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  1. I'm learning about this after reading about a success story on one of my many Facebook PANDAS groups, and went searching for information. There are others that have been helped by it, although I'm still trying to understand it. My ND's office has a chiropractor who uses it for Lyme patients, but he is not that familiar with PANS. I know it reduces inflammation and increases blood flow and helps facilitate healing, but does it kill bacteria? I don't know whether or not to try it. Has anyone had any experience with this?
  2. I need this groups help on a topic I feel like autism and PANS may be one in the same ,,,, I have heard of other doctors thinking this too that classic PANS is an occurrence after age three, & my sons situation is before he was three with his tick bite when he was a baby.my son is now almost 4 & has a twin with typical chattery development..... We are doing oral human gamagobulin for 2 months and starting our 3rd month we now have good speech but very little desire to be social or use language in a back fourth receptive way, very little desire to socialize with his brother. We had
  3. Just got off the phone with one of my NDs and talking about immune modulation and how we can redirect the immune system into fighting bacteria and viruses instead of DS' brain. She said she uses larch arabinogalactan with a lot of kids - I've been doing a lot of reading and this is the first I've heard of it. Anyone else use it? She also recommended olive leaf extract. What is a good brand to use? And dosage?
  4. I've noticed this happening over the winter and it's happening now too. DS seems to flare after he is sick, but not during. For example, this past Monday he seemed to have some slight improvements which continued on through the week, but on Wednesday he developed a stuffy nose/cough in the evening. The worst of it was Thursday and Friday, but his tics were still improving. However, by Saturday he had gotten over the worst of it (and passed it to me and DH), but his tics really flared up that night. And Sunday, and until now. I find it curious and wonder what is happening with his immu
  5. So I noticed that DS' breath last night had a weird fermented smell. Kind of like he had a couple beers. I smelled him this morning and it is not so bad. Smelled his skin too but he smells normal ("mommy!! what are you doing?!?!") . I started thinking about yeast overgrowth; he's been on abx for 3 weeks and does take 50 billion units of probiotics. He's also on Sacc. B., which is a yeast, so I'm wondering if I should cut back on the Sacc.B for a bit. He takes his last abx around dinner, and his probiotics right before bed (as per the ND's advice). He hasn't had any tummy issues. Ha
  6. Ugh. Need to vent. DS' new tic these past three days is screaming at the top of his lungs. Makes driving with him a rather harrowing experience. I'm hoping this doesn't last long. I thought the loud whistling was bad but I'll take whistling any day over this.
  7. I just wanted to share this article. I am not promoting this lab and did not use this lab for testing. I have had a difficult time understanding why my son's symptoms are so different and yet these anti-neuroantibodies have shown up. The first time he had the Cunningham panel ran it could not be read as unlikly or likely. The marker was in the middle. My educated guess is that my son's body had accepted the antibodies as part of his body. The second time my son had this test was when he had a double ear infection. Both ears inner and outer, very painful, and his symptoms of tremors, vocal tic
  8. I have been looking at the Gluten Free diet. I would like to know what symptoms it seems to help. I would love to hear any, success stories. I read the one on Jessica on the other forum with Safe Plate Diet. If you did this diet, how long to it take to see any relief with symptoms. Symptoms such as headaches, scalp pain, vocal tics, tremors, fatigue and low energy levels. What were the benefits of going GF? My son has no food allergies and has been tested with tissue sensitive gluten test and it was negative. I'm just wondering if putting my son on this diet would be worth the trouble. Rachel
  9. My doctor wants us to try Oral IG. It is the IVIG used but not with needles, We are told to give him a childs does of Pepsid to stop stomach acid and the oral amount is small & given every other day for many months. It is expensive $600. a month and I am fully aware of that. Background: My son is 3.5yrs old, and is in & out of being with us.He has some OCD, it used to be EXTREME. He talks some but not conversationally. He did 20 days of Cefdinir 2 different times. On both occasions he did speak conversationally. And permanently lost some of his worst OCD & separation anxiety s
  10. I don’t post very much because when my twins are home from pre-school the minute I open the iPads they both grab one & jump on ABC Mouse. Background: my son is 3.5 years old he has had PDD-NOS since he was 18months maybe longer. He has a twin brother & they were initially both verbal at 16 months then one progressed verbally & social and the other had terrible diarrhea & stomach problems for many months & he then did not progress, he actually regressed for a year. I see a DAN that was in California but is now in Florida & my son is on Methyl B-12 injections, DMG, Dig
  11. Thought folks might enjoy this. http://www.mercurynews.com/health/ci_25600426/misdiagnosed-bipolar-one-girls-struggle-through-psych-wards
  12. Friends and Comrades-in-Arms -- Through another support forum, I've been contacted by a family in Italy (not certain where in Italy at this point, though I have asked the question so will clarify once I get an answer) with a young adult son (age 25). There's a bit of a language barrier, but the father does well with the help of some Google translator ap. This boy-man has official diagnoses as follows: immune-mediated encephalopathy post vacinale secondary diagnosis pans pandas syndrome. Unfortunately, however, it appears he's having trouble getting effective treatment. His father
  13. I'm new to Latitudes and this forum. The short story is my ds, 12, developed severe ocd, tics, and rage issues over a few days in October 2012. His brother has bipolar disorder, so his PCP assumed that my son did, too. I insisted he be tested for strep. While the culture was negative, his titers were extremely high. Another doctor in the practice thought he had Sydenham's Chorea, so he sent us to Children's Hospital in Boston. He was put on IV antibiotics and ALL of his symptoms disappeared within 24 hours. (Children's does not 'believe' in PANS or PANDAS) and discharged him with a diag
