Search the Community

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?

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/articles/archive/2014/04/17/psychoneuroimmunology-inflammation.aspx?e_cid=20140417Z1_DNL_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20140417Z1&et_cid=DM42653&et_rid=490528222

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 continuous antibiotic treatment. He greatly improved after that. Now that everything else is almost under control we are left with the anxiety, irrational thoughts, and OCD. He can function as normal during the day but at night before bed the real anxiety sets in. He has to check on the (important) things in his life such as phone, golf clubs, computer, etc.... He has to make sure everything is where it should be before he can sleep. Make sure he has not lost anything, This takes about 20 extra minutes. He also worries that he thinks out loud during the day and people are going to think he is weird. I have to reassure him he does not think out loud. Finally, then he can relax and fall asleep. His doctor has said if I feel this disruppts his life then to call her and she will prescribe a low dose Zoloft. I have not wanted to try this yet as I am afraid it could trigger even worse thoughts. We have also never consulted a therapist as I don't need all the extra expense that would incur. Even with insurance the co-pays and deductables can add up. I would like to try to help him myself before any of this escalates and becomes worse. If there are some books out there any of you can reccomend on how to help him I would appreciate your advice. I have asked him to let me "check" his things for him so he can get some sleep and he has agreed to let me do some of his "checks" for him. I am sure this is probably not the right way to go about helping him get past this but in the short term it helps him get to bed earlier. Before I try giving him meds or expensive therapy I would like some guidance on how to appropriately handle this. Thanks, I am headed to the bookstore this weekend.

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 her out of the regular school setting. What do you all do? Does anyone home school? Special/private school? Would really love to know your experiences and what works/doesn't. Thank you!

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.

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 vaccination schedule, it could be the toxins in our environment, and/or it could be the consumption of food that looks, smells and tastes like the food we ate as children, but is in fact genetically foreign. www.SafePlate.net is informational, safe and without anything for sale. My hope is that if we can help another family, it will bring meaning to the years Jessica suffered. Please contact us through the website if you need any support with a GMO-free diet or to share your GMO-free success story. Best wishes.

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://evolutionarypsychiatry.blogspot.com/2012/11/b12-deficiency-and-psychosis-case-study.html

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 nature I decided to talk with a psychiatrist. The psychiatrist in our insurance group agreed that our child displayed all the symptoms of PANS and or PANDAS. The pediatrician was still clueless how to treat this since she needs an infection to begin antibiotics. On November 26 we were notified by teh National Institute of Mental Health that our child could participate in a study. It turns out the NIMH is doing a complete medical evaluation to diagnose and check for known PANDAS/PANS triggers and other neurological/auto-immune disorders. We will be coming home with a treatment plan for our child. We understand treatment may be made for some things and not others. Mom was in the pediatrician's office at the time I was notified. A doctor at the NIMH called the pediatrician; who flat refused to treat with antibiotics, and discussed beginning antibiotics. The pediatrician immediately prescribed a daily dose of 2000 mg of Amoxicillin (1000 mg 2 times per day with a body weight of 45 lbs. When we return I will post a list of all tests and or procedures with a reason why they were performed. I hope this information will help everyone else who is struggling with this.

