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Found 22 results

  1. For those of you who have tried LDI for strep - what has been your post LDI experience - does your child still get strep infections? if yes, how do they react to these infections - do they get regular strep symptoms (minus flare)? Do you see their immune system fighting these infections? My worry is that if i get my child "sensitized" to strep, his body is going to ignore strep as an antigen - his defenses are going to be lowered as a result of the sensitization. Hope this makes sense.
  2. my 14 yr old dd - officially diagnosed with PANS ( combo of lyme exposure, & strep) we are in week 3 of treatment (we along with our provider suspected is was PANS)- daily regime - zithrox 250mg, minocyline 100mg, 1000mg D3, probiotic, herbals - TBB plus & OPC Our provider doesn't believe in steroids, so we are this course for now. We are new to the PANS/PANDAS ( 3 months to get to this diagnosis) - we've heard about other treatment options - just wanted to get others opinions thanks
  3. Question - my ds 14 is currently in treatment for PANS/PANDAS - we are in month 2 of recovery and making progress - we are visiting family for Christmas and one of her cousins is currently being treated for a strep throat infection. We are all supposed to be staying in the same house, what precautions should we be taking?? ( even thinking about staying in a separate house). My ds is currently taking 250mg Zithro and 200 mg Minocycline daily along with 1200 mmg NAC, 2000mg D. We want to avoid having a flare...
  4. Question - how long does it take to recover from PANS/PANDAS? I know every case is different, but just try to gauge where my dd is in her recovery . She just started 2nd month of treatment(abx &herbs) -headaches & light sensitivity have gone but still has hearing sensitivity & cognitive issues. We believe it was 7 months from her exposure to the time we started treatment....
  5. My son (16) has been having episodes of vomiting since he was 10. The episode last usually 3-4 days , he won't be able to have any food stay down and thrown it's like a switch.... it stops and he could eat whatever he wants. He tested positive for gluten allergy at 10 yr. He has had strep multiple times as a child and numerous ear infections. The reason I suspect PANDAS is that there seems to be a pattern of when the vomiting starts it is right after he complains of sore throats and achiness. His strep titer is elevated . I just had him at his doctor on Monday , she ran an overnight strep , so far it's negative . If anyone has been through something similar or has any information please let me know.
  6. Hello everyone, my name is Arindam i have been suffering from OCD for last 8 years and always tried to find out what exactly causes the disorder and up untill now never really looked into the topic of PANDAS and how it could trigger the onset of OCD . But from what i have read i understand that PANDAS usually happens if children (ages upto 14) gets infected with group 'a' strep bacteria causing strep throats or scarlet fever which confuses their own autoimmune system to mistakenly treat a part of their brain (basal gangila) as foreign body and attacking it instead of the infection or along with the infection. Does anyone know or has any idea whether a child could develop PANDAS and then OCD from group 'b' strep as well ?
