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  1. Yesterday
  2. It has been a long road, but I am in the "home stretch" of data collection for this study: I need only 10 more participants to reach the goal of 70 data sets. So, this is an appeal to any of you that have 23andMe data for your PANS or PANDAS child, to consider participating. Also, I am taking the opportunity to link to a good podcast on what has been called the "replication crisis". This genetic study I am doing is partly a replication of an initial result in a pilot study. Successful replication is very important because up until recently, half or more of all peer-review, published studies didn't replicate (which implies, they are wrong in their conclusions). Here is a link to a written transcript of the podcast: https://www.cbc.ca/radio/ideas/psychologists-confront-impossible-finding-triggering-a-revolution-in-the-field-1.5344467 and here is the actual podcast itself if anyone interested prefers listening: http://21393.mc.tritondigital.com/CBC_IDEAS_P/media-session/1cd5524d-881b-45af-b51a-0957b6046af8/ideas-vUWHypta-20191101.mp3 (right click and "save as" to download)
  3. Last week
  4. Has anybody had experience with Agape Multivitamins? Seems to have an excellent blend of methylated b's and others. Interested in personal feedback.
  5. Earlier
  6. @Ashly My DS’s strep titers were normal in Spring of 2016, but Rheumatologist said to try antibiotics anyway. 6 or 7 of his tics went away completely. The 7th went away with IVIG. She said that the abx may have an anti inflammatory property or although there was no recent strep exposure, the misdirected immune response (attacking the brain) never shut off from the last strep exposure.
  7. We did both. ASO as well as swab. Both were negative.
  8. Ashley, when you checked for strep was that titres or just a throat swab?
  9. https://childrenshealthdefense.org/news/americas-fifty-fold-increase-in-obsessive-compulsive-disorder/
  10. Okay. I decided to look up what I do and found this website. What I like to do is to take a word that sticks on my mind and I'll see if it's odd or even. I will mentally count each letter side by side _ _ and pile them up on top of each one to see if it's odd or even...for no reason at all. Most words of course you can just see they are even but I still find myself doing it. I'll tap with two fingers to "pile" each letter on top of them. What is this about?
  11. Hi, glad you are talking about Vax issues. I am just now watching interviews with Vaxxed2 filmmakers https://www.brighteon.com/6baad468-b7d4-4c2e-bc22-30db4ec55f53 I just don't use google whenever possible. That's all. Time has come for cabal overthrow.
  12. Hey! I am in NY as well and struggling with the mandatory vaccine issue! Unbelievable what our corrupt legislators can do. No way to get to school for many I know, including kids that would normally qualify for medical exemptions like seizure disorders and organ transplants!! Oh, and check out bill A99 in NYS senate mentioning detention centers for people with communicable diseases......(this has already PASSED in California....) Anybody in a different state OPPOSE these bills strongly in your state! They are insane. About Dr. Jennifer Daniels, would it really not come up on google?! I know about censorship but cant believe it! Seems we are living in some communistic country now ;(
  13. I would say the eye rolling is related. Yes you explaining mild symptoms of strep related problems. I would deal with this naturally after you finish the antibiotic, to make sure you got rid of all of it. I assume some people here can suggest good supplements, but I can think of Blis K12, Colloidal silver, thieves oil etc right on the top of my head. In my experience with my entire family, the unvaxed kids had much fewer strep episodes. Of course this could be contagious, but somehow I keep on hearing about strep and vaccines link; especially about a month after vaccination.
  14. Hi everyone, haven't posted since 2015 Well, as it turns out, I did end up with two Pans boys. I went into denial about the second one but it became evident the second one was showing behaviors that were not neurotypical. His flareup when he got sick included "spells" in which things got bigger and things got smaller and he was in terror. Not fun. Then there were hours of animal noises. Anyway... My older boy is 19 now and is coping by himself, thanks to his friendship with a healer. HIs tics are still bad alas. But he is high functioning and is somewhat of a starseed, so I appreciate that. He is on CBD, a little marijuana to reduce stress, and generally avoids doctors and harmaceuticals. That's my boy! He works as a nanny and is taking classes in early childhood development. Those who know my son's history know this has been quite a journey and I know all of you have had your share of journeys on this front! This boy also has a genetic disorder that is another strike against him. We knew this since birth but underplayed it and didn't even tell him for the longest time because he had enough strikes against him. He handled it well but despite living at home, he is going through an anti-family phase. He would like more friends and a girl friend. He is active in the anti=vax movement in NY which has imposed mandatory vaccinations for all. He plays drums. My younger son is 13, does not have a genetic condition, is adopted from another country, but it took a rather unorthodox treatment to have him come to me and say his rages were done. I am going through divorce so I have not seen him much lately as I don't live in the same city but he does seem calmer. I would like him to get CBD as well. If you would like to know about the unorthodox treatment, I have done it myself and removed a tumor from my kidney. DUCKDUCKGO Dr. Jennifer Daniels for more information. My son plays guitar and is a budding baseball star. His schoolwork is average because it's boring to him. I have just completed work on a hemp farm where we grew product that is being made into oils. Organic, pure. Please feel free to ask me questions about it. It is hard at an advancing age (I feel great though) to start a new life. Thanks to everyone for your continued support of our kids and us, the parents. Michael
  15. Dear all, I'm looking for a medical doctor (Not ND) who is able to prescribe IVIG in San Francisco area. Thank you in advance!