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 while counting to 7 on his fingers. He did this in sets of seven (held up his thumb – counted to seven, held up his index finger – counted to 7 and so on until he was holding up 7 fingers). He counted to 7 by kissing the basketball before taking a shot. He kissed and tapped his stuffed animals 7 times each at bed time. He brushed his teeth then wiped his face with a towel seven times. He holds his bedroom door shut – pulling on the handle tightly for the count of seven (only at night after getting PJs on). He at times hums (or makes some kind of noise) instead of verbally counting out loud. I watched him playing by himself outside – count to seven, and then run down the street…stopped and counted to seven again (he was moved his head 7 times back and forth left to right) then ran back to the driveway. He would go up and down the front stoop after counting to 7. I did question this behavior but he told me that he counts to 7 because he is 7 years old. He said he counted to 6 when he was six (never did I see this) and he will count to 8 when he is eight. Another time he said he was counting because his brain makes him. He also said he doesn’t count in school (I’m afraid to even ask!). So that is the NEW behavior. Here is some background up until now. My son was colicky and needed to be swaddled tightly until he was around 4 months. At 5 or 6 months he had cocksakies virus – a really bad bought of it in his throat. He had cold after cold – which later developed into asthma (only with a cold) although the wheezing was only heard by the doctor. We saw a specialist and he was put on daily meds as a preventative measure at one year old. He took rescue meds with a cold only. When he was about 9 months old, he had a 4 week bout of diarrhea (tested stool found no cause). He seemed to rebound with constipation after this. At two years old we saw a specialist who said he was withholding stool causing the constipation. He was otherwise healthy but needed to go on Miralx & Laxatives to soften and encourage the release of stools without pain and to get his gut moving again. We continued for years with stool withholding. At 3 he had sensitivities to socks/shoes and it would take an hour or more to get out of the house and we’d all be in tears. We saw a Psychologist who said this was his way of having control since we were forcing him to use the potty while he was fighting and withholding. He started kindergarten and his teacher immediately recommended we see an OT for a Sensory Processing Evaluation. Findings…”There are several scenarios that may explain the distractibility/inattention as it relates to sensory processing; difficulty filtering out non-pertinent auditory information, the symmetrical tonic neck reflex not being fully integrated, and the sensitivity to tactile input or a combination of all three. Along with this, he has also exhibited inefficient processing of proprioceptive input, low average muscle tone and joint laxity that may result in distractibility.” And I thought he only having trouble with sock seams! My boy is the best hitter on the baseball team and can play the drums by ear as well as write music. Are these things all related and can it be possible this is PANS since the onset of OCD is out of the blue? Is there a connection to his recent flu mist vaccine or any of the other vaccines triggering the constipation, SPD and now OCD?? I don’t recall that he ever had strep (I am 99.9% positive he didn’t have strep EVER). I do remember him being on an antibiotic once for an ear infection. My mother swears I am a strep carrier as this is what my pediatrician told her when I was 4 years old. I would always have a rash and my brother would get strep over and over. So many times that his tonsils were removed at the age of six. My pediatrician doesn’t see a connection with the sudden onset of OCD with the Flu Mist and admitted she doesn’t know much about PANDAS/PANS. She recommended we watch my son and if it worsened or impacted his daily life to contact a Psychiatrist /Psychologist/or got him in CBT. We have an apt with a Psychiatrist this week. I’m waiting to hear back from the OCD child study clinic at Yale (Dr. Leckman) to see if my son’s case fits their study. Dr. Bouboulis in Darien, CT doesn’t have any openings and the wait list is so long that they anticipate possibly there will be a cancellation in the spring of 2014. Anyway…am I nuts for thinking my son might be having a PANS reaction? Thank you for reading our story.

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 contact-- he has never mentioned this symptom to me before. He has consistently been on antibiotics, and he has ongoing mycoplasma. Any help would be greatly appreciated. Thank you.

