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irishmom

Sound like PANs or PANDAs?

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Hi everyone,

 

My four and a half year old had a very bad virus about 5 weeks ago. Started with frequent vomiting, lethargy for 5 days, followed by diarrhea for a few days. She was in the ER to get IV fluids and IV Zofran. In the last few weeks, what started out as odd behavior/tics with tiny episodes of aggression have very quickly turned into severe fits of rage and other serious symptoms. Below is a sampling. As I wait for a return call from a PANs/PANDAs dr, thought I would ask this group your thoughts. Thank you in advance for any of your insights.

  • Peculiar behavior

    • Needing to get into the car on the same side

    • Licking the walls

    • Focus on shapes (drawn xmas tree has to be perfect triangle, could only step on the large square black tiles in airport)

    • Had several days of eating enormous amounts of food after virus; eating appears normal again

    • Needed to put large amounts of honey all over toast, covering the entirety of the edges and bread

    • Complained of itches all over her body; was trying to scratch everywhere, but there didn’t appear to be anything on her. She couldn’t pinpoint where it was, but she was crying and scratching hysterically.

    • Wouldn’t go into school because there were “too many cars” in the parking lot

       

  • Overall irritability/frustration has increased

    • Frustrated with self/others over very small things that she used to be able to handle without a problem

    • Easily set off, then it lasts a long time to recover

    • Quicker to yell at/push brother, less patient (if he takes a toy, for example)

    • Transitions from one activity to another or leaving the house and hopping in car have been ongoing difficult, but are even more so now

      • Needs to be carried more frequently, even when not especially tired

      • Had to be carried out of school several times after not wanting to leave

      • Has missed some school due to all of these issues, even after back to physically “healthy” after virus

         

  • Personality

    • Fewer moments of “lightness”/joy

    • Not smiling as much during the course of a day

    • After long sustained episode, can “switch” back to sweet/loving/calm/happy

    • Seems to struggle especially with lots of stimulation (sounds/music/movement)

    • Episodes scare her 19-month old brother; when we tell her, that doesn’t calm her down

    • Sometimes says husband, brother, or I bother or hurt her when we aren’t near her

    • More clingy than usual with husband and I

    • Not as nice/empathetic

    • Takes a longer time to apologize, apologies don’t seem as sincere

    • Unpredictable as to what might upset her at a given point

    • Doesn’t talk and use her words as much as she did before virus; nods her head more to answer a question and seems to talk like a baby from time to time

    • This doesn’t seem like the same girl of 5 weeks ago

    • Her “normal” personality is: fun loving, funny, sweet, great big sister, interested in various activities, loves school, happy, content.

    • Need to constantly repeat requests/asks of her, this was an issue before virus but even more so prevalent now. 10-20 times.

       

  • Sleep issues

    • Frequent night terrors since the virus (10-12+ – takes 1 hour+ to calm her down)

      • Thrashing, screaming, fear, not identifying husband or me initially

    • Regularly wakes up throughout the night, even if no night terror

    • Sometimes calls out “no!” during sleep

    • Harder to put to sleep, wants husband or I to sleep through night with her

    • Overall much less nightly sleep than before the virus

    • Generally seems exhausted

    • Have tried: earlier bedtimes, reading more books, spending more quality 1:1 time at night with her, lavender scents in room for relaxation, gently body massage after baths, setting calm atmosphere before bedtime

       

  • Tics

    • Eye blinking (present before virus; but ongoing)

    • Throat clearing (present before virus; but ongoing)

    • Excessive sniffling (seems new; but ongoing)

       

  • Aggression/physical lashing out (all new to our daughter)

    • Biting husband and I (I have a large bruise from a hard bite through sweater)

    • Biting her own hands, clothing

    • Biting furniture

    • Hitting/kicking husband and I, walls

    • Banging headboard of bed, on floors, on walls

    • Head butting us

    • Thrashing body on carpet

    • Sustained screaming at top of lungs (upwards of 40 min) – she looks afraid

    • Pupils seems to be enlarged during fits, but it is hard to tell with her dark eye color

    • Throwing shoes, pillows off couch, overturning cushions

    • Ripping tape off of boxes

    • Slamming doors

    • Quickly running/darting into mudroom while screaming

    • Doesn’t seem to comprehend when there’s been a big aggressive event

    • Our primary concern is keeping her physically safe during fits of rage, but coming closer to her seems to enrage her more

 

 

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So sorry your family, and esp your daughter, are going through this. I imagine she must be very scared inside, not understanding what's going on, etc.

I am an adult with possible late adolescent onset PANS. Hard to know for sure in my case.

For your daughter, what kind of bloodwork/tests are being done??

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To answer your question, "Does this sound like PANDAS/PANS?" Yes. Absolutely. Sounds like she already had it before her illness, due to the previous tics and issues you describe, and the virus triggered a flare. I think you're on the right track. Good luck! 

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Better make sure bartonella, Lyme, Mycoplasma, and c. Pneumonia aren’t also on board....

Get inflammatory markers checked... learn about Moro Reflex integration...seems to have been effected which we see with one of ours.

You will likely need BOTH an infection fighting strategy and an immune system modulating strategy. Gettting well will be more important that school—which may be too stressful. 

I recently found a program that helps adults help kids self-regulate  which I think will be helpful with the knowledge that there brains are under attack and that they (and we) need lots of support. It’s called  conscious discipline and they have  a “safe space” concept that might be a tool to try to teach. 

Lastly, if you aren’t doing it already—try to track temps over the course of the day. We found low grade fevers linked with behaviors and ibuprofen helps some.

We are 2.5 years in and just last month starting to see the light...

Hang in there.

 

Edited by Sirena
Typi

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