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Found 206 results

  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 for reading!
  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 is willing to collabotate with other doctors since this condition is affecting DS blood pressure and heart rate. I guess the other question, I need to ask is Will your specialist collaborate with your main doctor? Hope I am not confusing you. I live in Oklahoma and our insurance will allow us to go see other specialist but treatment with IV has to stay within our state. Rachel
  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. that specializes in Autism & PANS & PANDAS He is a well respected Doctor who is in California I am just watch my son all the time since he started taking it, looking for changes. Your thoughts would be appreciated.
  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. Doc from NYU said brain spec from 2010 was bad, memory areas showing no activity. He says my sons immune system is working over time....producing antibodies to the infections but doesn't think he really has these infections anymore so doing the IVIG will surpress and help calm down his overactive immune system. currently seeing LLMD and will of course see what he thinks about all this before we do anything, also going to see immunologist. So NYU doc wants to have another brain spec done, then put DS in hospital for 5 days where he'll get another EEG of brain and spinal tap done as well as do IVIG for 5 days. Then he'll come home and if all went well with the IVIG in hospital, then he'll schedule IVIG for once every 2 weeks at home anywhere from 3 months for up to a year. In reading old post I thought people only did 1 IVIG then not another one for many months later? I don't know what to do....can this set him back? As bad as he is we are very thankful he's as good as he is. Should we just continue as we are? Basically just trying one thing after another, praying something will work? Should we take this chance? Please, any and all opinions are welcomed. Terry
  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 voice, rashes on face come and go. Currently my ds is wheelchair bound and I thankful for the strength he has to be able to transfer in and out of the chair. In the beginning of this illness, we had to rent a lift for him. If this is truly PAN/PANDAS, these antibodies can do a lot of damage to the nervous system. Has anyone experienced anything simular to this with their child? From reading many post, I understand that many of you are using natural supplements and special diets. I have already been using supplements and the vitamins that were recommended in some of the threads. I have not tried any diets yet and realize this may be the next step. However, my son has been tested by the gluten sensitive tissue test and it came back negative. My son also has a low IgA but is not defiencient. So I'm not sure if going gluten free would be of help. Would love to hear some of your opinons on a gf diet. My ds is 13 and puberty seems to be delayed in some areas. I am wondering if this is the reason for the hoarse voice. It comes and goes through out the day. Some days his voice is fine. Overall, I am frustrated and just want some relief for my son. However, I really would like to know if IVIG or Plasma exchange has helped a child that has been sick for a long time. Sorry for the long post. Rachel
  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 voice, rashes on face come and go. Currently my ds is wheelchair bound and I thankful for the strength he has to be able to transfer in and out of the chair. In the beginning of this illness, we had to rent a lift for him. If this is truly PAN/PANDAS, these antibodies can do a lot of damage to the nervous system. Has anyone experienced anything simular to this with their child? From reading many post, I understand that many of you are using natural supplements and special diets. I have already been using supplements and the vitamins that were recommended in some of the threads. I have not tried any diets yet and realize this may be the next step. However, my son has been tested by the gluten sensitive tissue test and it came back negative. My son also has a low IgA but is not defiencient. So I'm not sure if going gluten free would be of help. Would love to hear some of your opinons on a gf diet. My ds is 13 and puberty seems to be delayed in some areas. I am wondering if this is the reason for the hoarse voice. It comes and goes through out the day. Some days his voice is fine. Overall, I am frustrated and just want some relief for my son. However, I really would like to know if IVIG or Plasma exchange has helped a child that has been sick for a long time. Sorry for the long post. Rachel
  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 illness my son's health has went down hill. He was diagnosed with Postural Orthostatic Tachycardia Syndrome in October 2011. My son has been on medications to help with POTS but his symptoms have continued to get worse when ever he gets sick with a virus or infection. This last year my son had several different test to check for other immune related illness. Last August in 2013, my son had his first Cunningham Panel Test. This first test result showed to be in the first gray area between unlikely and likely. About a month later, my son had a double ear infection and all his symtoms (vocal tics, hypersensitivity, headache, and scalp pain) went through the roof. My son is currently in a PANDAS study and the Cunningham Panel was ran again. This time all the antibodies were highly elevated. I was told that PANDAS is normally something that happens all within 24-48 hours. Can PANDAS be progessive? Or is this PANS? Rachel
  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 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.