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/

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

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 was quite disturbing to hear. They tell me that they considered taking me to hospital but at the end they decided that it was best to just hold off and see how I was the next morning. I can't remember this time when I was sick and first mentioned the green monster however my parents tell me the next morning my fever was gone and I appeared "normal". However even though I don't remember this particular event I definitely vividly remember the Green Monster coming back again around the age of 5-6. He was a crystal clear image and would cause me a lot of pain and anxiety. It would constantly tell me that I was going to get sick from diseases and at the time I developed a strong worry about germs and catching illness. I remember trying to block this green monster image out of my head by covering him up with pieces of wood but he would just break through it and return. I can't remember how long he stayed around for exactly but he actually ended up leaving me for roughly 1 year. I would then say at age 7 he returned again as the same image but this time he was even worse. By that age I had heard of diseases like AIDS on T.V so the Green Monster kept telling me that I was going to get AIDS and other dangerous diseases. I remember trying so hard to get rid of him but he would just never leave my head it was as if he was stuck there frozen. I can't recall exactly how long he stayed around for this time but it could not have been longer than a couple of months and then just like before he left me. Unfortunately I never told my parents about this persistent problem because being at the age of 7 I just really never understood how serious this actually was. Anyway's after the Green Monster left me around the age of 7 for the 2nd time I ended up living a relatively OCD free life up until the age of 14 (Grade 9). From this point on to currently now I have been battling with severe Obsessive Compulsive Disorder. It would take me forever to explain the details about my OCD but basically they have changed from the previous contamination fears with the green monster to instead being centred around "Perfection". I spend hours everyday organizing personal objects into particular order and arrangement along with constant obsessive cleaning of other materials. I wish I could explain my OCD symptoms more in depth but like I said it would take forever and I'm sure you guys understand what I'm talking about. On top of my OCD diagnosis I have been diagnosed with what my doctor classifies as complex ADD which I guess could explain my poor behavioural problems in school along with early academic problems at a younger age particularly with Maths. I'm currently under a psychiatrist who is my 3rd doctor and he is treating me for Severe OCD and ADD. I have been hospitalized twice due to additional major depression and have unfortunately really never had any success over the last 7 years with improving my condition. I have been on the following previous medications: Lovan, Zoloft, Lexapro, Fluvoxamine, Buspirone, Lithium and Risperidone. At the moment I'm currently on Effexor, Ritalin, Clonazepam and Seroquel and if this does not work my doctor said he will most likely put me on Clomipramine. On top of medication I have completed an intense CBT course and Im currently seeing a personal psychologist 1 on 1. I'm happy with the treatment that I'm receiving as my doctor is fantastic however with no improvement I suspect that the real problem is not being addressed. I have done quite an extensive amount of research on PANDAS and I personally think that its quite possible I have this and it has gone untreated my whole life. Unfortunately I have been unable to find any strong leads on possible doctors in Australia who actually know what PANDAS is and even treat it. When I stumbled upon this forum when researching PANDAS I was so thankful to see such a supportive community of people dealing with similar problems. I'm writing to you all for any help and advice you can give because I'm really desperate in trying to improve my mental health. Therefore I have listed a few questions below and if anyone can shed some light on these I would really appreciate any input. 1) From this information do you guys think Its quite possible that I have PANDAS or another autoimmune disease? 2) What types of doctors/specialists treat autoimmune diseases like PANDAS ? 3) Do you guys know any specific doctors that have helped other patients with PANDAS or similar illnesses. If you have there contact information like an email that would be great and I'm not limited to just Australia my parents are prepared to fly me to the U.S if needed. 4. Just like any person I remember receiving plenty of sore throats when I was growing up but on the first night my parents saw me effected by my OCD they tell me that I never complained of a sore throat. However like I said I was sick and had a fever... Although If I did not have a sore throat does this then instantly eliminate the possibility of PANDAS? 5. If I do have PANDAS is it too late for successful treatment due to the fact that it has been so long undiagnosed ? Or is there previous adults who have been treated later in life ? Thank you so much guys for taking your time to read my story. You have no idea how appreciative I am of this and if you can help me in anyway with these questions or any extra information it would be amazing.

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 about the year I was bedridden unable to even lift my head b/c of deathlike fatigue and he said, "were you depressed?" So when all was said and done he wanted me to: see a psychiatrist, see a urologist, and take CFS classes on managing my fatigue. #1. I refuse to see another psychiatrist ever again. I've BEEN DOING THAT FOR THE PAST DECADE. My psychiatrist referred me b/c in 10 years NOTHING has helped. The mayo neuro claimed I was "treatment resistant" - I really hate that phrase, why not look for physiological causes instead of shoving more pills down my throat? #2. The urology dept. refused to see me. One of my ocd things is writing things down so I couldn't do a voiding diary. I tried to explain the ocd and they were really rude. I've seen tons of urologists at some of the best centers in florida anyways.............. #3. They wanted me to fly back 6 months from now and take some classes on managing fatigue. I think after 6+ years, I'm well aware of how to manage the fatigue. Was the doctor not listening when I told him that if I take a shower I have to lay back in bed b/c the post exertional malaise is SO BAD!? #4. He was a so called dysautonomic specialist, this is part of why I went, I have horrible POTS. He said it was b/c I'm inactive and lying in bed and left it at that. (the truth is, it started up when I was active and hiking then passing out in the woods on walks). WITH ALL THAT SAID, I have an appt. with Dr. Najjar in 2 weeks. Please send out positive thoughts and prayers my way. The flights nearly killed me, at one point on the plane I thought I was dying. Everything I do causes more and more fatigue and the motion from plane made me throw up. Dr. N's receptionist said he reviews all records before taking on patients so I hope that is a good thing..... that something stuck out to him or he thinks he can help or worth a try. Insurance covered mayo's appt but is not covering Najjar's. I'm worried about any tests that will be run as my mom and I don't have much money. We will try to get things covered post nyc. One thing is I've never had a lumbar puncture and I keep worrying about how much that will cost. We are trying to do what we can with insurance right now. Anybody have any tips in regards to showing up without insurance coverage, how tests will and can be covered? Thanks everyone for your kindness and friendship. Thanks to @trintiybella for you message. And powpow - for your continued support. Juliafaith.

