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  1. Qannie47 posted an interesting link on histamine levels and I'm thinking about asking our LLMD to check ds. There were just too many similarities in the description of high histamine kids/people to ignore. Has anyone else looked into this?
  2. 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
  3. If anyone can reccomend any books on helping treat OCD I would appreciate hearing from you. My ds will be 14 in a few weeks so not exactly dealing with a child. Here is a brief background. My son presented sudden onset tics with a strep infection several years ago. He had always presented with mild OCD but it was mild and did not interrupt any normal life. Looking back he probably had had a couple of pandas flairs when he was younger with strep infections but I did not recognize it until the tics started. I was fortunate enough to find great doctors who diagnosed pandas and started conti
  4. Hi there - would love to hear what people are doing regarding school. My DD is in middle school, so she switches classes all day long. She has a very hard time making it through the day. All the teachers and most kids knows she has TS, but she still is embarrassed and holds back louder tics then ends up doing softer, smaller ones more frequently, and then can't concentrate. She has a 504 and a modified plan where she can leave the classroom at any time and even does some half days to take the edge off. But it's still so tough. Thinking about home school/online learning but hate to take h
  5. 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.
  6. My daughter, Jessica, suffered with tics, ADHD and trouble sleeping for 5 years. There were disabling, but the OCD behaviors were most troubling. She would pull teeth out by the root, force her finger down her throat causing vomiting and injuring the inside of her mouth, hit those next to her, etc. We tried supplements, diets and other therapies. After years of research, trial and error, I found that the COMPLETE ELIMINATION OF GMOs from her diet effected a 95% improvement in symptoms. Why are kids of this generation suffering more than in previous generations? It could be the vaccin
  7. FASCINATING case study about a 16 yr. old boy presenting with neuropsych symptoms (severe, with hallucinations) All resolved with H. Pylori treatment and B12 injections. For those of you (like us) with the MTHFR C6677T snp, he had it also, and the psychiatrist noted that that mutation may have been why his symptoms presented differently than normal B12 deficiency signs. Also of note - if we have malabsorption issues, it's important to "bypass the pesky gut". (injections or sublingual...) At least until we can find out what types of gut problems we have, and FIX them! http://evo
  8. 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
  9. 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
  10. 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
  11. 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/
  12. 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
  13. 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
  14. 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
  15. Hello, we just did our first HD IVIG. Our main issues are tics and intrusive thoughts. For those who have done IVIG, if it is going to help, how long before you see any results? Especially interested in knowing if you've seen help in reduction or elimination of tics. Thank you!!
  16. Some things will change our lives temporarily, while other things will change our lives forever. As a child I was an active little boy who played sports and loved having fun with friends. Since the third grade though, I’ve battled various illnesses and issues. They may not have made a lot of sense at the time, but they were the beginning of a journey into a much unplanned lifestyle. It all begins with one simple, yet very complicated diagnosis. On Mother’s Day of my third grade year of elementary school I vomited before I went to church. My mom, who is a nurse didn’t thi
  17. Sorry to post about Riluzole here as well as in the OCD forum, but I noticed more Riluzole results in the Lyme forum, so thought I would try my luck. I've been taking Riluzole for about 4 weeks now: I began at 25mg and raised 25mg every week, and am currently on the standard dose of 50mg twice a day. However, in that time, I've been feeling more anxious, restless, irritable and am having trouble sleeping. I really don't want to give up, but it's been *impossible* finding any negative experiences with the drug, which has me a little perplexed. I've even emailed 4 researchers who oversaw
  18. The events I will tell you about occurred only 3 weeks ago. Suddenly and without warning I fell into a deep and dangerous depression. My mother was frightened at my state so she called the police and they found me huddled in a corner crying, not good. I explained to them that it is physical and I do not want to see another psychiatrist, I already see the best one in the state of florida. I showed them all my medical records. I showed them everything I was diagnosed with. I told the cops that I spend almost all day lying in bed with unspeakable and death-like fatigue and on top of it I hav
  19. Hello, We are hoping to find a doctor in the Midwest area who can offer extensive testing to treat our son’s symptoms. We would like a doctor not afraid to try a long course of antibiotics, as we suspect it may be related to a case of strep. A brief history; two years ago our, then, 13 year old son suddenly started showing symptoms such as “soft” ticks (not jerking, but squirming, repetitive body movements such as turning his head with his eyes rolled up numerous times. When he sees us looking at him, he “snaps” out of it), he frequently reaches several times to grab things before ac
  20. Well, I am going to post on this forum, an article I am going to reference mentions autism, please no one get offended. My topic is OCD, which is the predominant symptom of PANS. Wish it was all cut and dry: Do A, B, C, D, and it's fixed. It has not been like that for us, and others here, so perhaps this might help someone. I found a paper written by Amy Yasko from 2002 (!) that references OCD, inflammation, strep infections, and mainly, excessive glutamate in the brain - addictive behavior, and OCD seems like addictive behavior to me. I won't begin to try and give a synopsis on a
  21. My 10yo daughter is currently in-patient at Nichols Cottage in White Plains and not getting much help at all with her OCD. Does anyone know of a good CBT treatment nearby either in-patient or extensive (maybe an outpatient day program?)? Thanks, Valerie
  22. I don't have a doctor treating me right now and am getting drastically sicker by the month. I can't hardly sleep at all even taking tons of downers but I am severely fatigued, mostly in my brain with chronic migraines. Anyways here are some things I noticed going through recent labs (within the past year): Elevated DNase (224) but normal ASO. High titers to all: Coxsackie A and B (valtrex did nothing to improve that) high titers to Myco. Pneumonia (doctor never addressed this) high titers to parvo IgG4 - low IgA2 - low Basophils - absent IgG p41 - present (western blot) IgM P
  23. I am a 27 yr old female who was recently diagnosed with PANS. I also have the diagnoses of: M.E./CFS, IC, POTS, complex regional pain syndrome, GAD + treatment resistant depression, excessive daytime sleepiness + non-restorative sleep. The ocd came on suddenly in 2010 when I was around 23 or 24. It's always been magical thinking surrounding the issues with my bladder and sleep - which are both very extreme. I've been in therapy for 5 years and tried MANY medications. I am currently on: klonopin, xanax, zyprexa, bystolic, and zoloft. I have tried MAOI's, anaphranil, and other ss
  24. Someone here mentioned that lamictal is helpful for ocd in pandas b/c it reduces glutamate. The more I read about this, the more fascinated and excited I get b/c of the overwhelming evidence to support this. The government is doing clinical trials now with the ALS drug: riluzole (http://clinicaltrials.gov/show/nct00523718) in the treatment or augmentation of ocd. They say 70% respond to ssri's and CBT, but the other 30% don't and that there has been successes with the glutamate reducers in the reamining 30 percenters (which would include me; I've tried most of the ssri's, maoi's, ant
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