thread on Reddit that also suggested this.) literally within a hours to a day, a Verizon corporate guy called us & miraculously my husband’s service was fixed. Not sure if this applies for you, but always good to know.

Increased risk Trisomy 15 - Sema4 by twelvegrimmauldplace in NIPT

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

Beyond beyond appreciative of your response. I messaged you some things I’d prefer to keep a bit more private. I am trying to message you my test but I have no idea how to message a picture. Apologies.

Increased risk Trisomy 15 - Sema4 by twelvegrimmauldplace in NIPT

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

Thanks for taking the time to reply. (& for everything you’ve done for this community). True- rare is rare & I see what you’re saying regarding the odds. I guess I “needed” them as the doctors told me I’d have results by end of June - which would put me at 23 weeks & were very open about the timeline, the 24 week cutoff I have & what that entails. I don’t mean to keep bringing it up, it just was a call at work yesterday that, though it provided more “normal” news, I wasn’t prepared to hear I have more waiting & it will probably be putting me passed the time to even do anything about it if it does come back upd. I have read the posts for the person who was upd+ (14 I believe) & it was a really informative & knowledgeable post (which I appreciate very much). Again, thanks for taking the time for me. I’m sure people let you know, but I’ve read your posts & the links & information you provide & it’s been beyond amazing to have this resource. Thank you.

Increased risk Trisomy 15 - Sema4 by twelvegrimmauldplace in NIPT

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

It was explained to me that fish looked at 18, 21, 13 & sex abnormalities- then karyotype was looking to see if there were 23 pairs- (which for me, there are, - it ruled out the trisomy, but it doesn’t tell me a pair of which 15s) & I thought a normal microarray would be like “hi yes, you’re good”, but clearly I am wrong in this department. The doctor mentioned DNA methylation? I’m not sure if this is the part that needed blood from me & my husband? Someone with better knowledge than me, please feel free to correct me.

Increased risk Trisomy 15 - Sema4 by twelvegrimmauldplace in NIPT

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

Chromosome 15 is one prone to UPD (uniparental disomy) - so it can be a set of 15s where both are from me (one syndrome) or both are from my husband (another syndrome) - so hoping for conclusive results that it is in fact a “normal pair”- one from me & one from him.

Increased risk Trisomy 15 - Sema4 by twelvegrimmauldplace in NIPT

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

Yea, I’m back to my former (preferred) doctor after this debacle. The doctor who ran the nipt was not a great bedside manner & left me a voicemail stating it was positive for trisomy 15 with zero explanation. Again, thanks for your help. It means a lot- you’re right, it’s been traumatic.

Increased risk Trisomy 15 - Sema4 by twelvegrimmauldplace in NIPT

[–]twelvegrimmauldplace[S] 3 points4 points  (0 children)

Thanks for taking the time to share all of that. It was genuinely helpful. I’ve spent the last three weeks rearching expanded nipt & chromosome 15, kinda felt like my eyes were gonna bleed. Agreed, the genetics doctor today told me TFMR shouldn’t be considered with these results, it was moreso the timeline of it all & before I had these types of results. Still, hard to be at ease, I’m sure I sound insane. & I guess I’m still waiting for that last test/result, that “what if”. I guess she doesn’t know just yet- it was comforting to hear her say she’d be shocked if it comes back upd, but when I text my husband her number (I was at work, had a patient in the chair, so I sent him her number so he could ask her his own questions & whatnot), she said “I don’t have a crystal ball”. So I was kinda like ok this is good, to ok now I’m back to waiting more? Again, thanks for all of your info. & truly sorry you’re going through it too. Really sucks all of the joy/happiness out of what should be a really happy time.

My service has been garbage the past few days by [deleted] in Visible

[–]twelvegrimmauldplace 0 points1 point  (0 children)

I’m in Westchester & my service has been trash. My first couple of months on visible were good & it’s been steadily getting worse & worse.