  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 in my memory was when he was 21/2 and i got call from daycare he was stumbling! Took him straight to dr., walked like a drunken sailor, and sure enough, strep again. Flying the next day on vacation I asked for shot of antibiotics. From the moment we got on plane,and for two days after, he was "out of his head", screaming, inconsolable, irritable, but with little words. I was about to take him to Standford ER when he passed out. The next day he seemed better, but from that point fw I feel he was and continued to forever change. When trying to get tonsillectomy done, we didn't pass pre-certification at first, they couldn't figure out why his PT, PTTs and I think neutrophils were so off. Tested for leukemia, lymphoma, von wildebrands etc. I was worried that he'd have leukemia or hemophilia. Finally, they gave us the approval and said that sometimes repeated infections can cause Autonomic System Irregularities. Post surgery he was better for a time and then things started to fall apart. Preschool teacher said just fall off the chair sometimes, really out of it and spacey sometimes, know things one day, and then not the next. I took him to Neurologist, who tested for Fragile X and some other rare syndromes, also ordered EEG. All tests were normal. He continued to catch every virus and bug. Next couple years, he was extremely fatigued, falling asleep mid day, always sleeping so hard he'd wake up wet. He complained about his legs and arms hurting him occasionally. HIs eyes started to not track together and occasionally not focus on you. He started to walk on his toes. I took him to orthopedist. Still had trouble with cognitive processes, but progressing very slightly. Next year he started with eye blinking here and there and started to become "adhd" like. He became overly sensitive to even the slightest light, smells of things he used to eat all the time, now bothered him, and sounds too. I then noticed a hacking cough, but not all the time, and he would sweat up the bed like crazy. I thought maybe he had apnea or tonsils had come back? Did overnight sleep study that was all clear too. Though changes were physical in the first couple years, in the last few they have been more mental. For a while his smile seemed more like a growl. His once easy going, happy disposition became one that was irritable, easily upset, and extremely emotional. We had to watch on Tippee toes when he joined the little sports teams. He seemed to get really agitated when he exerted himself. I found his pupils to always seem dilated. He was going off a cliff and I could not figure what was going on! I ALWAYS thought that strep, stumbling, and out of head episode had something to do with everything. I looked and researched. Finally found PANDAS. I watched the next time he was really "off"-- the obsessing over batman, the personality change, the throwing his body around, nighttime wetting, and waking up with a sore throat…took him to dr…STREP! I don't even remember if I asked my regular pediatrician about pandas- but waited 5 months for Dr. B. He agreed with pandas- took blood, and put him on antibiotic and prednisone. DS did not do well on steroids…crazier behavior, extreme melt downs, crying then hysterical laughing. When we saw for followup- I told him how awfully he did with prednisone- reiterated his symptoms of low grade fever, night sweats, fatigue and hacking - and he said sounds like Lyme and Babesia. Ordered Igenix lyme test and he was IGG positive through Igenix, not CDC, and Lyme IGM negative by both standards. He was positive for Babesia, both IGM and FISH. Started with antibiotics and got an apt with DR J. I thought he would be put on IV antibiotics, given his sensory and nuero symptoms and likelihood of having this for while. We continued to see both Dr, with seeing Dr. J more and Dr. B not so often. DS definitely made gradual improvement a couple months after starting treatment. But I would say he is only to 50%. Dr. J says DS has immuno-encephalopathy, but not offering any treatment. Dr. B ran more tests (mostly strep based i think) to see if anything else was coming up. DS continued to have episodes, and trouble with psycho-social issues. Some days would seem better, but he would fluctuate so much. In September, just back to school for week or so, he was again in exacerbation. He was really off his head. I called my ped and asked to have Cunningham test asap. Numbers came back sky high for Dop1, Dop2, and Tubulin, with the other 2 in range. Results were at far end of PANDAS LIKELY. We actually had our DR. J visit that same week and I knew he was still a bit off..after treating lyme for whole year, and only having positive IGG results, it NOW said IGM positive both IGENIX and CDC! What does that mean? I did call the office, but they really didn't have much to say. We have another visit scheduled