  7. Hello - I live in Seattle, WA and am in the process of having my 12-year-old son diagnosed - he has all the symptoms of PANDAS including recurrent strep throat (at least 1 or 2 times per year since K and he is now in 7th grade.) We also have a family history of autoimmune issues and rheumatic fever. Strep was diagnosed last in October 2016 which we treated with antibiotics. When erratic behavior began at the end of Nov he had no symptoms of strep, thankfully we tested and surprisingly he tested positive for strep again. I'm specifically looking for: 1. PANDAS friendly physicians in the Seattle area? 2. PANDAS families or a support group in the Seattle area? 3. Insights into getting into the PANDAS/PANS clinic at Stanford or any other place with leading experts? 4. Any tips on schooling & dealing with Seattle Public Schools to get services for children who are medically fragile such as in-home tutoring since he is unable to attend school? 5. Does it seem possible my son may have had PANDAS since age 6 - first grade - and we didnt have the MAJOR outburst of symptoms unitl age 12 - 7th grade? Just curious if others had a similar situation as in each time the child got strep things got worse and worse over the years - but in between things were mostly okay? We will be seeing Dr. Hatha Gbedawo who is an ND and listed as a PANDAS specialist on PANDAS.org. We will also be seeing a neurologist Dr. Ming at CHMC. We already saw an immunologist and psychiatrist at CHMC, but both physicians made it clear they were NOT PANDAS experts. I reallly want to find an MD - neurologist or pediatrician in the Seattle area who is PANDAS knowledgeable so I will have the option to explore both western medicine treatments such as steroids & IVIG as well as looking at the eastern medicine side working with ND Dr. Gbedawo. So far I am not having much luck finding someone who can prescribe and treat with IVIG - (hoping Dr. Ming is a possibility.) The very first time my son showed major separation anxiety and started having difficulties in school was first grade. I thought the problems were solely due to ADHD & dysgraphia/dyslexia. I now realize this may have been PANDAS and/or PANDAS causing an exacerbation of co-morbid ADHD & dysgraphia. My son has had two rounds of antibiotics since December and has had some symptom relief, but he is still having extreme anxiety and is unable to attend school. He has now been out of school with the exception of a few days here and there since Nov. 28, 2016. It is agonizing watching him be in so much distress (mostly anxiety) and not feel like we are directly treating possible inflammation on his brain with continued antibiotics and/or anti-inflammatories. We have started regular vitamins and fish oil to try to help with the inflammation, but that is not cutting it and we need a PANDAS specialist to move on with treatment. Thankfully we are not seeing tics or obvious OCD - (although I fear there may be some hidden OCD issues.) We are seeing: restricted food intake; extreme anxiety; separation anxiety; emotional lability & depression; irritability, aggression and oppositional behaviors; regression; deterioration in school performance; increased sensory & motor skill issues; somatic issues including nighttime fears and inability to sleep in his own bed. He was picking at his thumbs until they bled, but thankfully that has stopped. Not sure where this fits in other than an "escape" from this nightmare, but he has become obsessed with his cell phone and will not be away from it for any length of time. Huge fits and rages if we try to limit it or take it away. Any thoughts you have would be greatly appreciated! Thank you in advance for reading our story and taking the time to share your thoughts.
  8. Hello, I'm looking for advice about my 5 year old daughter. We are trying to determine if she is having behavioral issues or if she could have PANDAS. As a little background, she has had recurrent throat infections (many times strep, sometimes not conclusive) for the past couple years. Her tonsils have been very enlarged for about a year, and she is having them removed next month. She has also been diagnosed with autoimmune hives that have covered her body (they do respond to antihistamines) for about a year. She also has a history of having behavioral reactions to artificial food dye, and previously had a milk protein (FPIES) allergy that she has since outgrown. A little over a year ago she had strep and her behavior was very "off". Very defiant, seemed hyper, etc. But, it improved. Shortly after that she had a sudden raging unexplainable