Hi, I am new to the forum and I found this thread while searching for cycling behaviors pattern. It's been 2 years now, @babsmom, @ibcdbwc, I hope you found help for your children and would appreciate if you can share how your boys are doing now.
My 10 yo son, with ASD diagnosis, flares every 4-6 weeks with OCD, separation anxiety, severe irritability, SIBs and crying. Excessive urination and thirst, cold hands. This is how it looks like, but the core issue seems severe migraine headache that he was not able to communicate in the past. The onset is always sudden - within minutes - and it lasts a week, then resolves spontaneously. I am aware these are all PANS symptoms, but I tend to hear/read about much longer flares.
The flares used to happen during full moon, but it doesn’t happen anymore since he’s been on high dose melatonin for migraine prevention. He has Mast Cell Activation Syndrome and does have mast cell related symptoms e.g. flushing and increased MCAS lab results during flares. Treatments for MCAS help him, but not for flares.
It all started at 5 yo together with chronic diarrhea, regression of skills and cognitive decline to moderate intellectual disability. These were all reversed with treatments, but flares - only partially or for some time. Now they are getting worse. Does it sound like PANS? Does it happen in PANS to have so severe flares resolving on its own within a week and cycling with that regular pattern?
I would really appreciate to talk to parents who experienced something similar…
