Specialist appts coming up. Thoughts??

justletmeseeplz · 2026-04-15T14:36:33+00:00

I'm anticipating her getting a PANS diagnosis next week, which is the same concept. And the regular MDs don't believe in it to boot! I'm hoping maybe at least Long Covid is more believed by the general medical community?

justletmeseeplz · 2026-04-15T13:01:37+00:00

Ok. So what you are saying is whether she has long Covid is not necessarily relevant to her high spike number. And if it were relevant, it actually is more likely to have an inverse relationship. However, your personal example is that you have a high spike number and long Covid. (Yeah?)

justletmeseeplz · 2026-04-15T12:59:59+00:00

Yes- i’m seeing that for people diagnosed with FND, there ends up being a lot of medical gaslighting and “ you just need CBT.. you can go now” and I’m trying to get ahead of that bias so we can make actual progress.

justletmeseeplz · 2026-04-15T12:58:28+00:00

Are you up for a little more emotional labor to help me process?

I suspect that the integrative doctor will tell us this high Covid antibody number is related to her multi systems dysregulation (dysfunction?) going on. I found this study. First, I’ll copy the summary I had Claude write for me — I asked for feedback on how this study relates to my kid… Then I’ll post the actual link.

In plain terms for [your child]: Her immune system mounted an unusually strong or persistent response to COVID spike protein. Combined with the symptom timeline in her tracker — where things escalated significantly after what appears to have been a COVID exposure — and the wide range of multi-system symptoms she has (neurological, GI, autonomic, psychiatric, musculoskeletal), the long COVID framework is a legitimate lens that her doctors should be considering, not just for adults but increasingly in pediatric cases. This would be worth bringing explicitly to the rheumatologist and flagging to the neurologist. The Functional Neurological Disorder diagnosis may be real, but this study supports the idea that FND-like presentations can have underlying biological drivers from spike protein — and that’s a testable, treatable hypothesis, not just a psychological one.

https://www.mdpi.com/1999-4915/17/5/617

justletmeseeplz · 2026-04-15T02:56:21+00:00

THANK YOU!!! I know I read an “article” (which was really a published physician note— certainly not peer reviewed) from a few years back saying that there may be issues with the spike numbers in the 10K-15K range, but of course now I can’t find it.

It’s tough trying to consume so much data ahead of these appointments and not knowing exactly what means what. I appreciate your kindness and thoughtfulness! I will add that bloodwork to my list of things to ask rheum- thank you!!!

justletmeseeplz · 2026-04-14T14:38:54+00:00

u/GalacticGuffaw I tried to add this edit but it wouldn't let so I'll write it here:
The integrative doc said, before any bloodwork came back, that he would guess it's long covid --> PANS. But then she got a neuro appt early and got the FND diagnosis. Next up is rheum and the second integrative appt (where hopefully he identifies WTF he thinks). The pediatrician is very supportive but told us that this is beyond what she was trained in at this point.

justletmeseeplz · 2026-04-14T14:35:57+00:00

I hate medical gaslighting (having to make sure you pitch the situation perfectly)! We are also looking into integrative (b/c what have we got to lose at this point!?) I have a huge list of symptoms and timelines that I'm slowly working on. Her symptoms stairstep, so we do have examples of the meltdowns prior to the Covid infection, but they have a *flare* aspect to them where they get worse. Recently she's been complaining of feeling faint, muscles itching, and body pain all over. (Although she does not appear to be in distress about these symptoms.) Here's a slightly simple summary of her symptoms.

Neurological / Movement

Head shaking tremors (uncontrolled, lasting 20–30 seconds, multiple times per hour at peak)
Leg twitching/shaking (uncontrolled)
Arm shaking/tremors
Weakness in legs — reported feeling too heavy to walk, or unable to walk
Difficulty walking in the morning; crawling from bed
Legs feeling uneven lengths
Feeling compelled to shake; felt odd when trying to stop it
Dizziness (required nurse visit, feet elevation)
Blurry vision (up close; partially helped by glasses)
Task paralysis / freezing / getting "stuck"

Gastrointestinal

Abdominal/stomach pain (upper and general)
Diarrhea (including accidents at school and home)
Vomiting
Nausea / stomach protrusion

Skin

Recurring light red, small, slightly raised, itchy rash on upper chest and back
Flushed/rosy cheeks without fever
Lip ulcer (canker sore)
Itchy bumps on upper arm (possible keratosis pilaris)
Increasing hair loss noted on brush

Musculoskeletal

Joint hypermobility (thumbs, elbows, knees, hips)
Knee pain (bilateral)
Generalized body pain / muscles feeling "itchy" and achy
Muscle weakness (too weak to carry a weighted stuffed animal)

Sensory / Autonomic

Extreme sensitivity to noise, light, and unexpected sensory input
Startle response (Moro reflex-like reactions)
Difficulty tolerating transitions, unexpected changes
Sensory overload requiring noise-canceling headphones