tantrum, was afraid to be without me, physically fought me and her babysitter from trying to get her into her car seat. It was so aggressive and abnormal that I drove her immediately to the pediatrician's office. It turned out she still had a tonsil infection. It took a couple weeks but her behavior returned to normal, she wasn't having separation anxiety, etc. Since then, every time she is sick, she has crazy tantrums or very defiant behavior beforehand and sometimes after. For most of the spring, she was throwing daily tantrums in the evening, became very constipated (which we initially thought was the cause of the behavior, but now think it was partly a behavioral thing because she would refuse to try to go), and she ended up having a double ear infection and was congested for the whole time. Again, off and on the symptoms would come and go. The tantrums would last for two hours sometimes, lots of mean talk, crazy laughter, spitting, hitting, throwing things, hiding in a closet, trying to get away from me and my husband, but then wanting me at the same time. They typically end because she is physically exhausted or sometimes she will cry uncontrollably until she's exhausted. She will often not remember the tantrum, and can never explain what she is upset about. The end of the summer improved (she wasn't sick), and it all came back when she got sick again in the fall. It's been off and on - she can go weeks with "normal" behavior. Every time she is sick (sometimes a sinus infection, sometimes strep) her behavior changes drastically. She is very well behaved at school (with the exception of two infections ago, she was not herself at school but the nurse couldn't find anything obviously physically wrong with her...she barely spoke, looked in a daze, etc...had a high fever and strep the next day). and for other caregivers. She typically has tantrums at night (they have occurred at other times but not often), has a lot of trouble with bedtime and now usually needs someone in her room to fall asleep (this was never the case before). We can often sense when it's going to be a bad night because she starts acting "off" or overly silly, or can't seem to settle her body down and stay still to read a book. She also had a two week period recently where she was incredibly defiant about everything all day long, improved after a few days on antibiotics for strep. She often complains of lower leg and feet pain which is new. She often does baby talk and talks about wanting to pretend to be a baby again. She has also become very self-conscious and doesn't want me to say anything positive or negative about her to anyone, or relay a story about her. The pediatrician thinks it's behavioral and she can't cope with her constant sickness. It seems very much out of her control though. My husband is a social worker and also thinks it's beyond behavioral. He has said if she didn't have weeks of being "normal", he would think it was ODD or something else. She doesn't seem to have any OCD though. The only thing I have noticed is that often when she finally calms down, she will count on her right hand. Anyway, I recently saw a local mom post about PANDAS and it sounded very similar in many ways to what we are dealing with. However, we've had a lot of change (new school, new house) in the past year and she has had a lot of sickness, so I'm questioning if we should try to seek an evaluation for PANDAS or seek out a behavioral specialist. Does anyone's child seem significantly better in between infections? Behave "normally" during the day and typically behave fine for other caregivers? Thank you!!!!
  9. Very interesting reading from AoA Contributing Editor Teresa Conrick: http://www.ageofautism.com/2016/12/cdc-denying-harmful-human-vaccine-consequences.html "A particularly notable finding in our study is the 900% increase in noninvasive pediatric vaccine-related isolates that was associated with serotypes 19A...serotype 19A frequently recovered from middle ear fluid specimens. ● It is noteworthy that serotype 19A—the original multidrug-resistant serotype reported from South Africa in 1978 [41]—emerged in the United States after the introduction of PCV7 in 2000, and many of these isolates are multidrug resistant." "Vaccination with PCV-7 resulted in a shift in bacterial community composition and structure, with an increase in presence or abundance of several anaerobes, such as Veillonella, Prevotella, Fusobacterium, and Leptotrichia species; gram-positive bacteria, such as Actinomyces and Rothia species, and nonpneumococcal streptococci; and gram-negative Neisseria species…. Together