Our Mission To improve the lives of children and adults affected by PANS, PANDAS, and related encephalopathies.
Our Vision We aspire to create a world where children and adults affected by PANS, PANDAS and related encephalopathies obtain a timely diagnosis from informed providers and receive effective, proven and affordable treatments and support in all areas of daily living, without discrimination.
Who We Are We are experienced leaders in the PANS advocacy community. We are parents, providers and experts in our field who believe collaboration and empowered action are the keys to the world we seek: one where no one suffers through PANS and immune-related encephalopathies without access to a knowledgeable provider, insurance coverage for standard-of-care treatments or the support that comes with public awareness.
Thank You for the informative video on Pans or Pandas. Have been trying to get my son help for years, he has Pans or Pandas. Brain Surgeon & neurologists have mentioned evidence of inflammation in my son Andrew's brain, but they have no answers on what it is or how to treat it. Below is the link to the story of my son Andrew. ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-4Fq04o_TeFE.htmlsi=LTasxBshMoy6cb7e
thank you for the video information on Pans or Pandas. Have been trying to get my son help for years, he has Pans or Pandas. Brain Surgeon & neurologists have mentioned evidence of inflammation in my son Andrew's brain, but they have no answers on what it is or how to treat it. Below is the link to the story of my son Andrew. ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-4Fq04o_TeFE.htmlsi=LTasxBshMoy6cb7e
Have been trying to get my son help for years, he has Pans or Pandas. Brain Surgeon & neurologists have mentioned evidence of inflammation in my son Andrew's brain, but they have no answers on what it is or how to treat it. Below is the link to the story of my son Andrew. ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-4Fq04o_TeFE.htmlsi=LTasxBshMoy6cb7e
Stong smells can also help loads with tantrums I also believe that in black cumin oil as an anti-inflammatory agent Coconut oil in food N-a-g Chlorella
Thank you. We are currently trying to get help for our son for PANS... for almost 3 years our thoughts fell on PANDAS/PANS but we were dismissed by doctors each time we brought it up. Hoping that 2024 can see a solution for our boy, he developed a sudden seizure disorder that only occurred during illness, of which he is very prone.
when i was 3 years old i had strep (i think or another infection ish thing) and i fit into a lot of these symptoms like ocd progressing, severe (seperation) anxiety disabling me almost completely for going to school or other places, i have suspected adhd and i have tics and some other stuff (insomnia and sensitive to light and sound) do u think this could be pans/pandas? i’m not sure because i’m also gifted
Can P.A.N.D.A.S. go undetected for years from Strep throat during childhood and symptom onset at early adulthood at like 23 years of age ? My son got OCD at 23 yrs old after having Strep throat like 2 times a year for 20 years so onset slowly occurs. The basal ganglia most likely got damaged. Please if a Doctor could answer ???
It’s so frustrating… My pandas dr recommends tonsils out, but at 1hr05min Dr Swedo says it can make things worse. My son constantly has colds, but I have no idea of any of them were strep. If my son got worse after removing t&a it would be devastating.
Fantastic presentation, thanks. Wish I saw this when we first went down this path, as you reinforced things we learned and gave some new things to look at. One comment for chlorine in addition to Tricia comments is make sure you kids take a shower before going in the pool as this will reduce chlorine absorption. We have also found high quality vit C helps out (camu) as if I remember it right chlorine depleted vit C.
Is there any research or connections between Thiamine and PANS? I'm looking for answers. My understanding is that pathogenic mutations in the SLC19A3 and SLC19A2 genes can cause issues with processing Thiamine and leads to problems with the basal ganglia, which is involved in PANS. Studies have shown High dose Thiamine and Biotin can help with the inflammation that occurs in this part of the brain.
Idk but I took antibiotics and they depleted my b1 vitamins and I had horrible mental illness for about two weeks until I need my research on the medication and what I needed. There is alot of pandas symptom that sound like thiamine deficiency symptoms. I would say try methylated b vitamins and see what happens.