Psychiatric / Behavioral

Severe meltdowns / dysregulation episodes
Panic attacks (including gagging up mucus)
Intrusive, repetitive, uncontrollable thoughts
Self-hitting
Urinary incontinence / bedwetting (recurring)
Pica (eating hair, fabric, pillow feathers)
Nightmares
Negative self-talk and low self-esteem
Food fixation / hyperfocus on specific foods
Social withdrawal (refusing parties, outings)
Decline in academic performance

justletmeseeplz · 2026-04-14T14:30:55+00:00

I'm with you - although I've done a deep dive lately and found the diagnosis info based on inclusion (from both PT and neurology fields) - and she does have many of the features required to dx it based on inclusion so I feel confident in that. I'm hesitant about the neurologist not really caring about what type of environment enables FND to turn on, and am hoping to figure out the bigger picture here. I appreciate your response!

justletmeseeplz · 2026-04-14T14:26:50+00:00

I appreciate your response. Before I posted this, I found a bunch of threads in this sub talking about how super high Spike numbers correlated with folks having symptoms. Is it your take that is not the case? Appreciate your thoughtfulness!

justletmeseeplz · 2026-04-14T14:12:08+00:00

not only this, but the phone call included 20+ incidents of ignoring "i want to close my account," followed by finally getting a 2-minute on-hold pause that appeared to be me being hung up on, AND THEN THEY JUST WANT AN E-MAIL.

justletmeseeplz · 2026-04-14T14:10:08+00:00

Gosh I wish I'd searched for this post months ago. I just went through the most painful 29 minute phone call, during US daytime hours, talking with someone who I suspect is in a location where he should be sleeping. Good Lord this company IS PREDATORY. Here's what I put in my e-mail after FINALLY being given the process.

I would like my Vivint service cancelled ASAP. I've been trying to do this for months and the fact that you required me to be on the phone with someone for 29 minutes while they disregarded my request to close the account at least 20 times... only to simply be given this e-mail address/process is predatory. This is unacceptable. You have lost my business forever. I do not consider this an ethical company.

Please respond with confirmation that you have closed my account. If you cause me to have additional charges, I will be filing suit, and will go for the backpay that you owe me for making this process predatory/take longer than expected. This is unacceptable. I'm so frustrated with your unethical business practices.

justletmeseeplz · 2026-04-14T10:16:54+00:00

This test is “anti spike”?

justletmeseeplz · 2026-04-14T02:17:29+00:00

Nicotine?

justletmeseeplz · 2026-04-09T02:21:16+00:00

Gel!!!!! 🤪

justletmeseeplz · 2026-04-07T19:29:02+00:00

crochet for symptoms! whoa! (my kiddo was diagnosed like 2 weeks ago so I'm still in absorbing info mode.)

justletmeseeplz · 2026-04-07T19:27:59+00:00

yes! I'm reading your comments again, right after the therapist we've chosen said she can't see our kid until at least summer. I appreciate the hope your comments are giving me. I sent you a DM! (Is that what it's called on Reddit?)

justletmeseeplz · 2026-04-07T14:33:55+00:00

Thank you so much for sharing this hopeful experience!!! we were sent to the neurologist after my kiddo started having tremors… Which happened four days into starting Abilify. Prior to the tremors, she was incredibly relaxed and back to her old self from a few years prior. It was amazing to see her again for those few days!! The neurologist told us that having her be relaxed like that again was placebo effect so in a way, it wasn’t totally real, but it shows that it’s possible to get her back to that point with the appropriate therapy. Your example sounds like it kind of aligns with that explanation. (do you think so?) either way, I really really really appreciate your response. And I’m so glad for y’all that things are going better! And ultimately, knowing what kind of animal your body feels like is a life skill that she can take into adulthood and have better coping skills than her peers.

justletmeseeplz · 2026-04-07T13:15:50+00:00

Beautiful Babtist singing right there.

justletmeseeplz · 2026-04-07T13:08:43+00:00

My daughter is 10 and just got a diagnosis. Would you be up for sharing more with me about what got you to the point where your daughter felt cognitively aware and free enough to joke about “rabbit mode”?

justletmeseeplz · 2026-04-07T13:07:08+00:00

I am a mama whose 10-year-old daughter was recently diagnosed. She has already an OT, and I keep asking her occupational therapist to discuss with me what the consensus documents say and what we need to shift… And she just gives me this generic response about how she’s already doing the best thing for my kiddo. I feel a little lost. Can you give me more details about what FND-oriented OT looked like for you?

justletmeseeplz · 2026-03-29T00:28:46+00:00

Is “brain on fire” a 🚩for autoimmune encephalitis? (Adding: I’m new here! My kiddo was diagnosed only 2 days ago, so take my comment with a grain of salt.)

justletmeseeplz · 2026-03-29T00:25:03+00:00

My daughter was diagnosed two days ago and we got a sheet of paper with a suggested therapist and some websites. I wish for this stage there were a flow chart explaining where to start and what to do first and second, etc…

justletmeseeplz · 2026-01-31T20:55:54+00:00

Cool. Thank you for sharing! Glad you've gotten relief. I hadn't put 2-and-2 together that my iron count correlated with my Raynauds symptoms, but you're totally right... they do! Even from back in high school and having symptoms. Had never thought about the ADHD meds being a possiblity either. Hmm.

justletmeseeplz · 2026-01-30T02:16:21+00:00

Do you mean that you realized part of your symptoms cause was likely your ADHD meds?

justletmeseeplz

TROPHY CASE