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!!

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 think much of it. As any nurse would most likely think she thought I probably just had a stomach bug. Well this vomiting did not stop. As a little kid, I did not know how serious this really was. But I was soon to find out. See if this was a stomach bug it would have lasted maybe a week at the most. After days of still vomiting, with the amount of time vomiting each day increasing, we decided it was time to see my practitioner. The weird part about this was I felt fine one moment, and the next I would just randomly vomit. My doctor also thought I was fine, that it was just a stomach bug, so he instructed me to go on a bland diet. Not too difficult sounding really is it? I followed this bland diet for days, only the vomiting just got worse. I was losing weight, I couldn’t keep anything down, and I got to the point where I was throwing up twelve or more times a day. My mom would tell the doctor, “I was a normal little boy who loved to play and be active but in the middle of activity on frequent occasions I would have to stop to throw up.” Now that the vomiting wasn’t stopping, we knew it was time to start investigating. Doctors started normal testing first such as checking blood work and common allergy testing. Then I had a MRI to make sure nothing too serious was going on. I even had cancer testing done for different types of cancers. All the tests came back negative. At this point I was extremely drained so I started some calcium and other type of nutrient pills/shakes to try to build myself back up and maintain my weight. The doctors weren’t figuring anything out so they tried me on all kinds of medications and steroids. I even saw a specialist from a hospital that re-tested me for allergies. This time there was a diagnosis. They decided I was allergic to wheat, eggs, and dairy. This new diet was very tough. My mom would have to go to special grocery stores and buy expensive foods that didn’t contain any of these products. My food was so expensive that my mom was spending on average about $175 every week just on my food. After a whole year on this diet, I wasn’t getting any better. Still sick and vomiting, I was in fourth grade and weighed less than most second grade girls. Nothing much changed that year. I had special permission to leave the classroom without asking whenever I had to vomit. Fifth grade came and my mom decided to find a GI specialist. She contacted Dr. Miya, a specialist in three fields- Gastroenterology, Allergies, and Autoimmune Disorder. (Thank the Lord Dr. Miya really knew what she was doing). Immediately she started testing. I swallowed a camera pills to see how my stomach was breaking down food. One test I remember I had to have a tube go down my nose and have a balloon open in my stomach for a day, but was allowed to leave the hospital. This I remember was terrible. I walked around with a tube down my nose and a computer on my belt, and remember thinking when people looked at me in public, “I wonder what’s wrong with that little boy”? I had asthma testing done, and even a bone marrow test done which was my first surgery. Dr. Miya also decided to do some more extensive blood work to rule out the rare possibilities and she checked out my eosinophil’s, white blood cells. A proper eosinophilia range is 0 to 100. When she got mine back, they were over 5000. This was bad news to me, but very good news to her. Now she knew what was wrong. I had Hypereosinophila, my first autoimmune disorder. It would cause my white blood cells to skyrocket in number and they were attacking different parts of my body. It was the answer to what was causing me to throw up. Now Dr. Miya had to check out what kind of damage was done to my stomach. She did an endoscopy and found 4 ulcers. With a combination of a few meds, the condition was under control so I could eat and keep food down. Doing better by the end of fifth grade and that summer, I went into sixth grade thinking, “It’s a fresh start, no more worries”. Not long into the year I came down with pneumonia. I got put on antibiotics and felt better, but the pneumonia came back. It ended coming back five times just during my sixth grade year. To make matters worse, I started having psychiatric issues. After getting tested to see if my body could fight off pneumonia naturally, my specialist found out that I don’t produce antibodies to fight pneumonia, my second autoimmune disorder. From here on things got very intense very fast. One night I went to bed feeling great and upon wakening, I had overnight onset of multiple psychiatric issues. I went a long time not telling anyone about all this as I was embarrassed. In 9th grade I finally “came out of the closet” to get help. One psychiatrist (that I don’t see anymore) diagnosed me with five mental illnesses with various subtypes. My psychiatrists knew that this didn’t make any sense. No person can possibly have so many psychiatric diagnoses I was told by multiple psychologists. But I wasn’t responding properly to medications. They weren’t working on me the way they should and they didn’t last over an extended period of time. I would go through the same cycle with each new medication. I would do ok starting a med, but it never did enough, and never lasted. The medication may have helped initially, but I ended up feeling worse than I did before I started it. My episodes lasted from Sixth grade till now. After being told of “crazy true stories” like kids with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections), my docs are pretty sure that I must have a neurological- caused mental illness. I am going to Dent Neurology on the 4th of October. They agree now that my illness might be from having my autoimmune disorders. Plus I may have other autoimmune troubles that haven’t been diagnosed yet. This is great news to me for it’s the beginning of a new road to recovery for me. There is hope for a complete cure, for my mental health to be restored. Although the throwing up, pneumonia, and psychiatric issues would never have happened if it weren’t for the fact that my body cannot naturally fight off some pathogens. My diagnosis of an autoimmune disorder started me on a quest for the truth. I knew what they were telling me wasn’t true for me. I had to seek out the truth about the origins of my psychiatric issues by my own research. My constant research led me to make a connection between the autoimmune disorders and my mental health, a connection I had to point out to my doctors. Back when I was young, before I was diagnosed with an autoimmune disorder someone could have told me “your life can instantly change from the simple to the complicated overnight.” To this day I still cannot completely grasp the concept of it. But it’s true everything from doctor appointments, to testing, to improper diagnosis, to improper medications, to crappy diets, I’ve experienced it all. I will not give up though. We never know what might cause our lives to change or how may change. As for me, though my life changed “The Day I Was Diagnosed With An Autoimmune Disorder”.

