Murica

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Hell of a month is an understatement - Vent

Feb 27, 2025, 10:40 AM

Three weeks ago daughter got an infection and we believe that it caused something called PANS (Pediatric acute-onset Neuropsychiatric Syndrome).

in the last two weeks, it's like the daughter we've had for 9 years has been a different child with Major panic attacks, awful stomach pain, food aversions - lost 20 percent of her body weight (yes 20 percent in two weeks), severe separation anxiety (she refuses to even be on a different floor of the house than us), cognitive decline, possibly some motor skills impairment (slight), some OCD tendencies and much more.

I spent Monday-last night in the hospital with her. MRIS, ultrasounds, EEGs, thankful to be out but still no one willing to diagnose as it's a 'controversial diagnosis'

Been to two urgent cares, two hospitals, two pediatricians, one psychiatrist, one neurologist and still feel lost.

Time for specialists. I imagine we'll be traveling for them as they are few and far between (and NOT affordable)

Wife is attacking from a school perspective with a 504 plan for accommodations but they are pushing back hard, luckily a good friend is a school administrator and is guiding us. She's also exploring homeopathy and were restricting diets, etc - anything that can possibly help.

Looking more likely that I will be quitting my career to homeschool and be with her more. Having discussions this weekend about what the future may hold.

Man, i can't believe how much life is changing in a few weeks in my upper 30's. Can a lunge lurker get a virtual hug?

sorry but just needing to vent, thanks for any thoughts.

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issues, don't stop until you find a doctor who will listen to you. You as the parents know your child and what is not right. Mama's intuition is not to be ignored. Find the best neuro in your area and go there. Pediatric specialists are worth the travel time.

Going through the school system to get accommodations is tiresome, we received good advice to go see a private neuropsychologist for diagnosis/accommodation request. It cut through all the red tape and backlog of the school district psychologist. Honestly they are probably overwhelmed, and its easier to get your own doctors to provide recs and present those.

This was 3 years ago for us now, but that was a really dark time for me... and I probably have some PTSD. Make sure you as parents take care of yourselves and each other.

Hell of a month is an understatement - Vent

Wow that's intense, venting is in order for sure. Sending hugs and strength***

Thank you so much, I appreciate it! There's not a good guy-cry spot for me

TNET is a great place to vent sometimes, especially when someone is being

I'm doubling down on the vibes I'm sending up to the mountains right now.

Thank you Tig, I greatly appreciate it. If this is in the cards for me then

Re: I'm doubling down on the vibes I'm sending up to the mountains right now.

#### it man that is scary

Thank you so much! If you're a parent i'm sure you can relate to

Re: Hell of a month is an understatement - Vent

Thankfully I am not the primary breadwinner, but well take enough of a hit

Re: Thankfully I am not the primary breadwinner, but well take enough of a hit

Thank you for the kind thoughts, I really appreciate it. Kind of laying it all

Re: Thank you for the kind thoughts, I really appreciate it. Kind of laying it all

ALL the good vibes are headed your way. Super scary and I know it is frustrating

Thank you very much Greenr, I really appreciate it.

I think the worst part of these "events"

Agreed, I dont think it'll settle until we get a proper diagnosis,

On that note, one thing you can be sure about is that any decision you make

I am tremendously appreciative that you brought forth this sentiment. TY***

Hope your medical team can get it solved and you can get back to a normal life.

Oh man, my heart goes out to you.

Hopefully they are healthy and happy now!

Re: Hopefully they are healthy and happy now

Re: Hell of a month is an understatement - Vent

Thank you so much!***

As the mom of a kiddo who also experience rare autoimmune/neurological

Ok I just googled PANS, and it looks like a type of autoimmune encephalitis

I am thankful for your kind thoughts and advice.

Yes for the most part, he is fully recovered and back being happy and

Haven't lived that but

Thank you very much MauldinT. Greatly appreciate it!***

Wow, praying for you

Thank you so much. I hope your child is ok as well!***

Well, that sucks...

Daughterof was diganosed with PANS after many tests about a year ago.

Re: Daughterof was diganosed with PANS after many tests about a year ago.

TY***

Thank you so much for the feedback, will be looking into that.

dude vent away. nothing more precious than our kids.

It's uhhhh, hard not to find someone or something to be mad at

My heart goes out to your family. I'm thankful that you're in a position to put

Thank you so much for the kind thoughts, really appreciate it!***

Late to the thread here, but T's and P's she gets better soon.

Thank you for the response, really hard to not get caught

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