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Showing results for tags 'pandas'.
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My daughter (Meghan) is 16 years old. She recently, (August of 2018) started experiencing what she called "spells". These are best described as dissociation. She says she's confused, doesn't really know what's going on and in a dreamlike state. These used to last for 10-15 minutes. Now it's bec...
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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. -
Hi all, when my panda is not flaring, her main issues are inattention, inability to focus. We recently started Intunive, lowest dose possible. Might be seeing subtle improvements but too early to tell. She's been deemed to be highly intelligent for her age. So, I want to explore other meds/options t...
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**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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Hi everyone I have been reading the posts here for almost a year now, which has been so helpful in many different ways. I finally found the courage to post and share our story. I will really appreciate the input of those who have had similar experiences. I have a 5-year-old daughter who d...
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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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Hello, I'm looking to hear from some patients of Dr. N. I already talked with one user (thanks) but my mom wants me to talk to some more people. My psychiatrist is referring me but not sure if I'll be accepted or not. I wanted to know if his treatment is individualized per case by case bas...
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My son has PANDAS and Aspergers. He’ll be turning 21 at the end of Nov and no longer eligible to continue seeing his Dev Ped or the Bio Med Dr who treats his PANDAS. He was treated for Lyme Bart last year and is also MTHFR pos. I’m desperately seeking a new physician for him that “gets it”, in the N... -
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, New to this forum and desperately trying to find a PANDAS specialist in Southern California for our 13.5 yr old son with PANDAS. We really need someone who understands treatment and can be very proactive. Our pediatrician was not well versed in treatment at all (and sadly Cedar Sinai can...
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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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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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Hello, all. I posted in this form about eight or so months ago searching for answers on how to treat my daughter's pandas. Since then, after a very long and hard journey, we have found out she has Neurolyme and multiple coinfections. It seems she regressing neurologically on a daily basis and the or...
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our DD has been prescribed as part of her protocol either Trileptal or Lamictal - does anyone have experience good or bad? she has been diagnosed with Lyme . Our concerns are the side effects of those two. They are supposed to help with her nuero-irratabliity, nerve pain and extreme sound sen...
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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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For those of you who have tried LDI for strep - what has been your post LDI experience - does your child still get strep infections? if yes, how do they react to these infections - do they get regular strep symptoms (minus flare)? Do you see their immune system fighting these infections? My worry is...
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Trying to connect some dots . . . would greatly appreciate your response. 1. Does your PAN/PANDAS child have hazel eyes? 2. Are they vegetarian (not culturally)? 3. Was their mother vegetarian during their pregnancy?
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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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Hello - have you all heard of and considered Low Dose Immunotherapy (LDI) for your children. There is a very nice YouTube video of Dr Ty explaining the use of LDI for lyme/pandas. He is a very convincing speaker and we are going to talk to him. Wanted to know if you have any feedback for us.
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Has anyone ever seen a sibling of their PANDAS/PANS child seem like they were starting to exhibit symptoms and then they resolved themselves? My daughter every now and then I swear I see something, and then a few days it's gone. I mean it disappears without any intervention. Her clothes will bother...
