Posted , 77 users are following.
I am the parent of an 11 year old diagnosed with PANDAS. I'd like to correspond with other parents whose children share this diagnosis; perhaps we can share information, experiences, and hope.
9 likes, 128 replies
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marta88095 L_Haven
Posted
Im the Mom of 19 year old diagnosed with Pandas ,she is taken antibiotics ,but I dont see any improvement. also is trying a Naturist that does accupunture with lase My kid says is helping to reduce her fears.
marta88095 L_Haven
Posted
I'm in Florida , anyone of you please have a Dr. inOrlando florida or close by. to help me with a Phone #.
my doughter 19 years old was diagnose with Pandas.
is so hard to face this situation .
GMT111 marta88095
Posted
marta88095 L_Haven
Posted
Jamierj L_Haven
Posted
My son diagnosed with PANDAS last December. Before that he was diagnosed with ADHD, ASD, SPD, OCD, Social and anxiety disorder. He is very smart but school is hard for him. He gets I trouble at school for some of the things he says and his behaviors. We are now being told that he can't return to his school this coming year and they prefer for us to send him to a different school in the district that has a behavior program. As a teacher I understand that you have to consider everyone's safety. My son sees things in black and white and tries to be the enforcer of rules. Right now we are lost and feel very helpless in what to do for our son. His PANDAS diagnosis is new and we are still trying to get meds sorted out. I would like to take him off of everything but not sure if that is the correct choice. I've read the studies about certain drugs causing the psychotic episodes to be worse. We see a psychiatrist now for treatment but even with this docotor I feel that we are not getting anywhere. My son is not learning in school because he can't focus on his eduction due to wanting to "get rid of the bullies". Does anyone have any advice for two lost parents wanting to help their son in becoming a successful person one day? We are now thinking about hiring an advocate to help us with school issues.
darianadia L_Haven
Posted
where he works from. Desperate !! and your help would be much appreciated.
thank you and God bless and wish you well for your son and family.
iratripathi L_Haven
Posted
alison38593 L_Haven
Posted
Researchers at Providence Health & Services are studying children with a diagnosis of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) or Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS). If your child has received this diagnosis, please take 20 minutes to complete this confidential survey to help us better understand these disorders and how they affect families.
https://forms.gle/E2teVmKTkE7fGoqTA
kris82517 L_Haven
Edited
I've found Neuroimmune Foundation to be a great resource. They have things just for patients and families: https://neuroimmune.org/patient-and-family-resources/ . And recently published this: https://neuroimmune.org/clinicians/digital-pans-guides/.