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  1. I know a number of folks with TS also struggle with OCD intrusive thought patterns, so am sharing this helpful video here as well:
  2. 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.
  3. A really well done and helpful video on dealing with those Thoughts !
  4. 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, headache etc)for a week, but she was negative for strep. Our other daughter was sick in hospital(hindsight possible pandas/pain processing disorder) and I didn't do a good job of paying attention to other daughter. She spent a lot of time in her room and we noticed her doing things but we thought it wa
  5. 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 mentioned PANDAS/PANS in all that time. For 14 years Jonah was a loving life kid, swimming, playing, beach lover until something took all this from him! (Jonah has been non-verbal since the ages of 3 and is now 17, lives near Palm Desert, CA) I recently purchased the book "Your Child Has Ch
  6. 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 basis? I ask b/c PANDAS treatment can actually conflict with Myalgic encephalomyelitis (M.E.) treatment. I.E. I know several M.E./CFS patients that were put on steroids and have been bedridden ever since (not good to suppress our immune systems as we have tons and tons of chronic infections and a very
  7. Hi everyone, I am almost 25 and just got diagnosed with PANDAS a couple months ago. When I was six, I had Sydenham’s chorea and was put on prophylactic penicillin, which I continued taking until age 22. For the past few years I have been having increasingly bad symptoms and finally just found out that I have also had PANDAS the entire time. I also scored very high on the Cunningham Panel. Unfortunately, IV steroids made me worse, and the treatment recommended to me is rituximab, which I do not want to do. I feel like I need to figure out the root cause of why I am having an autoimmune problem.
  8. lulu648

    Touretic OCD

    Has anyone out there heard of Tourettic OCD? I just heard the term today for the first time. Any info appreciated! Thanks!
  9. 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". At age 15 sudden sharp burning pain in shins which I still have. At 18 developed anorexia nervosa, along with it came chronic tiredness and bad insomnia. I was just diagnosed with depression and treated with MANY medications and eventually ECT, none of which were helpful. I got somewhat better with
  10. 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. Sounds not untypical doesn't it? The reason I'm worried and want your opinion on my case is the very early onset of the OCD. I have read that OCD CAN start very early. But looking back, I wonder if OCD alone can really be that aggressive and start that early on. Furthermore, I'm aware that I had a
  11. 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 increases, and so does my tics. Any idea as to why? And I'm open to any recommendations on how fixing it. That's it for my question. Below are some indications for those that have the ability to do detective works. Olive leaf extract: gives me energy and temporarily cures tics. Often cause
  12. 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 oral antibiotics aren't doing anything for her. She responded excellently to ceftriaxone in the past, so I am in desperate search for an LLMD willing to give it to her again. We have been seeing an LLMD for a few months now, but I found him to be dismissive and not willing to hear anything out. My dau
  13. Hello all. My daughter is 17 and has been on every pysch med imaginable, CBT/ERP, you name it...I've discovered over the past few years her OCD is caused from infection in her brain and right now I am searching for a pyschiatrists or MD.. any DR really, who will be willing to consider using ceftriaxone to help treat her. She is miserable right now and OCD is preventing her from getting her physical conditions treated properly. Studies on OCD and ceftriaxone are remarkable and every time she has had some she has had significant symptom relief, only issue is finding a doctor who will listen. Any
  14. 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 her (slight sensory issues since birth) or she will just sort of be off. Like she's npt 100% there and then a couple days later she's just back to her normal self. We are day 10 of chicken pox and she is off (as I have posted elsewhere). We took her for a strep test. Negative. My pediatrician w
  15. Hi everyone, My four and a half year old had a very bad virus about 5 weeks ago. Started with frequent vomiting, lethargy for 5 days, followed by diarrhea for a few days. She was in the ER to get IV fluids and IV Zofran. In the last few weeks, what started out as odd behavior/tics with tiny episodes of aggression have very quickly turned into severe fits of rage and other serious symptoms. Below is a sampling. As I wait for a return call from a PANs/PANDAs dr, thought I would ask this group your thoughts. Thank you in advance for any of your insights. Peculiar behavior
  16. My son (11 w/sever autism) has been treated for PANs for two years with antibiotics by an immunologist at MGH. Recently his symptoms worsened with increased anxiety, ocd, aggression, and a new tic disorder. Can anyone recommend doctors in New England who could treat a child like my son? We're feeling quite desperate. Thanks!
