If you are on Social Media at all, then you have seen the multitudes of posts about PANS PANDAS Awareness Day today. Some posts have just the facts. Some posts are personal. NEPANS is made up of both professionals working and those who are parents to with children with PANS and so we try to cover both points of view. I myself am a Mom who wants to support families and help provide resources to professionals so little kids like my own are helped quickly and thoroughly. Below is a short view into what it was like when our son first had PANS symptoms. It is not the full story. But a glimpse into our life with PANS. After you are done, please share at least one of the resources on this website. Awareness really does spread one person at a time. It was one person that told me to look into PANDAS. You never know who you can help by sharing what you know. And last but not least, tomorrow might not officially be PANS Awareness Day but the sharing should not stop. Thank you for help. Thank you for reading.
Gabriella True, NEPANS Board President
Timmy was diagnosed with PANDAS in addition to his Autism diagnosis. He was one day not his happy self. One day. Boom. He was miserable.
-He had severe separation anxiety and threw up every day at school
-He self limited his food choices and this is the kid who is obsessed with eating
-He had to have two bites of food at once or it was a disaster
-Gains, although few, he made at school were all lost
-His eyes were constantly dilated
-He screamed and sobbed constantly, pulling on my arm begging in a non-verbal way for help. That really did me in emotionally
-Sleep? No. Worse after it had gotten so much better
-Peeing everywhere constantly.
-He would flip the switch of two toys on and off for hours
-Then came the tic
-Then the vocal tics were tics and not his usual vocal stim
-Almost forget about the skin picking on his head.
We flew across the country from California to Florida to get help. Xander helping with all the bags as if he was an adult and not a 2nd grader. Strep titers through the roof and strep in his gut. One round of Zithromax and the tics stopped and most of the sobbing. One week off and it all came back. Second round of Zithromax and he ate chicken as his first choice, his tic stopped, he stopped crying. Then he started staying in school. Then the most amazing moment took place when he got home from school and locked onto the picture of a baby on the diaper box. He had not looked at a picture of anything since what might have been ever. The zithromax and killing those bugs released part of his brain and opened up an entire world for him. We can’t go anywhere without books or his ipad so he can look at pictures. He has had flares since. He will have flares in the future. He is in a flare right now from a loose tooth; it is the worst loose tooth flare yet but it will pass. The prophylactic dose of antibiotics he is always on is not helping enough. I just never want him to be as miserable as he was and I never want him to regress so much again that he stops looking at his picture books. That would break my heart.
Please share some of these images, stories, and fact sheets with anyone and everyone. I meet parents EVERY SINGLE DAY that have never heard of PANS PANDAS. Let us spread awareness one person at a time and help a child from struggling needlessly for so long with PANS PANDAS.
I am thankful to work with NE PANS/PANDAS Parents Association on our mission to help the community at large become more aware and understand more about PANS PANDAS.
NEPANS Board Members & Special Guests
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