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 trials in depression/anxiety conditions and none reported seeing the adverse side-effects I'm experiencing. They are, however, listed as uncommon/rare in the PI sheet. My doctor has no experience using the drug, so isn't much help. I plan to give it another week or so, but just wanted to know if anyone has heard of a patient growing more anxious/stimulated and if the effect was possibly transient? Thank you

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 have OCD. I AM DEPRESSED B/C I AM MISERABLE AND SICK. Once they hear "depression" and "ocd". I am baker acted but they promise to take me to the ER to get "fresh new eyes to look at my medical problems" b/c the cop is SOOO understanding since he has chrohn's. Insert "eye roll". I was taken to the ER and locked in a room for 8 hours, nobody came to bring me any food and water even though I told them I have TERRIBLE dysautonomia (hyperadrenergic pots) and need hydration as well as medication in the afternoon for tachycardia. They didn't bring me anything and it turns out they just forgot about me. None of the douchey doctors had heard of PANDAS. I told them I have movement disorder stuff. Fast forward to 10 pm, I have never felt so fatigued in all MY LIFE. A security guard takes me to the psych ward. I then have to do a 2 hour interview intake with a psych nurse, who in his defense was very caring and compassionate. By this point, I had periods where I thought I would pass out, I would drift in and out when finally in my bed. The psychiatrist who came in was my first doctor ever, THANK GOD, she had treated me for 4 years starting at age 18. She knew all the physical stuff and once she looked at my chart and saw that I'd tried almost every psychotropic medication, she let me go home. Sadly, they had NO recommendations for my depression which has not changed since that week. I share this experience to tell you don't go to the ER. The male psych nurse told me that right when they hear: "depression" "ocd" "insomnia" - to the psych ward you will be shipped. The ER doctors are in residency, arrogant, and don't know anything about complexity or rarity. The ER is way too busy and I was overlooked. This would be very detrimental to my health. That week I developed c-diff, worsening of tonsil and throat infection, UTI, and vag. yeast infection. I did not have any infections at the time I went into the hospital. I am still taking abx weeks later to treat them. I think the trip was far too hard on my body. I expected to be seen by a neurologist, someone, anyone, who was willing to help. AVOID THE ER.