  16. In April 2018 my (then) 4 year old son had his very first tic episode - 2-3 days of mild blinking, which promptly went away for weeks or months. Then he had 2-3 days of coughing, which also went away for weeks or months. I brought him to his Pediatrician who told me that tics are very common in kids and he expects them to go away completely by the end of summer 2018. The tics continued on in the same pattern - either mild blinking or mild coughing for 2-3 days, then nothing, so I didn’t worry too much as I trusted our Pediatrician. Then on July 11, 2019, the tics started again and didn’t go away. They were more frequent and we found his behavior was different - he was getting angry over everything. He was just different. I called our Pediatrician and reminded him that this had been going on for almost 1.5 years and he casually said “oh, it’s probably Tourette’s, keep an eye out for ADHD or OCD as they’re very commonly associated”. Needless to say, my husband and I were absolutely devastated and spent the next week desperately reading and searching for ways to help our son. We did allergy tests, muscle sensitivity tests, functional neurology, biomagnetics, paleo diet, and tons of supplements. There was mild improvement but on a bad day his tics were every 10 seconds or so. Then I made the connection between his symptoms and pandas. While he has never had strep to my knowledge, I called our pharmacy and it turns out that my husband had strep in April 2018 - the EXACT time this all started. We went back to see his pediatrician and he reacted so rudely and aggressively and told us that it’s impossible for it to be pandas and he would have severe OCD. He refused to listen to the facts I had found online and stubbornly insisted he knew better than the pandas network. We then went to a Pediatric neurologist who agreed to do blood tests. Guess what it found - strep antibodies! He had his tonsils and adenoids removed on oct 8 for an unrelated problem but his ENT agreed to try antibiotics (this was actually a huge deal as I had asked several other doctors who refused to try antibiotics without a positive throat swab. We live in Canada and doctors here are very careful about antibiotics). So he has his surgery and starts the antibiotics (amoxicillin). 3 days later, his tics are pretty much completely gone. He had a rash on his hand that had been there for over a month and it disappeared. He now has maybe 5 tics a day at most. Our lives have completely changed because of this!! So clearly it was pandas and not Tourette’s. I haven’t dealt with our Pediatrician yet, but that will come in time. So now what happens? He only had 12 days of antibiotics - is that enough?? An infectious disease specialist said it’s 50/50 about whether or not it’ll come back. I’m staring at him all the time and it’s so stressful to live like this. He was supposed to have his dental cleaning before his surgery and I cancelled it. I’m honestly scared because of what I’ve read and how that triggered another episode for other kids. Also, my other son (8) started doing this weird eye roll thing around the same time this all happened. We took him to the eye doctor and he said it’s not vision-related and it seems like a habit. Could it be a mild case of pandas too? That’s his only symptom but that seems too unlikely to be a coincidence, right? I’m going to ask for a blood test requisition for him too when we go back to the neurologist. So I guess I’ve written this incredibly long, boring post in hopes of finding out what will happen in the future. It seems like my son’s case was much milder than most, and he’s never had an active strep infection to my knowledge. Does he have a better chance of full recovery? if you’ve gotten this far, thank you for reading and I look forward to any and all comments and advice!!
  17. We did do strep which was negative. He did contact pneumonia which was treated with antibiotics. The pneumonia was about 3.5 months before the acute onset although i feel he has had some my OCD tendencies earlier as well. Thanks so much for your advice, will reach out in case of more questions.
  18. When we first used this in 2015, I think we worked up to the 900mg 3x daily over 3 weeks. Try doing a Google search of the Yale clinical trial. We probably followed the dosing from that, as far as what to start at. My advice if you go the medication route, is that less is more. The first time we tried Prozac it was a disaster, but had some success years later on a very low dose. Most of the antipsychotics cause aggression if the dose is too high. Be sure to document behaviors and doses. Your son’s symptoms sound like PANDAS/PANS. Have you gotten strep and mycoplasma titers done?
  19. Thanks so much, we are almost thinking of trying medication. Have just started him with NAC. He has never used Miralax. His most distressing thing right now is that when he has to choose from what he wants to do and what he should do , he gets extremely angry and agitated and can't cope. For example he does not want to study but he knows he should because there is a test, he completely loses it. This can be for anything - his eyes were aching but he wanted to watch TV - that brought on the same rage. I am not even sure what is this - TS rage or oCD or something else. He is only 7. It's like he will be a different person and then snap out of it at some point. Anything I do or say in the interim does not make a difference. How much NAC you stares with and how did you increase, in what frequency?
