I am the older sister (28yo) of two younger sisters (15yo) & (13yo) who have been diagnosed with PANS this year- being treated by Dr. Bouboulis. I am searching for any and all answers for them, in conjunction with our mother, to help them have the best life they possibly can. I would love to hear ANY and ALL comments, suggestions, thoughts, experiences that you all might be willing to share with me. Knowledge is POWER.
More PANS related info on my beloved sisters: (They live in Northern NJ)
13yo: For the past 5+ years, this sister has exhibited motor and verbal tics (usually 4-6 tics that change every so often & diganosis of TS) unilateral hearing loss, vertigo, math regression, behavior outbursts, separation anxiety- still sleeping in parents bed, no appetite, severe OCD (trash gathering included) severe ADD.
-Has at least once tested positive for Lyme, Babesia, Bartonella, RMSF, extremely low immune system, mycoplasma
15yo: Honor roll student at prestigious college prep school. No symptoms of anything with the exception of severe migrains, recent bi-polar like behavior, severe depression/intrusive thoughts, self-injury.
-Has at least once tested positive for Mycoplasma
-Has 3 copies of the MTHFR mutation
CURRENTLY: Both sisters are being treated with ABX. 13yo is on Augmentin, 15yo is on Doxy and Zith. Both also on probiotics and fish oil. We are hoping to avoid psychotropic meds for both sisters, especially 15yo, since she has such severe Methylation issues-- but may have to look at those if her intrusive thoughts/self injury doesnt get better soon.