  14. I have read through some old post and see comments that this is helping. How is Fish oil helping your son or daughter? What dosage is being used. Feel free to pm. My son takes fish oil but not at a high dosage. I tried increasing olive oil levels this last week in his diet and his pain levels and sensitivity levels went way up. So I have backed off. I have found some articles that indicate Fish oil is good for many things and will share what I find. Is there any research on how fish oil affects PANDAS/PANS. I am assuming it affects the brain antibodies, Maybe? I feel like I missed some good
  15. I'm just about ready to take the plunge and go gluten free with my son. Last Saturday, when the doctor was going over results, he asked if we ate out much. This is a very rare thing for us to do. He said that MSG could cause high Glutamate and low GABA that showed up in the neurotransmitter test. I've been researching and it seems like there is a connection with MSG and gluten products. Is this right? I'm also beginning to understand that it also occures naturally in our foods such as vegetables and fruits. I'm about ready to plant my own garden. Is it possible to was this stuff off your frui
  16. My ds was seen by a doctor in Texas last December. Finally got test results back and have a phone conference set up with the doctor this Saturday. The test results showed that my ds M pneumioiae IgG Abs was 953. Normal Range is 0-99. The funny thing is this same test has be done twice ( results were in range) after the titer showed up high 3 years ago. Does Mycoplasma only show it's head when there is an active infection in the body? I know this thing is hard to detect but I am in shock I guess. From reading I know it can move in and out of cells freely. If this has been in my ds body this lo
  17. Have any of you been fortunate to find a Specialist that will communicate with you by email or a nurse line. The specialist I took my son to last December will do 30 minutes phone conferences for $175. I tried to ask a simple questions about a reaction to a medication and the staff said that I would need to set up a conference call. Is this how most specialist in the area of PANS/PANDAS and Lyme treat patients. I have insurance and they will not pay on conference calls like this. I have a cardiologist that works with us weekly by email and calls my house at least once a month. This doctor
  18. Hi - my 12-year old daughter has PANS, I believe. Seeing PANS/PANDAS neurologist in northern NJ. Very elevated titers for myco (1400) and slightly for strep. Treating with Amoxicillin AND Zithromax. Has tics which may have actually increased since being on antibiotics (only about 9 days though). She will not take pills, tried Biaxin liquid but will not tolerate so switched to Zithro. Also has increased anxiety and has had one rage since on meds. Used to take Omega3 (Nordic Naturals with DHA for kids) , then stopped, and recently started again. Taking probiotic too. Her diet is GF and mo
  19. We started a couple threads previously. Our daughter had an acute onset November 9, 2013. Symptoms were minor for several days and peaked on November 14, 2013. The acute onset included involuntary motor movements and hopping/skipping between steps (complex motor tics). So many more symptoms became present through Novemeber 14. Our pediatrician made the referral to neurology. The neurologist stated that PANDAS and PANS is theory so we started hunting for doctors and new insurance. Since I work with kids with psychiatric disorder and the symptoms appear to be more psychiatric in natur
  20. A simple Google search of ‘OCD 7 year old’ brought me to your group. I’ve never heard of PANDAS and I have to say that what I have read scares me. I feel for each of you and your children who are suffering. Here is my son’s story…my apologies it is so long. I’ve tried to document medically what might be relevant. On October 8th, 2013 my 7 ½ year old son received the flu mist at his annual check-up. Within 5 days or so, he suddenly started counting to 7. He seemed to count repeatedly for no reason. He counted while watching a movie on the iPad – changed the volume setting 7 times whi
  21. Our daughter was put into a study at the National Institute of Health earlier this month. We received a call with an immediate opening; so we are here now. She has tested negative for strep 4 times now. What other infections have you found, heard of, or treated in your child that that developed OCD/tics that, once treated, caused a remission of symptoms? The NIH has indicated we can have additional testing done. These are the current tests: EEG: awake and at night Sleep study EKG & ECHO Brain MRI Lumbar puncture; Only if we have abnormal sleep findings throat swab, urine tes
  22. My ds 15 had a bad bout with Flu B last week --- very high fever, body aches, etc. Took Tamiflu, and is now left with a chesty cough. Oddly enough, his Pandas symptoms were not bad during the flu week...tics decreased, OCD, anxiety, and ADHD symptoms were all surprisingly decreased. Two days ago, however, the Pandas symptoms came back with a vengeance. Tics, OCD, anxiety, hyperactivity are worse than they've been in a long time. He also has a red, dotted rash on his face (we think this rash--which we've seen on his trunk before-- is yeast related). AND, he is finding it hard to make eye c
  23. Our doctor changed our son's (DS 15) antibiotic from Rifampin/Bactrim/Omnicef to Minocycline/Omnicef two days ago. His tics, anxiety and OCD have gotten even worse ever since. Wondering if this is from the change in antibiotics and if so, will it stabilize? Thank you for any guidance.
  24. hi all, I am new to the group, my son is 13, original autism diagnosis,then lyme and coinfections then PANS/encephalitis. This past 6 months have been for him and our family and nothing that has previously pulled him out of a flair is working. I am desperately trying to get him IVIG and find the right protocol. Have apt at Stanford in a few days, wondering if anyone can recommend a good doc in California or have experience with getting ivig with Stanford immunology dept? thank you deborah
  25. My cockpit has been hijacked. Over the past few weeks we had noticed that some of my son's behavior had been unusual for him. While perplexing, we coped, help him cope, and chalked it up to adolescence, increased academic demands at school, his maturity and an increased desire to be accountable, successful, blah blah blah. When I returned from my daughter's 3 day field trip just 11 days ago I was greeted with mayhem. Sudden, acute, confusing, helpless mayhem. We limped through the weekend, and then took our son to his pediatrician first thing Monday morning, and spent half the day at
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