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  1. 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
  2. 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
  3. 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
  4. 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.
  5. 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
  6. Hi, Need some advice....freaking out abit. Had appt. yesterday with neurologist at NYU....told him everything about my DS 23. Been treating lyme for 4 years and babesia for the last 2 as well. All other coinfections negative. Basically my son is mentally disabled, doesn't speak except for 1 word answers but the answers don't coincide with the questions. Very confused, just sits in chair. He has taken MANY abx and herbals, nothings worked. Always declined. Current test come back negative from igenix for babesia and bartonella. Negative lyme (all bands non reactive) thru Quest.
  7. 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
  8. 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
  9. Can someone help me to understand my sons blood work? Had to pull teeth to get his PC doc to write the scripts n when I called in for the results they tell me he don't want to give my son any antibiotics because he's not feeling sick ! Confused! Thank you all so much! Janny Anti-DNase B strep antibodies -result 1780, flag high Streptozyme- result 1:200, flag high Antistreptolysin o ab - result 784.9, flag high Lyme igG/IgM Ab- result <0.91 negative
  10. Hi Everyone I am a parent of a 13 year old son that has recently got back results on the Cunningham Panel. His antibodies came back highly likely for PANDAS. Recently, my son was seen by an immunologist in Texas that specializes in Autism and PANDAS. My son has not offically been diagnosied with PANDAS because his illness is progressive. My son had vocal tic start after a sore throat (back in August 2010) but rapid step test came back negative. Six months later, my son had Mycoplasma pneuomia and the mycoplasma titer showed up out of range in blood work 2 months later. Since this illne
  11. 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
  12. I apologize ahead of time for the long post. I have been a long time reader/researcher on this great forum, but this is my first post.It's so hard to be both the 3-ring circus leader and Sherlock Holmes at the same time, and I am feeling lost and worried- so I could use some of your guidance. I will try to give you brief history up to this point. I had a very long road to discovery of PANDAS/PANS with DS8. Though he was a healthy and happy baby, at around 18mos he would have repetitive strep- he also seemed to speak less or lose speech. The big culminating episode that is forever etched
  13. 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
  14. 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
  15. In the middle of October, my son had a strep throat infection and some odd mild PANDAs-like behaviors in the wake of it. (See previous question.) We did a second round of antibiotics and the odd behaviors resolved but my son still seems more irritable//forgetful than before. He's been getting in more trouble at school as well. But you know, he's in fifth grade. It's a tough time. I ended up having his titers run and just got the results: ASO 200 (On this test, 200 is the upper limit of normal.) DNAse-B – 800. (The upper limit of normal on this test is 310.) Are those results abnormal
  16. Wondering if anyone can add any insight to this. My Daughter has ALL but one symptom of pandas. She had a pos strep test 3 weeks ago, and elevated titers. Symptoms started in September. OCD, Sensory problems, Seperation Anxiety, Extreme agitation, Repeating words and phrases, bed wetting, regressive behaviour. The thing is, she saves all her worst for me. I get the brunt of her aggression, and the teacher at school says she is quiet and a little sad. My supportive family doesn't see the worst in her either when they watch her to give us a break. I have always thought that if a problem is at
  17. I'm having a difficult finding the answer to one of my questions regarding PANDAS. Our pediatrician has not been willing to diagnose our 9-year-old son with PANDAS, however, she agrees that all of the symptoms which abruptly began after a bout with strep seem to point in the direction of PANDAS. After testing his titers, one test came back high, so the doctor decided to treat my son with a course of antibiotics, during which our "missing boy" seemed to re-emerge -- no more OCD behaviors, sensory issues or extreme agitation. My question is this: After the round of antibiotics, my son's PANDAS
  18. Hi, We just got our results back from Igenix, 1st igenix test we took. Came back negative for babesia, bartonella, Ehrlichiosis and Anaplasma. Doc forgot to check the box to check for lyme so ordering that now. My DS 23 was positive when this all started back in 2009 for lyme and RMSF through Quest, all bands positive. Then is 2012 tested positive for babesia, again thru Quest. We've been treating for both since, Always negative for bartonella and other co-infections. So does this mean he now longer has any of this? We've actually gotten rid of it? If so then why is he no bette
  19. 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
  20. 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.
  21. Just got this today! I follow this PHD Paul Patterson after I heard him speak at the PANDAS conference in Irvine. Notice the wording of maternal immune activation. I would love a mouse study on pregnant mice fed GMO since there are pesticide DNA in every cell. I think he is doing some amazing work! http://infectiousbehavior.wordpress.com/tag/gi-symptoms-and-autism/
  22. This is the most IMPORTANT INFO I have learned in the last 7 years! MIT PhD Stephanie Seneff talks about the pathways that works with our genes creating Autism, learning disabilities, Alzheimer's, autoimmune disorders, cancer, diabetes, heart disease, obesity and our epidemic of vitamin D deficiency. Only available today. Make time to listen.... For yourself and those you love. Peggy http://gmosummit.org/broadcasts/
  23. Hey Guys I thought I would start by first introducing myself as I'm new to this forum along with a basic medical history. When I was approximately 5 years old my parents witnessed me becoming sick on one particular night. They told me that I exhibited a noticeable fever and it was quite obvious that I had a high temperature. On the other hand they never recall me complaining of a sore throat however they do remember that this was the first time I ever showed symptoms of OCD. On that night while having my fever I complained of having a Green Monster in my head and my parents tell me that it w
  24. Hi, I've been away b/c I've been too sick and was out of town. I had my tonsils removed monday and I'm shocked at how much pain I'm in. The oxy. is only bringing it down to about a 5 and I'm still having a hard time getting any sleep b/c of ocd. Last I tried to eat, I threw up quite a bit, so I'm hungry too. I went to Rochester to Mayo clinic to see a neuro-immunologist. Before I even came he had made up in his mind that it was depression after speedily reviewing a few records even though I brought all of my records organized. Every question was if my family had depression and I talked ab
  25. Hi, Called Dr. B but they said they do not take my insurance and even if I come in they are not doing IVIG right now and if they did my ins. wouldn't pay for it. They said they will put me on a waiting list if I want, supposed to call back. Can someone please give me another immunologists or another doc that does IVIG. LLMD thinks IVIG would be good for my DS. Nothing else has worked. thanks His Mom
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