with S. pneumoniae nonvaccine serotype replacement, these effects may further jeopardize the net health benefit of vaccinations with PCV.” http://www.ageofautism.com/2014/06/the-human-microbiome-evolution-of-vaccine-exposure.html Vaccination is likely to have important consequences for the NP microbiome. Current pneumococcal vaccines are directed against multiple serotypes thus potentially eliminating these from the microbiome. Based on observations on this and other vaccines, new organisms are expected to move into the empty niches created by vaccine elimination of organisms. Thus the structure of the microbiome is altered by vaccines. The unintended consequences of this alteration remain to be seen. It seems very possible that if the microbiome takes a hit, like mercury exposure or immune manipulation via vaccination, the more we may see the immune system diseases rapidly rise. Autism and PANDAS/PANS and other immune-damaged diseases deserve huge concern and true research." http://www.ageofautism.com/2014/04/autism-does-mercury-modulate-the-microbiome.html#more "... here are studies showing how it is the microbiome, not genes, that will lead the way in helping so many stricken with these symptoms: • That veil is only very recently being lifted with respect to a potential role for autoimmunity in neuropsychiatric disorders. This shift has occurred as evidence accumulates to support the idea that dysregulated cross-talk between the brain and the immune system is an important contributor to the pathogenesis of conditions as diverse as schizophrenia, mood disorders, autism spectrum disorders (ASDs), obsessive-compulsive disorder (OCD), Tourette syndrome and other tic disorders, attention-deficit hyperactivity disorder (ADHD), anorexia nervosa, narcolepsy, posttraumatic stress disorder and myalgic encephalomyelitis/chronic fatigue syndrome (CFS).[4,5] In addition, intriguing new evidence lends support to the possibility that not only the microbes associated with infectious episodes but also the bacteria of the gut microbiome can foster the production of brain-reactive autoantibodies, and that these microbe-induced antibodies provide the critical link between infection and neuropsychiatric disorders. • ….Eventually, as more pathogens are incorporated into the microbiome and levels of dysbiosis increase, people begin to present with symptoms characteristic of an autoimmune or inflammatory diagnosis......There is increasing evidence that autoimmune diseases run in families due to the sharing of common microbes.... The microbiome a child develops is a direct reflection of those harbored by the mother and close relatives. Microbes are introduced by a multitude of sources including the placenta, sperm,egg, breast milk, and vaginal canal.[37] …. Autoimmune diseases are more likely passed in families due to inheritance of the familial microbiome than inheritance of Mendelian genetic abnormalities.” "Note that the above study refers to "regressive-type" autism as a disease. I have watched my own daughter suffer for years -- infections, pain, neuropsychiatric symptoms related to PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and an autoimmune diagnosis shown by antinuclear antibodies. Since 1938, those with the symptoms called “autism” have been put on a spectrum, from low functioning to high functioning. It is very possible that their functioning had everything to do with a dysfunctional microbiome." Here is a good video by Stephanie Seneff on the association between glyphosate, vaccine constituents, gut bacteria and autism: https://www.youtube.com/watch?v=o3P6wVUH0pc
  10. Hello, New to the forum and I have a 16 year old that was diagnosed with Lyme using FISH testing as well as PANDAS using the Cunningham Panel. He tested positive for four out of the 5 antibodies they look for in guiding the clinical diagnosis of PANDAS. He also had sudden onset OCD, separation anxiety, ADD and now as an adolescent depression. His symptoms morphed with each repeat strep infection (5 in total) and became somewhat compounded. As it is now, he is being treated by a psychiatrist for depression, ADD and OCD and until recently was taking Prosac and Vyvance. I took him off all meds after 6 months of Lyme treatment to see if there was any marked improvement and there has not been. His OCD is manifesting with subtle, yet persistent, obsessions as well as consumption of sugar. He is apathetic, listless, unmotivated and ultimately...depressed. He has had two brain CT's and one MRI for an isolated seizure and spontaneous pneumomediastinum and all three images showed a persistent, opacified sphenoid sinus. What makes this interesting is that these scans span a period of two years and this sinus is still opaque!! Could it be strep? He was on Azithromycin for 3 months but the ENT we are seeing for his tonsils (who is not qualified to remark on his sinus apparently) said that it doesn't effectively treat strep. Could my son have a chronic strep infection in his sinus that is preventing him from responding to treatment? Any advise on what to suggest to the sinus ENT that we see next month would be appreciated. Samsmom
