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Showing results for tags 'pans'.
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Our adult PANS dd is having auditory and visual hallucinations, ONLY at night, and ONLY in her lower level bedroom. These did not occur in our previous home. Our current home had very high levels of radon when we purchased it, but a mitigation system was installed. We are in the process of having it...
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Hi, I'm a 17-year-old from Australia and suspect that all my conditions that I've developed since I was 14 may all be caused by PANS. I have had three sudden-onsets of symptoms, in June 2018, May 2020 and January 2021, all with various psychological and neurological symptoms which have resulted in n... -
I shared this on the OCD forum as well, but as so many with PANS/PANDAS struggle with Intrusive Thoughts as well, I am posting it here too. -
**Approved by Forum Admin** Parents and Carers Needed to Participate in Research Study! Do you have a child aged between 5 and 12 years with a PANS/ PANDAS diagnosis and currently live in either Australia, UK, USA, Canada, Ireland or New Zealand? Researchers at the University of Newcastle, Aust...
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Hi All, I'm new here and I'm wondering if anyone else has come across these types of tics, and could it be related to PANDAS/PANS? I guess I'll give the rundown of our situation for background. My daughter started having tics at age 12. They started after she was really sick (sore throat, hea...
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Hello Everyone, Brand new to this forum and honestly believe I may finally be going in the right direction. After 2+ years of ER visits, doctors visits, meds, meds, meds my son is in a very severe condition. Past 2.5 years with my son Jonah have been a nightmare and nobody ever mentio...
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So at the doctor he says pandas seem unlikely. So said maybe cough syrup or tesslon perls induced phycosis. Even said my daughter my need to stop taking cough syrup all together. She hasnt had any in 3 days. Anyway he did say he would order prozac. I was livid. Im sorry to step on anyones toe...
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Ds 15 diagnosed at 10. Three long years homebound and once PANS under control we had post viral CFS. He is healing and physically stronger than ever he is even on sports . But still emotional and focus is way off ADHD and he is beyond messy. I don’t mean to sound unappreciative. We are so thank...
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This is a case report about a 14 year old boy with psychiatric issues. Turned out to be PANS. Published in the Journal of Central Nervous System Disease, just a few days ago. There are images of the Bartonella rash. Just like the rash my dd has had in past. https://doi.org/10.1177%2F117957...
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So I haven't been on this board in a long time. Why? Because my two PANDAS are doing so great it is not a "thing" anymore. But I wanted to come back and offer hope and encouragement because most people on the boards are struggling and the success stories are off the boards living their lives. I...
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DD1 was on 6 weeks of Azithromycin. Little/no improvement. Switched to Augmentin 5 days ago. Now leg pains are back with a vengeance (hadn't really noticed they had gotten so much better - guess they had), and we can't get her to brush her teeth. DD2 started Bactrim 5 days ago. Restrictive eat...
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Hi all, We have our first phone consult coming up with Dr. K. Can anyone let me know what to expect from that call? How best should I prepare. We have an hour tops and I want us to be prepared as possible. Thanks in advance -- Kelly
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wondered if anyone has a kid with Sydenham's chorea (SC) diagnosis?? my dd got her SC diagnosis confirmed by Dr. L last week. So its PANDAS along with subset of SC. We initially focused on the the Lyme before we got the PANDAS diagnosis. Not much effect on her symptoms ( cognitive decline and h...
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Hello. We have 6 children with lyme and co-infections. 3 have PANS. I am seeking advice for our 16 yo ds. We think his PANS symptoms began around age 3 1/2 yo (positive bull's eye rash at 2 1/2 yo w/only an 8 day course of antibiotics.) His prrimary symptoms until his teens were OCD and learnin...
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Hi there, I am a 27 yr. old female who was just diagnosed by Dr. T with late-onset PANS. I wanted to talk a little bit about my history, problems I am facing now, and some of my lab work. I started having problems at age 7 with extreme overactive bladder which is now diagnosed as "IC"....
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Hey, folks. First of all, I want to excuse my english. I'm a german fellow Maybe I will ramble a little bit but I hope that you will get the gist. I'm a 25 years old male from Germany who has suffered from OCD since I was approximately 3-4 years old. Basically my first memories evolve OCD...
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Has anyone who belongs to UHC gotten approval for IVIg for 2018? We have tried several codes all of which have been denied and appealed. If so, would love to know codes used.
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9 year old daughter is suspected to have PANS. About 2 years ago she lost her ability to write and do math and started having anxiety. We've since been on a path to determine why a healthy, A+ student all of a sudden develops a learning disability. We're in the testing phase where we are trying...
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To give little history, I've been diagnosed with schizoaffective disorder, which is simply explained as bipolar and schizophrenia together. I've also had tics all my life, mostly blinking, and some OCD. Whenever I take immune boosting supplements my general feel of psychosis and irritability in...
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Have you seen this article? https://home.liebertpub.com/news/revised-treatment-guidelines-released-for-pediatric-acute-onset-neuropsychiatric-syndrome-pans-pandas/2223
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Hi folks, My son has PANS with very high Cam-KII, but no anti-strep antibodies. It's now been over 7 months now since his symptom onset, and he's no better; a brilliant HS Junior unable to attend school. We've exhausted non-IVIG medical management, so we've been recommended high-dose IVIG+predn...
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has anyone been treated by Dr. J @ his clinic, going to start my DD on treatment. pls inbox me with comments..thanks much
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PANDASnetwork.org is requesting input from families on our experiences with PANS/PANDAS. The results will be anonymous and PANDASnetwork is going to present the results at the Common Threads conference next week. It's a quick multiple choice type questionnaire. If interested it needs to be filled o...
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My son E., has PANDAS and is almost 6 months status post IVIG treatment. We were advised by the treating Physician that E. should have a tonsillectomy and adenoidectomy at 3 months, but could not find a supportive ENT to do this. We are still looking. Has anyone had their children undergo these proc...
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Hi all, My four and a half year old daughter finished a two week prescription Augmentin on Friday night. The improvements we saw in her during that 2 weeks were incredible -- sleeping in own bed 11-12 hours a night (vs. night terrors, or waking up multiple times each night, needing us to...