  20. At the time we had the most success with NAC, DS had just been weaned completely from all meds due to side effects. He had been on prescription meds for 2 1/2 years, which helped OCD a bit, but not tics. The meds made him aggressive, negative, hateful, revengeful, etc. Although doctors told me it was coincidental and not from meds. He developed priapism from the meds, and finally we were told to wean him off everything. That is when he started the NAC. Within 3 weeks we had our happy, good-natured child back, after 2 1/2 years of misery. This lasted for 7 glorious months, until he experienced his most severe onset of PANS. Current MD linked this to Miralax use. If your DS has ever used Miralax, I will share the details.
  21. Thanks so much for sharing your experience. Did you give it along side medication or anything else ( other than magnesium?) We have started with a low dose - and will increase slowly.
  22. @Ashly We had huge success with NAC for my DS a few years ago. We used a high dose (900mg 3x a day). This was the dose from the Yale clinical trial. It may have taken 3 weeks before we saw improvement with OCD and tics. Current MD says it’s important to use magnesium along with NAC. DS 15 is currently getting HD IVIG, but recently asked if he could start the NAC again (which we resumed last week).
  23. @xh1688 My DS now 15 had very similar symptoms about 2-3 years ago. When his OCD was triggered, he would need to get completely undressed (even in public). This was the only thing that would cleanse his intrusive thought. He said that the compulsion was so strong, it didn’t compare to the embarrassment of being naked in public. He was triggered so often that he stayed naked at home 90% of the day. He also had tried to get out of a moving car when his OCD was triggered. Antibiotics had worked beautifully for a month, but MD wouldn’t prescribe that dose for any longer, and he regressed on lower dose. Ultimately a PANS specialist determined DS was experiencing encephalopathy which was triggered by Miralax. He has been receiving monthly HD IVIG for almost 2 years. His OCD is 80% gone.
  24. Dear all, My DS 16 has been on combined antibiotics for two years. His Lyme lab result always is negative (Only IgG P41 and IgG P39 “Present Abnormal”) but Bartonella is active. Since his condition seemed stable, I started to reduce the dose slowly for Rifampin and Azithromycin at beginning of July. A month later, he was completely out of antibiotics. His overall symptoms (rage, OCD, anxiety) seemed similar (not worse) than before stopping antibiotics. However, an odd behavior started a few days later when began to reduce dose of Rifampin. He took his shirt off and threw to the toilet.(the first day with this behavior also the first dose of 5 HTP due his difficulty to sleep. But he only took it for two days). When continued to the less dose of antibiotics and until was completely out, the disrobing became worse and worse and much more frequently. He gradually also took pants, underwear and shoes off. He did this at home only at beginning but later at school. Today, after he is stopping all antibiotics for two months, he even did this at a restroom in a park. He seemed desperately want to off from his clothes and lifted his arms to pretend flying. He even did this in my car. He also unfastened seat belt constantly and tried to open the door when I was driving on the freeway. At home, he insisted to take all clothes off although I asked him to put back on again and again. He took off in only one second when I turned to get something. He threw all clothes into water (toilet or sink) once he took off. He even threw CDs into the toilet and flushed. I’m really overwhelming and getting crazy because I have no ability to control this since he is taller and stronger than me… Even worse, he is unable to explain why he does this with limited language due his autism. Has anyone experienced similar situation after stopping antibiotics? I don’t think 5 HTP caused it although it happened on the first day, he took this supplement. He did 5 HTP when was younger (at age 12—13) without problems. Is it a reaction from brain after completely off from antibiotics? Any tips/advices will be greatly appreciated!
  25. Hi -- we are locking this thread so the conversation can be continued in the Comment area of a regular article. That way more people can see it and learn from it. I hope you will participate in sharing ideas there! Please see here. (https://latitudes.org/can-you-help-amelia-with-her-tics/) Thank you!
  26. Our admin, Sheila Rogers, has published an in depth article that is really worth reading! How sad that conventional medical views refuse to think beyond the same old approaches, despite the growing evidence (research & anecdotal) that there are other aspects to consider causally and for effective treatment. Bravo Sheila for calling out this ongoing "failure and farce"! Here is the link to Sheila's article "2019 Guidelines For Tourettes and Tics: A Failure and A Farce" : https://latitudes.org/2019-guidelines-for-tourettes-and-tics-a-failure-and-a-farce
  27. Hi there and welcome to the forums. Where do you live please? (State/country)
  28. Chemar- I have always used natural cleaning products, and personal care products. I want to do the testing to see if there are specific foods to him that I should try cutting out- I'm just not sure which test to use or who can do it for us
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