  11. Hi, My son who is 3 year 2 months had a positive strep yesterday with absolutely no symptoms. He has been diagnosed with Autism recently, has excessive running and other ADD issues, has shown some regression. One thing I remember, early on when we were concerned he developed vocal tics suddenly, this coincided with him going to a different class, so we were could be stress induced autuistic reaction. His behaviours did seem to come on suddenly, I remember telling a psychologist like some body turned on a switch, he had some behaviours like hyperactivity. But we have lost our kid completely since April. Our peds mentioned Pandas in June and brushed it off ( also our neurologist) so waited and called back, finally got strep test two days back and it is positive. our ped started him on amoxycillin. His anxiety is through the roof some times and he will go to the play area for a month and now he is totally scared/not interested in it, same with his bike. Wondering about our next steps: Should I get ASO Dnase, cunningham panel, but he tested postive for throat strep. Will the antibiotic make the ASO Dnase etc.. tests false negative. Should we wait to see to howm amoxycillin helps or add other antibiotics. Contacted Dr.K in chicago, did not get a reply for email, but can call back, we live in minneapolis. Thanks and sorry for my long post
  12. I'm hoping some of you can weigh in on this. Our 11 year old dd was first diagnosed in Oct 2014 following sudden and severe onset of separation anxiety and mild ticing. She has been on home tutoring the entire school year as we wait for her symptoms to improve. Initially the only positive test was for mycoplasma but as we visited additional docs and had more testing other issues emerged. Dr Ts testing revealed high Coxsakie B IgG titres and high IgE titres. Follow up testing revealed no allergies or parasites, the typical cause of elevated IgE. After 2 months of Zithromax, 1 month of Biaxin, and 2 weeks of Levaquin along with a large variety of supplements we saw no improvement and decided to get another perspective...though Dr T was great and we will likely seek his opinion again in the future. In the meantime we are now seeing Dr B in the Hudson Valley who is much closer to home and has been fantastic. Thinking we should have seen some progress he ordered up even more tests. Despite previous negative Lyme tests (Elisa and Labcorp) she is positive on the Igenex test and also came back positive for Anti-DNase B Strep antibodies and high HHV 6 antibodies. Dr B changed her to minocycline for the Mycoplasma and added Ceftin for the Lyme. What is especially confounding is that she is essentially physically asymptomatic with just occasional mild headaches and mild lethargy. Meanwhile her psychiatric symptoms have been pretty severe. She seems to have an immune system that is just not functioning properly. If anyone has dealt with PANS/PANDAS with multifaceted triggers I'd love to hear about your experience, your doctors theories, and treatment options....thanks!
  13. I have just been told my son likely has PANDAS. I knew nothing about it. After reading quite a bit I am putting pieces together. He was given amoxicillin the same day as his MMR when he was 18 months old, for strep, I think... still checking to be certain as it may have been for massive ear infections, if which he had many. Another piece of the family auto immune puzzle is that this same time he regressed into a world of autism. Yet another, I have an adult daughter 15 years older who is on the spectrum. But here is my reason for posting: does anyone know of or has anyone heard of a documented or researched connection to autoimmunity disorders related to infections other than strep? I had recurrent TSS for 25 years and nearly died from sepsis month after month when doctors at a prestigious clinic in Phoenix dismissed it as imaginary. Fortunately, I found a great doctor. Could staph have a similar reaction as strep in people who may develop PANDAS, people who are constantly exposed to it or are carriers ?
