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  1. Found a good resources on Autoimmune Encephalities. It even mentions PANDAS. Thought it might be worth sharing. http://www.ssi.dk/~/media/Indhold/DK%20-%20dansk/Diagnostik/DiagnostiskHaandbog/Autoimmune%20encephalitis%2034.ashx
  2. Hi, Just had appt. with new doc and one thing they gave me was Deplin (15 mg.) for my DS (23) to try...supposed to split the pill in 2. I've been reading however that your supposed to also take B12 and B6 yet the doc didn't mention either of those two. Should I call and inquire before giving this? thanks
  3. Hi, Was just given this to try....Haven't found too much info on it, has anyone had any experience with this? thanks
  4. 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
  5. Hi all, I thinking of taking my DS (23) off all abx to treat yeast...He's been laughing for years and i think its yeast. I've tried periodically to treat with difflucan among other things and yet still laughing uncontrollably. Gave him a 30 day course but didn't seem to do much. Of course while trying to treat yeast he's still been on abx so maybe you can't treat both at the same time. I have him on Candicid Forte at the moment, anyone have any experience with this? If I take him off abx will he regress so bad its not worth it? How long to treat?...could take months then of co
  6. A little background ds 9. After ivig (12 weeks ago) was making great progress. Happily Returned to school after 6 months hospital homeschool. He loves it and quickly developed friends and did all his work and homework. Developed acute vasulitis and was put on long dose of prednisone. Within a week almost all pandas symptoms gone. Started saying he felt like a normal kid and he remembered what feeling happy was like. After 35 days of 10mg 2xdaily we are slowly tampering him down. He is now flaring and it gets worse everyday. We had a meeting at school and will probably have to pull him out be
  7. Any neurologists or knowledgeable doctors in the south, who will have an understanding of not only pandas / pans BUT neuroinflammation + autoimmunity in correlation with neuropsychiatric symptoms?? I'm looking for someone who will prescribe and understands ivig and pex (already done abx and antiviral). Any of the major cities like Atlanta would be great. I am searching the web and coming up empty handed besides Dr. N and a Dr. Brian Fallon in NY who's main focus is lyme. I've found some researchers, but can't seem to find treating physicians. Would prefer not to travel a far
  8. The research below, done in Australia shows the dangers of our food supply and why there is an epidemic of diseases with the onset of GMO food both in our meat supply and corn, soy and sugar beets. My mom always wondered why I, and so many of my friends had to have bed rest pregnancies. She use to be a labor and delivery nurse in the 50's and saw miscarriages but mostly early on. Glyphosates were introduced in the 70's and tripled or more in amounts sprayed with GMO foods. Now I have my answer. I met the farmer personally 2 years ago at a lecture. He is 3rd generation and has seen ch
  9. Hi, My DS (23) lately has been very touchy..meaning touching/playing with EVERYTHING...sees the garlic on the counter and starts peeling it...takes the salt shaker or pepper and puts it in whatever is around like iced tea...just basically playing with everything, can't seem to sit still. If we go somewhere he will pick up whatever is around and play with it. Is this considered ticcing? OCD?....If so then I guess he does have pandas as well as lyme. thanks for any thoughts his mom
  10. The PANDAS/PANS Symposium was a brain intense, but wonderful gathering of Dr.s and parents put on by PANDAS Network in San Francisco, Saturday April 26. Families came from England, Scotland, Canada and Mexico. Maybe others I have missed. I was never the "note taker" so I apologize for any inaccurate info ahead of time. I found all the Drs passionate about helping our kids which is a nice change from the blank look or grimace I have received in the past. I have bits and pieces I took away and will mention them here in case there is a dot for your child's picture of this puzzle. Any ot
  11. Researching around I found this very informative. Seems to me we have rendered the innate immune system dysfunctional. What should become dormant is creating havoc neurologically. Depending on the age of onset, infants-Autism, young children- PANDAS/PANS, elderly-Alzheimers. Looks like it's ALL the same thing! http://www.psychologytoday.com/blog/evolutionary-psychiatry/201110/could-alzheimers-dementia-be-caused-virus
  12. 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
  13. My daughter is 4 years old, and all of a sudden she started saying she was still 'wet' after urinating. She would wipe over, and over, and over. At other times, she would think she had to go pee again and again, even though she had just fully relieved herself. She comes home from pre-school in changed underwear and pants because she thinks she wet herself during the day, but we don't think she actually did. She was potty trained with no problems at the age of 2. This is the first time she's had any problems like this. 2 months ago, she complained all the time about an upset stomach
  14. I am going to the conference this weekend at the San Francisco airport. Anyone going?
  15. Hi this is my first post here, long time lurker. My DS has had a massive increase in OCD, Tics (especially shouting out and compulsive apologizing). His brother had a sore throat fever and when we tested at the ped he was positive for strep. My DS is under Dr Latimer's care but we are not sure how to counter the effects of strep in the house. This is the worst flare I've seen since he was diagnosed 2 years ago! Really need some help if anyone has insight! Thanks!
