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  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. I am going to the conference this weekend at the San Francisco airport. Anyone going?
  8. 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
  9. 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!
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. My 11 y/o son is homozygous for COMT V158M and H62H, MAO-A and MTRR. He is heterozygous for MTHFR C677T, A1298C, AHCY-01, 19 and CBS C699T/A360A. He is having tons of problems with depression, mood, anxiety, etc. He refused to go to school 4 days last week. He also has Lyme and Pandas. We are working with a functional medicine dr and put him on Prozac last week but now I'm reading that an SSRI with his COMT mutations may not be the right way to go….that maybe an SNRI is a better option. After 3 days on the Prozac he seems more irritable than before. Can anyone help?
  16. 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
  17. 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.
  18. 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
  19. This is a repost from Sheila Rogers under the Autism Forum. I think the info discussed is vital to those with PANDAS too. http://latitudes.org/forums/index.php?showtopic=20967&p=161966
  20. Hi everyone. I was wondering if there was a list of supplements or naturopathic treatments that people have used, whether with success or without. I've seen many discussions and signature lines with all the stuff people use and it's hard to keep track of them all. A comprehensive listing would be helpful. For example, what is NAC and how it is helpful? (I'm going to Google that now). I just put my DS9 (at 60lbs) on magnesium glycinate supplements (120mg), omega 3's (672 mg EPA to 168 mg DHA) and he's on probiotics. That's about it. Also thinking about going gluten free. Thanks f
  21. 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
  22. I would love to hear your recovery stories. Did your child ever go back to being his/her "old self?" How long did it take? Was your child in a state of semi-recovery for a while? What do you think was the most helpful thing for you? ----------- Here's a little bit of DS10's story: He came down with strep in October and burst out in a bunch of typical PANDAS symptoms (general anxiety, separation anxiety, hallucinations, irrational fears, emotional lability, rages) right as we were ending the antibiotics. A second round of antibiotics (10 days) took care of most of the really weird stuff
  23. Hi I am new to this site but have been reading some of the interesting posts I have a son that is 3 that is on Cefdinir for suspected PANDAS He was on a 10 day round of Fluconizole followed by Nystatin He has no sugar in his diet, No Gluten, No Casien and very little carbohydrates,,, basically the specific Carbohydrate diet How long would it take for us to know if this is the path for us, How long would it take to see changes with Cefdinir, Day? Weeks? Does anyone on here remember the time frame it took to see that the antibiotic was working? We are working with a DAN? Immunology Dr. th
  24. DS10 has now been officially diagnosed with PANDAS/PANS. I posted a bit of his backstory here. He is generally doing well and recovering, but I sense that he is about to have a flare. (I hope I'm wrong, of course.) What do you do beyond ABX when you sense a flare coming on? I just gave him some ibuprofen, and I give him Omega-3s and Vitamin C daily....but is there anything else I can do? Already planning on loving on him as much as possible and hoping it passes quickly.
  25. I am wondering if IVIG/Plasma exchange has been an affective treatment for a child with an onset of PANS/PANDAS that was not diagnosed within a year of onset. My ds son has had many symptoms developed since his illness . His illness started in 2010 and these PANDAS antibodies were found highly elvated in October 2013. Symptoms that have started with the illness include the following: headache, scalp pain, loss of muscle control, could not sit without help for several months, rolling back and forth, tremors in arms and legs, low blood pressure, high heart rate,long term memory problems, hoarse
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