We are new to PANS/PANDAS. After weeks of research I'm certain my 7 yr old son is in PANS/PANDAS flare. 18 months ago he started having frequent urination (day/night) that would come and go for no reason. He also had bet wetting. Our GP did all possible tests and discovered nothing. He's always had poor gut health and gluten/diary intolerance. Late Oct 2016 he had a strep throat (clinical diagnoses). Throat swab was never taken. Mid Nov we noticed him making facial grimaces, licking his mouth (red ring around mouth was there), super irritable, pupils dilated on and off. He also became very hyperactive especially in the evening and it became so hard to make him go to bed. He started refusing to play his piano saying it is too hard. His focus seem to deteriorate except when playing video games.
Mid Jan he started vomiting, had stomach pain and headache and was very weak (no fever, no diarrhea). Both me and my husband had the same virus and similar symptoms but only for 2-3 days. The same week he started taking showers. Nothing could stop him! His symptoms were much worse in the afternoon and evening. Few days later, same symptoms came back much harder. In the ER they discovered high blood pressure and he eventually had PRES (brain seizure). We spent 11 days at he hospital and doctors discovered nothing. Unfortunately, they never tested his ASOt. His autoimmune panel was negative. At the hospital, he continued to take showers, had major fight/flight responses, felt like hot flushes. He has redness on his face on and off that looked like Lupus butterfly. He became very irritable and constipation was very bad. We went home with no answers after his blood pressure self-regulated.
In the first days we noticed he started talking and singing gibberish language. I also noticed he had short term memory issue. Facial grimaces became very noticeable (eyes rolling, face twitching, tongue sticking etc.) Few days later it was like someone turned on a switch on his behavior. He started talking about suicide, not caring, he behaved like he was possessed. We were walking on eggs around him. He started having rages (run for a knife to kill me, throw chairs around the house). His strength was unbelievable during these rages that it took my 6" husband to restrain him. His voice would change and became very autocratic during these flares. He still continues to take his showers in the evening; always has to eat after that shower. He could not stand clothing on him (has to sleep naked); his always been too sensitive to clothing tags, smells etc. His pupils were very dilated during these flares. Every morning he would wake up mad. He craved sugar. He would go from depressed to full of rage. One night he was hitting a pillow for over an hour to the point his knuckles were almost bleeding. Moment he would come out of his flare, he would come to me and say "Sorry Mum I don't know why I'm doing this."
The other morning I noticed he was playing piano with his fingers while sleeping. Symptoms come and go like crazy. In the meanwhile, strep was found on opening on his penis and in his stool among with 2 other aggressive food poisoning bacteria (which makes us think that was the Jan trigger while he was already in PANS flare). Stool test showed that probiotic is not even cultivating in his gut due to bacterial overgrowth. We had whole family tested and staph was found in his Dad's and Brother's sinuses. They are being treated with abx.
After reading about hand writing and math skills, we checked his school agenda. (note that he always had the most beautiful handwriting a kid can have). Before he crushed mid Jan his hand writing became illegible (his teacher sent note home wondering what happened!). At the age of 5 he did grade 2-3 math (he was coded as gifted student 2 years ago). He is struggling now with basic math. He could not remember our home phone number and refuses to do any homework or reading. Is is possible this is not PANS/PANDAS??? During his acute flare, he used tons of inappropriate words and body movements making us shocked (he still occasionally does it).
We changed his diet and started with everything natural to help (curcumin, 2 other probiotics, olive leaf extract, digestive enzymes, tons of chia/flex seeds etc). We also started him on antibiotics (Augmentin). He seems to be getting out of this flare now. We use melatonin in the evening which seem to calm him down and help him fall asleep.
After researching and stumbling upon PANDAS (after one of nephrologist made a comment that strep might have gotten into his kidneys and caused high blood pressure and seizure), we are almost certain that he was in PANDAS flare when another 1-2 infections hit his little body and pushed him into another severe flare. His ASOt is just slightly elevated (200 upper limit, his is ~270).
We are waiting for his Cunningham Panel test to come back and see what else we do now. Our GP and naturopaths are very supportive while our pediatrician (who is suppose to get us back into the system) is beyond dismissive and cold. His suggestion is to place us back in line for neuropsych (months waiting time).
I have read everything I can find on PANS/PANDAS, watched videos, read stories, talked to the parents. I could not find anything else that fits all these symptoms. One things that does not fit is the high blood pressure and brain seizure. Is it possible that could happen when child is already in a flare? Is it possible that my son fits more into PANS then PANDAS? He has no food restrictions and is not clingy to me either. However some days he refuses to go to school. We cannot make him go. He cannot explain why is he taking his showers, Said he simply has to take them.
Anyone out there with a similar situation? Is it possible that strep was hiding all this time in his bladder and caused on/off frequent urination, bed wetting? And when he got another strep infection in Oct, it pushed him in milder flare; Then another infection in Jan pushed him into severe flare? We live in Canada where PANS/PANDAS is not even a recognized diagnoses. When I brought it up with the ER doctor he said my son does not have it as he is not washing his hands all the time! His ped said he saw two cases in his career but also never heard about Dr. Sweedo or Cunningham panel test. He told us in the nicest possible way to suck it up and go back to routine life. We are mad, confused, scared, worried in 24/7 crises. Both me and my husband are on the edge of loosing our jobs. Any advice, personal story will help.
We are fearing his next flare will be worse so IVIG is an option (we received a contact via another family who did it). Thanks all!