Please consider donating to the PANS/PANDAS awareness walk! I will be walking this Saturday, in honor of my two sons whose lives have been impacted by this horrible disorder. I have joined a team of local people who share similar stories,  who share the same goal (to educate teachers, doctors and general public), and who share the same desire (to get our children healthy again)! 

Each walker who hits a $250 goal will fund outreach to 10 pediatricians. Each team that hits a $2500 goal will get materials into the hands of 250 providers!!! 

Find more details here...
https://secure.qgiv.com/event/seppawalk2019/

For those of you that do not know our story already:
My oldest son was diagnosed with PANDAS right before he turned 3. My sweet, smart and very calm child changed overnight. I took him to the pediatricians office the next day. We were very fortunate that his dr knew immediately upon walking into the room that something wasn’t right. I told her what the last 24 hours was like.... (i won’t go into some private details but i will give you the basics)
He developed horrible OCD that resulted in fits of rage. He screamed for 5 (yes 5) hours because the circle that he drew didn’t close perfectly. He started having accidents after being potty trained for over a year. He began crawling again. He became scared of simple things that posed NO threats. He was scared to leave my side.
His dr then walked out of the room and returned with paper in her hand and white faced. She read off all the symptoms of PANDAS- they were the same as my sons!! PANDAS stands for pediatric autoimmune Neuropsychiatric disorder associated with strep. My son was just in her office a week prior with a strep infection! Neither of us had ever heard of such a thing. How could something like a common strep infection cause psychological problems? His own antibodies were attacking his brain.
So now we have a diagnosis.... now what?! This was 13 years ago- finding someone who heard about it was close to impossible- let alone knowledgeable on what to do! At one time he had 13 different specialists. No one really knew what to do. He would then spend the next several years at doctors offices, battling constant infections and with each infection the neuropsychiatric symptoms would return. Each flare was different. Sometimes he would have ocd and rages, sometimes he would have hallucinations and tics.
Finally after many years of antibiotics, tonsillectomy and many sinus surgeries later (bacteria was harboring in his sinuses)- he was able to become a healthy happy child again..... but it was HELL. It was HELL on him. It was HELL on our family. It was HELL watching our child like this and not knowing what to do. 

Last month my youngest son (age 3 1/2) developed tics, irrational fears, OCD, and rage. I noticed the tics first, then crankiness, hyperactivity (If you can imagine him even more hyper), and then developed a fear about going to school- he was scared that he would get sand in his mouth (this actually happened a few weeks before but didn’t bother him at all and didn’t mention it again - but now he was terrified. He stayed home from school on Tuesday - he complained that his stomach hurt. But he spent all day playing- and didn’t complain again about not feeling well. So i took him to school the next day. His teacher ended up having to hold him for majority of day- while he was saying “it’s going to rain today we can’t go outside” .. he was trying to convince her not to take them outside to play to avoid sand in his mouth (which is typically his favorite part of the day) I pick him up from school- he screamed the whole way home- so i turn around and took him to the doctor. Once again- the doctor immediately knew something wasn’t right. He never acted like that at in her office before. She immediately tested him for strep. NO sore throat, NO fever, NOTHING indicating strep. It was positive. I began to cry immediately- i mean cry cry - that super ugly cry. My worst nightmare was coming true. He was put on Azithromycin for 5 days and is currently on prophylactic amoxicillin. He spent the next few days with OCD, rage (severe fits- very distinctive), tics, intrusive thoughts that the police were going to get him (up until this flare- always loved the police) but by day 4 between 95%- 98% back to normal. (Only a few mild things lingering- for example; only mentioning that that he didn’t want want to go to jail- and then continue playing) Even his stutter that he acquired a few months ago almost completely disappeared!!
Azithromycin worked amazing for him. But even on prophylactic amoxicillin for almost 30 days - his symptoms are returning... stutter back full force, tics returned and now he is having problems with memory and is complaining of being confused.....
This is the life of a PANDAS child. It is heartbreaking.

If found early enough most children will show improvement pretty quickly. Unfortunately, in most cases they will need a longer course of antibiotics though- some children need to be on them for years. Without proper treatment the symptoms will often return when antibiotics stop. 

The problems most pandas/pans children/parents face:
*Most doctors don’t even know to test for strep (PANDAS) when a child shows sudden signs of OCD, tics or any other neuropsychiatric symptoms. 
*Although strep is most common cause- there are many other infections that cause same symptoms (PANS) this makes it extremely hard to treat. 
*All children do not respond the same to the same treatment. Finding the right medicine, and the right dosage is often tricky.
*Not all children will recover completely with Antibiotics. Some will need IVIG treatment- and success isn’t guaranteed. 
*Most insurances don’t cover IVIG treatment and costs parents tens of thousands of dollars out of pocket.
*Sometimes teachers or even family members (who do not actually “know” the child very well) offer minimum or no support- they do this by either downplaying severity or blame behavior on poor parenting.  
*Not all doctors believe this even exists- even though there are many studies to prove otherwise. Finding a good doctor is often the hardest part.