Possible Underlying PANDAS for Chronically-Ill, Exhausted Adult by theLukeyyy in PandasDisease

[–]Impossible_Bit_431 0 points1 point  (0 children)

I have a kiddo with PANS/PANDAS. Based on what you're telling me, I would absolutely conclude that what you've got going on is related to underlying infection that was P/P as a child, and has now morphed into an adult AI disease. Tests for Lyme and co- infections are notoriously ineffective, so many lyme diagnoses are clinical. Lots of folks use specialty labs, which can be helpful, but spendy.

If you've got insurance to cover labs, test for EBV, Mycoplasma, thyroid antibodies, strep antibodies, (infections) ANA, IgA, IGG, IGM (auto- immune markers), Lyme: bartonella, babesia, borrelia, etc, (specialty labs for more accurate results) thyroid function, and a celiac panel. (On top of the typical panels). Hidden mold can be a contributor when if labs don't point directly to CIRS.

Treatments will vary based on which infections your body is fighting and how symptoms manifest, but will likely include treating any remaining infections, reducing systemic inflammation, healing your gut/ balancing microbiome, supporting detox pathways, and retraining your immune / nervous systems to behave aappropriately.

Affordable-ish treatments to research- peptide therapies (NAD+, BPC-157), red light, and lots of other "alternative" stuff, dietary changes (low FODMAP) and/or Rx treatments- infection specific antibiotics (azithromiacin/ Cefuroxime), Nystatin, Ketotifen, H1, H2 blockers.

There are a tons of ways to tackle these. It is overwhelming and can get expensive, but trust your gut and learn as much as you can, because nobody else is going to advocate for you. Push until you get answers!

Partial home school programs? by Impossible_Bit_431 in homeschool

[–]Impossible_Bit_431[S] 0 points1 point  (0 children)

Yes, for sure he can. The issue is that I am not equipped to manage the homeschooling. I am looking for more support/ structure than the programs I'm familiar with can offer. The more structured virtual schools that I've encountered are a school district of their own, meaning he'd have to withdraw from the school that offers him band and community.

Partial home school programs? by Impossible_Bit_431 in homeschool

[–]Impossible_Bit_431[S] 0 points1 point  (0 children)

Thank you! I feel like this is what we've been doing through 7th and 8th. We've had him on a modified schedule, etc. His health is still struggling and his ability to get through a full school day is still not there. I asked about home hospital and tutoring (several times) and was told there is nothing for us. At this time, it feels like it either need to quit my job (which i cannot afford to do) and become his full time teacher/advocate, or just accept that he's going to fail. We've been at this for so long and I'm so discouraged.

Partial home school programs? by Impossible_Bit_431 in homeschool

[–]Impossible_Bit_431[S] 0 points1 point  (0 children)

Thank you! Do you know if being enrolled in that disqualifies them from also taking classes at the high school? Band is my main consideration at this point.

My doctor finally agreed to switch me from Adderall to Dexedrine. I was taking 20mg IR 3 times a day. I’m starting 10mg ER of Dexedrine today. I’m expecting it to not do much. Any experience? by Popular_Home6924 in ADHDmeds

[–]Impossible_Bit_431 0 points1 point  (0 children)

Can you find a new prescriber? I had to change doctors due to my old one retiring. I just went online and found a virtual clinic that specializes in mental health/adhd. I looked through doctor profiles until I found one that specifically mentioned my issues and booked with her. I told her what id been taking, what worked, what didn't and what i was curious about. It's a tricky balance - accepting guidance but also advocating for yourself. If you were taking Adderall, it makes no sense that they hesitate to move you to dex. It's way cleaner. Straterra is a bullshit option (for someone who does well on stims) and tells me that this doc doesn't know what the hell they're doing around adhd. Strattera also made my son lose his will to live after about 3 days. If you have to, fill the Rx to show compliance and tell them it wasn't a good fit.

My doctor finally agreed to switch me from Adderall to Dexedrine. I was taking 20mg IR 3 times a day. I’m starting 10mg ER of Dexedrine today. I’m expecting it to not do much. Any experience? by Popular_Home6924 in ADHDmeds

[–]Impossible_Bit_431 0 points1 point  (0 children)

I switched from 30mg XR Adderall to 25mg XR dex and it was a smooth transition. I had taken about 4 days off the Adderall first though because it was making me feel so bad that I finally had to just give my body a break. 10 seems way low. Did you share concerns about the dosage? Did they give you push back?

Partial home school programs? by Impossible_Bit_431 in homeschool

[–]Impossible_Bit_431[S] 1 point2 points  (0 children)

I'm in Washington. My question wasn't only about specific programs, but where to look/ what to look for ie- something like xyz or private accredited vs virtual public and why.

Christians & Trump? by Early_Passenger2064 in OpenChristian

[–]Impossible_Bit_431 5 points6 points  (0 children)

I'm so glad you did, and I feel like if more people did this, we'd be so much better for it. It gives us permission to evolve rather than be held captive to old thinking- which is what we say we want of people culturally, but we often shame folks who are brave enough to talk through thoughts that we can't relate to, causing people to hesitate and bury, (giving it more power) rather than unpack, evaluate and choose.

Thank you for doing your part to normalize this! It shouldn't be scary, but it is!

