Pandas/Pans Testing for 5 year old

[Kellbell98]

This is my first time to post, so please bear with me. My son is 5 and has had questionable PANDAS behavior since he was 18 months old. He had multiple ears infections from infancy until he received tubes at 16 months of age. There also a time period around this age where my husband, son and I had strep throat continuously for 2 months back and forth - we were back and forth to the docs and seemed to be reinfecting ourselves. But we got over it! Or did we... From that point on our son started showing a lot of tantrums and aggression. He would hit himself when he would get frustrated. He was so OCD with his toys, food, etc. and change was not good for him. He developed sensory processing disorder and showed so much fear about everything! After consulting with his pediatrician about PANDAS, I was basically laughed at and told it was all developmental and welcome to the terrible two's. We have had him tested for autism (negative), consulted with a psychologist, enrolled him in OT, ST, and play therapy and nothing seems to help. He is developmentally delayed and his fine motor skills are no where close to where they should be. Something is holding him back and my gut tells me it's bacterial/viral in nature. Although his aggression is better, we still so so much inflexibility, lots of OCD... he also also a chronic smell that comes from his nose/mouth area. We have had the hardest time finding a doc that will test for PANDAS. We finally found a guy in San Antonio close to where we live, and he performed a large amount of blood work. When results came back he said "no PANDAS", but he only did the the Antistreptolysin O Ab (38.1 IU/mL) and Anti-DNase B Strep Antibodies (<78 U/mL). I've been reading where strep tests can be negative but a child can still have PANDAS. Not that I'm convinced that my child has PANDAS, should I request certain testing to rule it out? I've read about the Cunningham Panel by Moleculara, but I know it's pricey. At this point, I don't care. We just want him better! Any ideas or suggestions on testing would be greatly appreciated!

 

 

[bobh]

We all want a definitive biomarker for PANDAS/PANS, but it is not to be had.  The Cunningham Panel was never touted as a true biomarker, only as indicative - but even that is now in significant question (see below).  Given that, a better choice for your money would be to book one of the top PANDAS/PANS experts that have had extensive case loads.  Those experienced experts will know that strep blood work coming back low (when symptoms have been present for a very long time) does not necessarily mean no to PANS or PANDAS.