  17. Anyone with a PANDAS teen with Severe OCD? My son has been suffering with PANDAS for 5 years, he's 18 (suddenly sick at 13 with a strep infection) and now living in a residential school. I thought we were finally on the right track..he started speaking a little more, and finally is taking his antibiotics but recently he started to decline more (he's already very disabled). Now he won't leave his room, has stopped eating and can't sleep. Stands all day. I feel that he needs to be physically moved from the room..just to help him get past this point but staff are hesitant. Not sure what other opt
  18. Hello everyone, my name is Arindam i have been suffering from OCD for last 8 years and always tried to find out what exactly causes the disorder and up untill now never really looked into the topic of PANDAS and how it could trigger the onset of OCD . But from what i have read i understand that PANDAS usually happens if children (ages upto 14) gets infected with group 'a' strep bacteria causing strep throats or scarlet fever which confuses their own autoimmune system to mistakenly treat a part of their brain (basal gangila) as foreign body and attacking it instead of the infection or along wi
  19. Hi, new to the forum but have been observing for a few months. I'm in desperate need of any answers possible. My DD first started having severe OCD symptoms at the age of 7 (she's 17 now). I had no idea what caused it or what PANDAS was. Through the years she has been on every SSRI imaginable (which had very little - if any - effect on her OCD symptoms and gave her suicidal thoughts) , been through ERP and CBT, hospitalized, you name it... In late 2015, an immunologist ran several tests and diagnosed her with PANDAS. Along with the OCD and being prone to strep, she also has insomnia and sinus/
  20. Hello. I recently took my 11-year-old son to the pediatrician for OCD symptoms. The doctor put him on 25mg of Zoloft and three days later he is experiencing severe abdominal tics. Has anyone else experienced this? Wondering if it is caused by the Zoloft or is secondary to the OCD. I tried calling the Dr 3 times yesterday and my calls were never returned. I will be changing pediatricians after this experience, but I have no idea whether to leave him on the meds or not. We've never dealt with tics before....
  21. Hi Please help my son. I am desperate! My son used to have mild to moderate OCD and controlled with Zoloft 200mg. His OCD basically did not affect his daily function. April of Last year, he had to take antibiotics for other purpose, but his OCD increased a lot. After the treatment course, his OCD relieved a little bit. In this year April, his OCD increased significantly without a clue. Blood tests showed high level of Strep A antibodies. Then we visited Dr. T for checking for PANDAS/PANS. He first gave him Augmentin and Ibuprofen, but OCD increased instead. At the same time, he order
  22. Dear All, I'm desperate for some guidance on my situation. I feel utterly lost and feel that I'm beginning to dwindle away as a solitary eccentric. However, I may finally have an answer nearly 4000 miles away. To give you some background: I am, or was, a 24 year old mathematics student from the UK, with a working diagnosis of ASD, OCD and ADHD. I have a very much up and down history of academic attainment ranging from A's to U's during troubling periods. Anyhow, this cycle has been most pronounced for the last 6-7 years but may originate in childhood. It all began in November o
  23. I'm 20 years old and I've had OCD accompanied by tics since I was a little kid. The OCD symptoms have subsided over the years and now almost entirely consist of tics. The main two tics are jaw popping and blinking. The jaw popping can be really bad to the point where I either clench my teeth, bite my cheeks, or simply don't open my mouth for fear of popping my jaws. The blinking is almost constant and is mainly in one eye, but either ways it makes it hard to drive and I've recently noticed my vision becoming blurry which I can only imagine is from the constant blinking. The two tics alternate
  24. My daughter just turned 3 earlier this week, and last night some behaviors that we'd noticed that we thought she would just grow out of got a lot more concerning and worse. She's always been particular about being clean and her hands being clean, though I didn't think too much of it. Lately when she gets upset, particularly when she wakes up at night, she has started to spit on her hands, which gets her even more upset, but she keeps doing it. Used to be we'd hand her a washcloth, she'd towel her hands and would be fine, but last night a washcloth was not enough and we had to take her to the s
  25. Hi all, I have approval from Dr T to try minocycline, but was then told by his staff I'd have to visit him in person before they'd call the rx in. So, in the meantime I'm wondering if anyone knows anything about ordering minocycline online? I found many sites, and from the one below it seems to be the same rx, but for animals. The price is good - but I'm wondering if anyone has done this before? Am I crazy for considering this? Here's the site I'm looking at: http://www.allivet.com Also, here's a patent that was submitted for treating anxiety/ocd with minocycline - interesting! Has anyon
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