Our PANS/PANDAS story part 1 - How it all started

On December 24th, 2022, two days after our daughter’s minor respiratory infection with fever, we noticed a change. Until that day, she was a very social, cheerful, affectionate, curious child. That day, she woke up different - a bit absent, withdrawn, and sometimes almost depressive. As if she suddenly lost some of her childhood innocence and carefreeness. She left the Christmas Eve dinner after only 15 minutes, hardly eating anything, and sat alone in the other room, not wanting to interact with anyone. The Christmas presents only gave her joy for a very short time; then, she lost interest. She used to laugh like crazy, but now it was suddenly hard to make her smile.

Something felt deeply wrong.

These strange states came and went for the following weeks. There were hours, sometimes even days, when she seemed to be herself, but more and more often, her personality would suddenly ‘switch’ - sometimes literally from second to second.

A few weeks later, she went down with flu (though it seemed mild). Right after this, she got dramatically worse. New strange symptoms started emerging almost daily:

• Extreme mood swings and irritability. She would suddenly go from laughing to crying or rage for no reason. It was like walking on eggshells every day.
• Anxiety attacks. Especially around bedtime or when ‘separated’ from me (even if I was just in a different room). She struggled more and more to attend kindergarten, so we stopped sending her there (of course, her twin brother as well, as their bond was too strong to separate them). She felt safe only at home.
• Sleep disturbances. She lost her ability to fall asleep normally. She would get extremely agitated around bedtime - rolling from side to side in distress, sometimes for 1 or 2 hours. There was no way to comfort her - she wouldn’t communicate with us. She also started bedwetting and grinding her teeth severely during sleep.
• Sensory hypersensitivity. As if she got noise, light, and touch sensitivity from one day to another. She would often cover her ears shut and close her eyes, moaning in distress, or hide herself under the blanket. Clothes started bothering her. She chose to spend many days at home without any clothes on. When we went out, she often said there were too many people and wanted to be back home.
• Somatic symptoms. She started having random chest pains, heart palpitations, breathing problems (especially when lying down), hyperventilation, fatigue, headaches, belly aches, nausea, hot flushes, and strange sensations in different parts of her body, especially her legs and feet. Her ‘cardiac’ symptoms got so bad one night, that we took her to the emergency room, fearing post-infectious heart inflammation. But they checked her heart, we did some follow-up tests, and we were told everything was fine. Of course, we saw a pediatrician, too. She ordered a lot of blood work, stool & urine tests, abdominal ultrasound, etc., but everything also came out fine. It didn’t give us any relief, though, as it was becoming clearer and clearer, that all this stuff must have its origin in the brain, and it was scary.
• ‘Seizure-like’ episodes. Then the scariest stuff came. She would suddenly tense her whole body, stiffen her arms and hands, and wave them around, clench her teeth, and kick with her legs (as if she were riding a bike), screaming, ‘Oh no, it’s coming again, mum, help me!’ or ‘The world is going crazy. My brain is going crazy!’. She would have hallucinations. She shouted, ‘The room is getting longer!!’, ‘Mum, why is your head so big!’, and ‘My legs and arms are getting longer; everything is getting longer!!’. The following day, after such attacks, she would be utterly exhausted and struggle to walk or hold a glass of water.She would also suddenly lose the ability to speak. She tried, but couldn’t get a word out. She could only point to things or tap on my shoulder to signalize ‘This again’.

During one of these attacks, she escaped and hid herself. We found her sitting in the corner of a dark room, unresponsive, staring blankly into space. We flashed the light in her eyes, but they didn’t even react to light. We freaked out and rushed to emergency the next day.

We then spent 11 days at the Pediatric Neurology Ward (in one of the major pediatric hospitals in Poland). But that’s another story.