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 actually getting hold of it or trying to get up out of a chair step a few times before actually going, and also a real struggle with homework. Up until then, he’s been an excellent student. He’s also had some instances of ‘brain fog’, and some more. Since then the symptoms have cycled up and down, and for periods of time he has sometimes shown no symptoms. We’ve gotten blood & strep tests, MRI & psych testing. One dr. says tics (and says if they don’t disrupt his life, don’t worry about them), another Dr. says ADHD, & another mentioned OCD. The strep test showed slightly elevated Dnase titers, but were back in the normal range when tested 3 months later so the Dr. advised no treatment. There are no cases of anything like this in our family [history]. Nor did our son ever have a diagnosis of strep throat. The symptoms are on the rise again & the “soft” tics & periods of brain fog. Needless to say we are very concerned ... Thank you …

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 Yasko paper ;-) http://www.dramyyasko.com/wp-content/uploads/2011/08/The-Role-of-Excitotoxins-in-Autistic-Type-Behavior.pdf Here is a paper on excess glutamate and OCD written in 2012 from the International OCD foundation: http://www.ocfoundation.org/glutamate.aspx And, a list of high MSG/endotoxins foods that release glutamate: http://www.msgtruth.org/avoid.htm Ibuprofen is known to suppress glutamate. So, on a personal note: this completely fits my kid. NAC/n- acetylcystine modulates excess glutamate- several recent studies, especially for Trichotillomania supression- I realized my dd has been chewing Trident gum excessively all summer, like all day (aspartame) other high foods on the list - she started skin picking for the first time- PharmaNac stopped it. Then I stopped giving it. Then, she picked up Impetigo on her face- back to antibiotics- OCD has been ramping up all summer- bought some more NAC, going to supp vitamin K, she has always done well with taurine, threw out the gum! (yes, I know about Spry) I've tried to supp GABA in the past- disaster - so it's not as easy as that to re-balance. We do not have CBS or sulfur MTHFR- Anyway, find this all interesting- maybe it might apply to someone else for help.

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

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 P39 - present (western blot) Very low NK cell count Low B cells Low NK cell activity / functioning B12 - too high (surprising) There's a lot going on with my cytokines but I cannot decipher any of that. My psych. is referring me to a neurologist who knows about neuro-inflammation so it's just me waiting to see if I am accepted. Also, right now my throat is extremely soar all the time and my mom checked my tonsils and said they were extremely huge and inflamed. Any thoughts on the labs? Thanks.

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 ssri's and atypical anti-psychotics. I CANNOT stop the thoughts. It is 24/7 and it keeps me from resting and sleeping - both of which I need as badly fatigued as I am. The medications make me even more fatigued and sedated. I wish to be free of this ocd but don't know what to do though I have a good neuro (he is my first neuro ever) and my psych. is more than willing to work with him. I have extreme sensitives to medication along with bizarre paradoxical reactions to them. I am also on valtrex right now for positive coxsackie A and B. Next step will be genetic testing and then hopefully IVIG. I don't know what else to do. My family (excluding my mother and brother) think I am lazy and malingering but all my life I was hard working and overachieving until I became completely bedridden in 2009. I mostly feel like my brain is rotting b/c of how fatigued I am and even though I am so sleepy, I cannot just lie down and fall asleep. OCD becomes its worst when I try to rest or sleep. I merely just wish to connect with other patients and learn as I haven't met any other CFS patients with these problems. It seems foreign to most of my online friends. Thanks, Chris

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, antipsychotics, and tricyclics with no benefit at all with ocd and very little benefit in depression). I've never tried lamictal and this seems like an interesting topic to bring up with my psych. tomorrow. I was just wondering if anyone else here had success in treating ocd and if they had tried any of the other ALS drugs? Thanks P.S. Excuse any mistakes I may have typed out or included in my information, I am very very sleep deprived day in and day out and I deal with an incredibly insane amount of fatigue and excessive daytime sleepiness. Reading is very very difficult for me as is retaining information.