PANDAS Network.org is dedicated to improving the diagnosis and treatment of children with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Armed with an impressive network of doctors, researchers and scientists, PANDAS Network.org strives to collaborate with subject matter experts, build public awareness, provide family support, and gather data and resources to better inform parents and the medical community about PANDAS and PANS.
PANDAS Network is a 501c3 non-profit corporation- FEIN #37-1666562
If damage to cholinergic interneurons causes tics/ocd and they don't grow back, how do more than 50% of tourettes cases grow out if it in adulthood? Tics also improve/disappear for people after treating pandas early, but isn't it the damage that results in the tics/ocd? Therefore meaning symptoms shouldn't improve after they've appeared. I've also read reports of improvement/remission removing foods and other infections. I'm not denying this isn't a part of the illness, but how can tics/ocd improve after symptoms appear if it's these no n repairable neurons that cause it? It seems illogical to me, if tics/ocd appear due to permanent damage then they shouldn't improve after treatments
How can I consult with Dr Earl? I really think he needs to hear my child’s story. We need his help ASAP and my sons story and timeline will give so much knowledge!
I have started to see some results with my pandas, using medical medium’s (Anthony William ) information. it’s taking a long time because I was sick for so long, but I’ve seen shifts in self harming behavior and the physical movements that used to happen to me during episodes. Rages are also less frequent.
Thank you for this talk. It has given me more hope for parenting and guiding our soon-to-be-10-year-old son through this PANS journey, because it has been a nightmare. We're hopeful the antibiotic he is on will sufficiently get his numbers down and get him out of this "acute" phase.
Great speech; unfortunately, this doctor does not treat children under 10 years old, and that is a real shame. It's hard to find a good neurologist that really want to help with modern medicine and not by the books.
I had Scarlet Fever at 6 weeks and developed strep at least 3 times a year while I was growing up in my childhood home, which had floods in the basement many times. I’m sure it was never cleaned properly. However, I didn’t develop PANDAS that I know of, and had a 40 year teaching career. I believe I had a rheumatoid factor after that, because I developed autoimmune diseases and mold toxicity, later in condo with mold and now have Lyme. I’ve been sick for 21 years and now have CNS cognitive problems. I have horrible pain that worsened after trauma 6 months ago. I’m afraid to drive. It’s the strangest thing! My son had meningoencephalitis at age 7, which damaged his frontal lobe. He’s 38, and has horrific headaches, Lyme, had mold toxicity, etc. He’s mentally disabled and unstable.
Do you think covid could trigger pandas/pans? My son had severe ocd, bed wetting and urinating self during the day. Abnormally stubborn. Sleep disturbance. We started oregano oil for fungal treatment, marijuana for anxiety/ocd.
This is me! Everything you are saying since I was young child. I was a very sickly child. I had chicken pox 3 times before of the age of 11. My inflammatory markers sit in the 90s. Positive ANA. I'm blown away and I'm going to show share this with my rheumatologist. I'm waiting on approval for IVIG. I have been misdiagnosed for so long.
For infants and children who demonstrated very early “soft” signs- I’d love to know what happens when you do similar studies but with mice who are pregnant and an inflammatory response is induced. I believe (based on my experience) what happens when moms are in an inflammatory state or autoimmune themselves, and how is this directly impacting the early immune system. I believe there is also research to be done on breastfeeding and mitigating or slowing the progression. Can you replicate this study with yeast, and other common causes of gut mircobiome disturbances? I believe that untreated yeast (candida) and dysbiosis could be one of the things that is not yet getting enough attention- particularly vulnerable to the immune system at an early age. With changes in food production, isn’t it likely part of the problem with “identifying one trigger”. It’s actually a cascade of factors, many of them psychosocial and historical changes in practices. I’m sure there was a point when scarlet fever was prevalent and doctors were more concerned about strep. There is a really barrier to any disease that doesn’t have obvious visible tells, and the movement disorders were just easier to diagnose.. However there are motor tells if you understand development and know where to look. To me the only differentiation is one, SC has the volume turned up on the mobility changes, while another has the volume turned up on behavior and psychological changes. Both are present in both syndromes. I wonder how many small viral hits P/P kids silently get, and perhaps fought but greatly taxed their immune system leaving them vulnerable for some time after. In short, I think it matters how many times and how close together our kids are getting immune system “hits”. Including STREsS-, which kids and mothers have experienced at higher and higher levels. Changes in food production have impacted the gut microbiome. We are farming less and outside less leading to less helminths and more mold exposure. It’s lifestyle factors beyond infection. What happens if one infected mouse is infected/exposed but has a healthy autoimmune friendly diet? How does the disease progress if given a poor diet? It’s important to link the gut since it’s so significant in strengthening the immune system!! We need research around stressed mice mothers and their autoimmune pathology would be useful. Dispelling the myth that it’s a “sudden” onset and knowing the early signs and risk factors is really going to help us not get to the point of severe psychological distress and trauma. Good on you for doing this research for advanced disease. I think we owe it to them to figure out why they are getting so sick so early in the first place.
My son is hallucinating and he is sicker than he's ever been. He's 9. His behavior changed. I've begged the Dr for antibiotics. I told them his strep test was wrong. They refused and said I'd have to wait possibly 72 more hours for the culture they sent off to come back before they would consider sending me in a prescription. I feel helpless right now.