  14. This is really good overview on Autoimmune Encephalities. My son was checked for the NR 1 receptor for NMDAR encephalities in November but it came back negative. However, I still think my son has a form of encephalities because of his high glutemate levels. So I am going to see if our doctor will check for GABA receptors that affect the levels of glutamate. There is lots of information in this article. This doctor talks about different things that can cause encephalities. http://www.ssi.dk/~/media/Indhold/DK%20-%20dansk/Diagnostik/DiagnostiskHaandbog/Autoimmune%20encephalitis%2044.ashx
  15. Hi Everyone, New to this forum and so glad I found it. I was really hoping you give me your "in the trenches" opinion of whether we are dealing with PANDAS/PANS and what a reoccurrence might look like. DD5 has always been a bit of a challenge in terms of characteristics she displayed (inflexibility, ridged, OCD tendencies, sensory issues, etc) but we always assumed it was just her personality. Last May we hit our breaking point in terms of being able to cope with her behaviours and routines and we sought the help of a child psychologist. Within the first session she said it sounds like she has a lot of OCD tendencies to which my husband and I were shocked and didn't really buy it. We just figured all this time she was just a very particular kid. Her routines at the time were around always needing to perform 5 perfect cartwheels in a row, playing a game when we would walk through the door where all had to pretend she was a little girl named Sarah and she was visiting our family etc. We also had a lot of sensory issues around only wearing seamless socks and a couple of shirts she would accept. She got very bad nightmares and started sleeping in our bed every night as she was truly terrified to be alone. At the height of these behaviours, she had also just recently had Strep, Hand Foot Mouth Disease, and developed an autoimmune disease called Pityriasis Lichenoides which basically looked like she had chicken pox for 4 months. The behaviours weaned off, we dismissed the OCD and life from Oct to Dec were good. December she got strep again. First week of January we started with terrible rages that occurred every single day after school. She was very aggressive and abusive towards our family, but mainly me (mom). A few times, our little girl was so scary and out of control I almost called the police on her. Other OCD behaviours started up again as well (she had a circle drawer in her room where only circle things could go), had major separation anxiety. She did have a tic but it only lasted about 2 weeks and was very mild. She started rubbing and pulling at her fingers and tucking her hair whenever she was nervous. By the end of March, the rages weaned off (went from daily to 2 x a week) but the anxiety picked up big time. She was fearful of losing control of herself and hitting me again, she didn't want us to have people over at our home, didn't want to go out to familiar places, had a panic attack at the dentist (never a problem in the past) and has a lot of fears like dogs, needles, vomiting, germs, etc. To date, the anxiety remains and some days are worse than others...but the rages are gone, thankfully. We have been to countless doctors and everyone keeps saying there appears to be a PANDAS link. She is on the waitlist at the hospital for Sick Kids in Toronto to see Dr. Arnold. I think we are looking at November before we get in. She was recently assessed by a local psychologist who diagnosed her with Generalized Anxiety Disorder, Separation Anxiety, Social Anxiety, and has symptoms of Panic Disorder and OCD. Despite the residual anxiety, she seems to be coping okay and our days are much better than they were from January to April... but it is sad to see this anxious little girl we are left with. She even dropped out of her favorite sports because of the "people and performing". Here are my questions: 1. Does this sound like PANDAS to you from our most recent episode (Jan to current) and if so, is it likely that last May was also a PANDAS episode? She has not experienced many tics, nor was the OCD our major symptom - it was the very out of character rages and the depression that followed every aggressive rage where she would beg us to move to another home or tell us her life felt like it was dead. 2. My older daughter had strep throat 10 days again. I have been panicking that our dd would also get it and we would be back to the rages... so far, despite her saying her throat felt a little funny yesterday, we have no fever and no signs of infection. Her throat could have also been anxiety related as she gets a stomach ache and feeling like she wants to throw up every night at bedtime. If dd was going to get a strep infection from our oldest daughter I assume it would have happened by now..but let's just say she does...how long after the strep infection is diagnosed would the symptoms start back up again? If it is PANDAS is it a guarantee that a strep infection will bring us out of remission and symptoms start back up? Is there a chance she could get a strep infection and not react again *Note, dd has a history of testing positive for strep but never complains about a sore throat. Several times we have taken her to the doctor because she stopped eating or her voice changes and strep test always comes back positive. She also seems to get yeast infections quite frequently I'm so sorry this was so long. I think I needed the outlet...... Any help or advice is truly appreciated.
  16. DD is showing improvements (overcoming some OCD behaviors and doing some online school work), but liver enzymes are elevated. Could it be (wishing) that the antibiotics and antifungals have done their job and she just needs time to learn to be "normal"? I want to give her a break from the meds, but don't want to interfere with necessary treatment. I also don't want to do harm by continuing meds that might be damaging her liver... Have gotten no reply yet from the provider...