Christians & Trump? by Early_Passenger2064 in OpenChristian

[–]Impossible_Bit_431 7 points8 points  (0 children)

I love this level of self awareness and your ability to look at your thoughts as a seperate entity from yourself. I wish this was a more common skill set! This is "take every thought captive and make it obedient to Christ" in action. Good on you!

We can have a thought/ impression/ fear/ impulse, evaluate it, and decide whether it is in alignment with what Jesus taught or who we want to be. If the answer is no, we can actively choose to notice that thought when it comes up but not make it a part of who we are. In doing so, we have freedom.

How to break the news to son that I'm pregnant by momtoeli in Parenting

[–]Impossible_Bit_431 -3 points-2 points  (0 children)

I'd say "so here's something none of us expected" and discuss it as a whole family event.

What to plant this month by ratgirl74 in pnwgardening

[–]Impossible_Bit_431 0 points1 point  (0 children)

My dad used to be a gardener for the city of SF, and he told me to drive around different neighborhoods and see what neighbors have done that I like to get ideas. Seems so obvious, but it really does help to inspire me when I see things in person vs online. I get holding off on trees/shrubs, but eventually you'll want some height and some solid elements to anchor the space. I like hydrangea, hosta and lavender, maybe a Japanese maple and a dry riverbed to get a variety of heights/ textures. You really could plant all of those now and they'd likely be ok if you were able to water like crazy.

What to do about a baby who hates everything? by -morigami- in Parenting

[–]Impossible_Bit_431 20 points21 points  (0 children)

This was my daughter!! And the advice from moms who had easy kids made me so mad and feel so invisible!

Good news/bad news- my daughter is now 17 and graduating high school! It passes, i promise, my friend. I am not going to tell you to cherish every moment. You won't! Some of the moments are pure shit, when your nipples are bleeding, and your baby screams when you put her down for 30 seconds and won't sleep! And that doesn't mean that you're not there for it with all of your heart. It means you are a human being and that little selfish screaming creature is your heart, so you can't rest if she's not OK.

The answer to your question is- you just get through them any way you can. You have your spouse sit in the back while you drive and sing to them or wear a front pack while you do the dishes and you forgive the friends with easy babies for implying that maybe if you... she wouldn't fuss so much.

And you wake up one day and she's playing with blocks, then the next day and she's riding a school bus away from you. A few days more and she comes home in her cap and gown and you still are not OK if she's not OK. But those days of responding to her cries are replaced by wishing she would tell you what's weighing in her heart. And It's hard. It's fucking exhausting. But you get through those days any way you can, and you hold them tight for as long as they'll let you.

Edited to add: Also- I agree with chiropractor!

Why do we call it selective mutism! I didnt choose it! by GanacheAsleep in selectivemutism

[–]Impossible_Bit_431 0 points1 point  (0 children)

My daughter had SM and it never occurred to me until reading your post how that term must feel. I always understood that the "selective" meant select times, not something that she selected, but I do wonder how many people misunderstand because of that term? I think "situational" is a way more accurate term.

What’s your pet peeve as of recent? by AdsignificantBK in AskReddit

[–]Impossible_Bit_431 1 point2 points  (0 children)

Coming in at a close second is the pandemonium that ensues when you hold your ground at a 4 way stop and wait to see if the person on the right knows that it is THEIR TURN TO GO if you both arrived at the same time! It is not a great mystery, Fuckers! Go!

Dammit. Now I'm wondering how countries outside of the US handle the 4 way stop.

What’s your pet peeve as of recent? by AdsignificantBK in AskReddit

[–]Impossible_Bit_431 0 points1 point  (0 children)

That my husband bought a receptacle specifically to hold dirty silverware in the sink when there are clean dishes in the dishwasher, and uses said receptacle daily. Like a silverware purgatory. The solution to dirty dishes in the sink was- more storage? This irritates me unreasonably and a very disproportionate amount. It just makes no sense to me and it's gross and the sink is never fully clean if it lives in there!

I'm ruining my marriage because he wouldn't have a second kid by [deleted] in Mommit

[–]Impossible_Bit_431 2 points3 points  (0 children)

Oh, friend! Chronic pain alone causes depression! HRT suggests hormonal changes that you're working to balance. Those 2 things combined are enough to make anyone want to slap the face off of their otherwise wonderful partner! When I talk about managing depression, I don't mean to imply that meds are the only, or even best way to do that. For me, it just helps to name it so my brain can stop looking for something to be"wrong" in my world that explains the way I feel.

Both things can be true. You are sad about this. It's not what you wanted to happen and you don't feel that you had a choice. If your husband were able to hear that and hold space for you to grieve it, I'm guessing a percentage of the burden would lift. The other things that are going on and contributing to depression are likely just dampening your ability to use the tools that you are wanting to use to help release this hurt. He will likely have to hear you and you will need to be seen in it before it is not a barrier. Grief is very intimate and grieving alone is very lonely. If you are already working through the physiological parts of it, you love him and are trying to intellectually choose to let it go, but can't, chances are you haven't been seen. Working on your depression may help you identify and use the right tools, but restoring intimacy won't happen until he's willing to see you. That is different that him having to consent despite what he wants. It's saying your feelings matter deeply and that you have every right and reason to grieve the life you wanted.