This was 2014.....why can't I get my child's pediatrician to even believe these things are real? Community/clinic level Drs completely refute the validity of running these kinds of tests.
It is endlessly and profoundly frustrating to many of us with P/P kids that the PANDAS Network and collaborators continue to deny and obfuscate one of the (if not *the* ) most important AND PREVENTABLE reasons for the breakdown in the BBB. Statements by Susan Swedo over the years (and during this recording) about continuing to vaccinate P/P kids is shockingly dangerous and has without doubt contributed to the increased severity of in a proportion of existing P/P kids. Just *in the last 24 hours* , and in response to a single Facebook reel by a P/P-literate DC, no less than 3 mothers shared that their P/P child got *worse* (in each case developing tics) either following K or early pubertal shots. And this persistent focus on the genetics of various immunologic functions that underpin P/P LEADS UNSUSPECTING MOTHERS ***AND DOCTORS*** to believe P/P is, itself, hereditary. Stop talking about genetics, and start talking about toxic exposures and EPIgenetics. And so the gaslighting of mothers and denial of a real, chronic, debilitating condition that wrecks families and lives goes on. For those who may read this who are unaware what I’m referencing, one of the many neurotoxic and immunotoxic ingredients in vaccines is polysorbate 80: one of the Hep B vaccines, Gardasil (HPV), several flu shots, one of the meningococcal vaccines, Prevar 13 (PCV), and rotavirus. Among adult shots, it is in one each of the Tdap and shingles shots. See complete listing here: www.cdc.gov/vaccines/pubs/pinkbook/downloads/appendices/b/excipient-table-2.pdf Per the current CDC schedule, and should you be uneducated/trusting enough to allow a pediatrician to vaccinate your child, s/he will get as many as 18 doses of this membrane-dissolving toxin before they are done with their kindergarten shots. And this excludes the Gardasil and MenB shots your ped will try to coerce you into giving your child in early puberty. Why is polysorbate 80 of particular concern? Because while the CDC and your pediatrician will try to convince you all vaccines are “safe & effective”, it is the same ingredient is being used by researchers to find ways to permeate the BBB for drug delivery to the brain. Yup. That’s right: the same drug used to get drugs INTO the brain is being deliberately injected into your babies/children’s bodies at routine intervals. And they wonder why so many of our children have neurodevelopmental problems and post-infectious encephalitis? How about focusing on THIS recurrent exposure to our children?
I had PANDAS.at age 10 and I stopped eating and odd food rituals and could not stop running...I kept talking doctors I feel like my brain has hiccups... But they kept treating me like I had just anorexia nervosa !! Until my parents found a doc treating Pandas!!! It disappeared forever!
Question. Im assuming this is ongoing damage, but will the BBB repair itself eventually if we are taking care of ourselves with no medicine but a healthy diet and gut microbiome? Also, does the BBB constantly degrade throughout age in people with PANDAS or is this only prominent during PANDAS onset? Also, is there any research about how the crossing of these cytokines through the BBB are affecting mitral valves in people with PANDAS?
It explains why Stopping the illness is imperative. Yes damage can continue especially if symptoms are severe. And these actions are similar if not nearly identical for Rheumatic Fever and Sydenham chorea. Some people remit on their own in Sydenham chorea but not always. Why do some remit on their own? We don't know. No one has researched it. Bottomline if symptoms continue it can be lifelong damage to the BBB and symptoms can continue and create other bad affects. No one has followed the cases long enough but in Sydenham chorea there are casses that are lifelong
I'm curious if 98% of kids have immunity to strep by age 12, does that mean the incidents of PANDAS flare reduces at age 12 for those who do have PANADAS? Has there been a study on that? I've heard people say kids can "grow out" of PANDAS because the blood/brain barrier gets solidified more by age 12, but I don't know if there's any studies to back that up either.
Please do research on how numerous strep throat infections damage the brain and cause ocd later in life as a young adult. I had strep throat numerous times my first 20 years of my life. I removed the tonsils at 20 years of age. @ 23 years old ocd symtoms started. I believe in my opinion that strep damaged the basal ganglia causing ocd. Thanks
What happens if they go undiagnosed? They get diagnosed by a psychiatrist for schizophrenia and go a lifetime from anti psychotic to many anti psychotics?
When one has had Autoimmune Encephalitis, is Immunosuppressive Therapy typically needed for the rest of one’s life? I think my Brain and Immune System and Brain never fully became “friends” after my AE induced coma at age 13 in 2001. It literally feels like part of my brain is shut down. But all Lab Tests now come back normal. So I’m only offered psychiatric treatments that have only made my condition more severe. My situation has become dire.
Omg this video is so beautiful I cried the whole time. My son got strep 1 week ago and I’ve notice him acting different. I will be taking him to the dr tomorrow
This is incredible information! Thank you! I’m curious as to why the research presented five years ago has still not been integrated into Borrelia diagnosis and treatment? Edited to add: I should specify that I have not encountered practitioners who are incorporating this research - nor have my kids, or the people who I have spoken to who have Lyme Disease /Post Lyme Disease. Clearly there are those who are addressing this disease with the current research available. However, there are so few knowledgeable practitioners. For many of us, we are unable to afford to travel and pay for treatment as LD has affected our ability to function and work. Thank you for dedication to this field of research - our community desperately needs you and you are so appreciated!