Go broke trying to get well , have a child with no home to live in from trying to got well . There’s no hElp unless you have a amazing Dr ( Insurenc or wealthy ) 😢 we are throw away lives . It’s all in our heads and it’s a behavior problem
I have pans and was diagnosed nearly 2 years ago now, I recently started experiencing age regression, like really recently, like in the past month or 2. I didn't know it had anything to do with the pans. thanks for educating me on that, so now I can stop worrying it's something else
As I listened to you talk about your personal experiences, I could have sworn that you had somehow bugged my home and heard our experiences. Thank you for sharing and all you do to help. We have been in this for 12 years and so many changes.
Im 14. I fit into all of these symptoms. Inever acterd or felt the way I do now until after my grandmother had walking phenomena and ever sence I don't feel like I can do anything anymore. Can't eat, sleep, do school in general, feel extremly shy and scared around people I know and trust and the ones I don't know I want to hurt for some reason, cry for no reason, the list just keeps going on and on. I feel SO bad for my father who can almost no longer take my now constant crying and screaming. im on antipsychotics and they don't work. THANK YOU SOOOOOOHOHOHOOO MUCH FOR MAKING THIS VIDEO!
@@GrantAndKelli Aw thank you so much! I hope that you daughter is doing okay. I’ve been dealing with it for maybe 10 years. I’m so sorry that you daughter and you and your family are going through this. I hope that you all are doing okay. ❤️
@@GrantAndKelli try to treat it while believing in Jesus healing power. Science is still.a blessing from.God..so.dnt shy from.treatment if avialable . Be blessed
How do I work with you Peggy? My daughter is in the midst of a pans/panda storm and this is my desperate plea for help ❤️ I am now 100% sure after listening to this 💕 Especially extreme debilitating OCD controlling her every move, physical aggression, self harm and harm to others, sad and upset a lot. She is soo sweet but if I showed you some videos I took of her she looks like someone who would be put in a psychiatric home 😢 It is just about too much for me to take and it's very emotionally draining and tiring for me as her life is driven in a world of uncontrollable behavior and OCD patterns and it's very hard to watch and live in the environment of......😔💞 I don't know who to turn to but life for us both is really horrific hard and very frustratingly depressing right now.....
Hey folks This isn’t a childhood disease Do you only work with kids? Where should adults turn on how to cope, after a lifetime has been stolen by 30 years of immune deficiency?
We advocate for all ages to get care. We are an NPO and don't provide medical treatments. This interview was with a provider who treats children, and the interview was held at the AAP, which is a medical conference focused on pediatric care. So, this video has a context.
My son hasn’t known childhood without PANS. We’ve felt stuck in an endless cycle of progressing perfection OCD, even on the best days. We haven’t thought about calming the brain until watching this. Packed with so many pearls. Thank you!
My son hasn’t known childhood without PANS. We’ve felt stuck in an endless cycle of progressing perfection OCD, even on the best days. We haven’t thought about calming the brain until watching this. Packed with so many pearls. Thank you!
It is a really informative webinar- not just on Neurofeedback but also about PANS, CBT & ERP for OCD. Dr. Roseann has helped so many. Thank you for the feedback. We wish you that you find more healing for your son.
My son hasn’t known childhood without PANS. We’ve felt stuck in an endless cycle of progressing perfection OCD, even on the best days. We haven’t thought about calming the brain until watching this. Packed with so many pearls. Thank you!
I am completely cured with no sides effect all thanks to Dr uromi on RU-vid for is herbal medication. If you have any issue you can contact him There is no harm in trying herbs....
I am completely cured with no sides effect all thanks to Dr uromi on RU-vid for is herbal medication. If you have any issue you can contact him There is no harm in trying herbs. ru-vid.com/show-UCSFLFm8CVsCMZQ8Wf3nrZLAabout
Thank you for responding . I would like to ask, just to confirm that I understood right, the difference between Turret and Pans/Pandas is that in Pans/Pandas tics has to occur in 24/48 after or during infection with strep or some other virus or inflammation? Is that correct?