for the end of January. THEN in November, DS started had for the first time ever - physical tics, almost like spasms, almost a cough with his whole body jumping. This ramped up for day, double checked on his strep- he was negative, but I took his sister and she was positive. The tic slowly went away. Since then though he has had them again, really really hard blinking and a CONSTANT coughing, inhaling tic. He also had a couple nights where he was really sweating it out. He is having super anxiety separation, panic attacks, and intrusive thoughts that go haywire. We were out again in SF visiting family. We went to Alcatraz and he could not stop worrying that the boat would leave us on island, and then worrying that he was going to have surgery there, and crying, even as we waited to get back on ferry. No amount of reassurance would help. I went to neurologist in NYC who has pandas listed as interest- she agreed that it's likely auto-immune, but not really where to go with it, other than get a LP. She also drew blood. She called saying nothing came back in blood, even lyme tests were all clear, strep etc... SOOO…I feel at a loss. He is having symptoms he's never had before, the motor and verbal ticks, crazy separation anxiety and panic attacks. If the lyme came back IGM positive after a year of treatment ...what does that mean? Is it the lyme or pandas? I feel it's getting worse or there's something more going on that needs addressing. Dr. J was ok, but he didn't seem to guide in any other kinds of ways. Thanks to this forum, I had him tested for MTHFR- he is compound hetero, but yet I got no guidance as what to do for that from either doctor. I did do the 23 and me and he has5 homozygous mutations and 6 hetero. But again I really don't know what to do with all of it. Should he be on IV antibiotics if lyme is still the culprit? Should I go about trying to get IVIG? I don't know how to swing it if not covered by insurance. What else can I do? We see neurologist on Friday- I think I want to have LP done, but should I wait for exacerbation? Should I be looking for another doctor?
  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 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.
  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 test Blood draw for research and clinical(CBC with diff, Chem 20, quantitative immunoglobulins, iron panel, strep panel & HLA) We have heard that mycoplasma, coxsackie, entervirus, bartonella, babesia, herpes, erlichia may also cause the development of OCD/motor tics. Any additions?
  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 for a child who had a confirmed case of strep 7 weeks ago? Thoughts?
  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 home, or with the parents, but not so obvious at school or other areas of the child's life than it is an environmental problem, like with the family unit. The thing is nothing has changed in our home. Same house, same job, no separation. She is the youngest of 3 and the other 2 are respectful, well adjusted children. They have never hit me, or told me they hate me, or spit in my face. I just don't understand why she is so difficult with me and my husband, but not with the teacher, etc inles the problem is me?????
  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 symptoms returned, however, some days they seem heightened and other days he seems back to his old self. What does this mean? Is there still strep present? Or is his brain still healing? What course of action should we take? The doctor refuses to do any more blood work until several months have passed. She wants him on Adderall and then for us to try Concerta to see if these help his symptoms. I'm not on board with that action at all...but don't know what to do.
  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 better? The things that are better is his laughing and sleeping. Been giving Japanese Knotweed which I believe did it. He's currently on Alinia, Minocycline, Nystatin, Malarone and Cipro. Of course on multiple supps. including Neem and Core. Did a stool test and it came back very high in Lactoferrin...90.7....normal is <7.3. Doc rx'd the Cipro for this...only taking for 14 days. His Lactoferrin back in July 2012 was only 19.2....so it went way up in a year. See LLMD on the 19th to discuss all this and see what they think. Also have appt. with neurologist (Dr. Chong) in Jan. and making appt. with immunologist. Any thoughts? thanks Terry
  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 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.
  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 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.
  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 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.
  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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