  16. This is one of the best articles I have read summing up the medical issues wreaking havoc on our children neurologically. It also goes hand in hand with the articles posted here in regards to missing gut biomes found in Autism, (ASU article) and the good strep bacteria in the throat, (NIH article) in the prevention of strep for PANDAS families. The author also talks about Gluten and Dairy as inflammatory contributors but not necessarily from an allergic response. The article gives me so much hope that we are finding answers. http://articles.mercola.com/sites/artic
  17. 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
  18. 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
  19. My son burst out with hives on Saturday and they are almost all over his body today: arms, back, behind, chest and legs. He's had hives a couple of times before (pre-PANDAS) for no real reason I could ever discern. We gave him a Zyrtec pill this morning and an Advil. Didn't seem to do much, as they are actually worse tonight. On Saturday, he went to a birthday party where they had junky candy.. At first I thought that was the cause--and it might well be--but now I'm not so sure. He doesn't have food allergies that I know of, but I've never tested him. Normally we don't do food coloring, e
  20. Hi, Thinking of going to see Dr. S in Wilton CT. She works with Dr. O. She sees adults, my DS is 23 and I think might have some PANDAS going on in addition to lyme/babeisa. Already have a lyme doc and looking for someone for "everything else": meth issues / supplements to take, etc. I have read a lot about Dr. O but can't find anything on Dr. S. Has anyone here any experience with her? The appt. is very expensive and I want to make sure its worth it. thank you frikfrak
  21. Ill try to be brief.... DD8 referred by regular MD to CAMHS at age 7.5 for anxiety and other behaviours- fears, auditory hallucination About 3 times in 3 years), separation anxiety - mild. emotional lability {sp?} Most of the time seemed sad- worries of the = world. Behav = need to be bearhugged, skin itchiness ( no excema), hanging upside down off the sofa / bed. climbing the kitchen cupboards looking for treats- a need to be ' up' high - hence the climbing. fear of someone outside at night, fear of the house alarm being set off by younger siblings wandering to toilet in middle of nig
  22. So after reading llm's post about the antibiotic that can remove excess glutamate, I am even more confused about the whole glutamate/GABA thing. I had been thinking about GABA supplements for DS because GABA is calming and his PANDAS symptoms are fairly large/prolonged motor tics and vocal tics. But now I have read that GABA and glutamate and glutamine all get converted to one another, so giving a GABA supplement wouldn't do much if it just gets converted into glutamate anyway?? Is it better to try l-theanine instead? I have read that it gets converted into calming substances such as GA
  23. I went to a support group for woman with children that have health issues. They discussed that Round-UP and GMO's not only chelate magnesium creating deficiencies but also zinc and believe that zinc supports strong sperm and there may be a link to lower zinc and difficulty conceiving. Isn't low zinc implicated in Anorexia and OCD? What are your thoughts? Our Dr doesn't supplement. I understand he has seen benefits and harm just like some here have both positive and negative reactions. I am sure it needs to be based on your 23 and me but thought I would ask.
  24. Searching through the archives of the forum, it seems that many, many of you have reported that Vitamin D causes issues/backsliding for your kids. Tell me about your experiences: Did anyone stick with it and eventually see a good result? Did ramping up the dosage slowly help? Did anyone have a good experience from the get-go? Was there a combination of vitamins that worked to mellow the crazy? Did you find another way to get your child's levels up? Backstory: My kid came down with PANDAS in October of 2013 and is mostly recovering. (I wrote about his story a bit here.) We recently added V
  25. Hi I have a 7 year old. Last year in November, he developed some vocal tics. These eventually evolved into coprolalia. He was put on guanfacine, zolofot and risperdal. That improved things and the only thing that remained were some grimaces. In an attempt to eliminate his tics and move away from these powerful drugs, we've tried a whole bunch of alternative treatements and dietary changes. - put him on a gluten free, dairy free, reduced sugar diet. - We have him on a bunch of supplements - Ca, Magnesium, Methionine,etc. - for a while, he was on a very strict, candida free diet a
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