  17. My son had an IVIG treatment 2 weeks ago and now has strep. I just don't get it. He is homebound. Is he getting strep because someone in the family has been around a person that has strep. Are we bringing it home to him or is the IVIG lowering his immune system. He just had a penicillin shot yesterday morning and he woke up with a fever this morning. I took him into the doctor and he tested positive. Is it normal to get strep while doing monthly IVIG treatments? His vocal tic, headache and tremors are much worse. I just want this nightmare to go away.
  18. This last week my son caught strep throat again while on an antibiotic. The first time happened back in January. With some recent testing, some doctors are begining to suspect that my son had rheumatic fever when he was young. This testing is being done through some research studies and shows these antibodies have affected the heart. My son has also had testing in the past that showed elevated Anti- Dnase B Strep antibodies. Which I think this means he has had past infections in the past. I was told that it was not normal to be getting strep while on an antibiotic. So my son is going to getting a Penicillin shot every 3 weeks and he is also going to be getting monthly low dosage IVIG trestments. Our insurance has approved of the IVIG. The IVIG treatment will be done inpatient this weekend. Our cardiologist is in charge of the treatment. He is aware that my son has a low IGA. I can only think of a couple of times when this rheumatic fever might have happened. This problem is also caused by strep. If it does not get cleared up, does the strep hibernate in the body and caused the antibodies to build up? With this type of situation, I could see how this would affect blood pressure and heart rate. I am excited that my son is going to be doing the IVIG but I'm hoping it won't make his symptoms worse. I have explained to him that this is a possibility and that it may take several treatments before any progress is made. I am going to contine to work on his diet and his cardiologist is also interested in see his 23 and me test results. He also told me to go ahead and try P5P with my son at night to see if it will help with sleep issues. Since this strep infection started, he is having trouble getting to sleep.
  19. Hi this is my first post here, long time lurker. My DS has had a massive increase in OCD, Tics (especially shouting out and compulsive apologizing). His brother had a sore throat fever and when we tested at the ped he was positive for strep. My DS is under Dr Latimer's care but we are not sure how to counter the effects of strep in the house. This is the worst flare I've seen since he was diagnosed 2 years ago! Really need some help if anyone has insight! Thanks!
  20. 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 …
  21. Hi, I am 26 M. I am having eye twitching since i was 12yo .I used to have cold once every year but not as severe as the one i had 20 months back. Took over the counter medicine.No antibiotics.Stayed at home & Cold lasted for 3 days.On the 4th day i resumed work & started clearing my throat occasionally.I thought its just because of the mucus.But in a week or so it matured into throat grunting. I also consulted 2 neurologists and i told them about the infection,they said 'it doesn't matter'. Since it was a sudden onset of Vocal Tics after infection, i am considering strep. Can it be? I have never ever had vocal tics before. I got the ASO test and expecting results shortly. If the ASO levels come out high, what should be my next step ? I would be visiting the ENT in a day or two. Or what kind of a doctor should i visiting? If it indeed was a strep that lead to the onset then is their a possibility that the treatment can reduce/cure the vocal tics ? I came to know of PANDAS just a month back. Also take a look at this article - It states the tics can be eliminated if due to PANDAS - does it seem legit? ttp://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment
  22. I am looking for advice re: PANS and an exacerbation of PANS symptoms in my child. I had strep throat recently and although my son did not get the infection he developed some of the typical PANS symptoms and is clearly having a flare up. When my son has a strep infection we know to treat with 4-6 weeks of antibiotics however we do not know what to do when he is exposed to strep but is not personally ill with the infection. Wondering what has worked for others? We have started him on a course of antibiotics and have noticed dramatic improvements although we do not know if we should do the full 4-6 weeks or stop after a 10 day course. We live in a rural area in Canada and took our son Florida to be assessed and diagnosed, local doctors do not know of PANS or how to treat. We were given a great report from the FL clinic but it did not indicate how to treat a microbial excacerbation. Any advice?
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