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Found 206 results

  1. I've been conversing with a few other families off-line over the last couple of months as we prepared our DS for the transition from high school to college, and I thought I'd drop a note here in the event some others are staring down the barrel of college decision-making. I also wanted to make sure and thank a few of you who tread this ground before us -- most especially Emmalily -- and gave us some great advice! Thanks! So, for quick background, DS was likely "a PANDA" by the age of 3, but we didn't know, nor did we get any help with medical interventions, until he was 12 -- almost 13 -- and headed into 7th grade. He became so badly debilitated, however, that he went from fully functional if quirky to completely non-functional within the space of about 3 months. Finally, after almost two years of abx, lots of therapy, continued supplements, and tough love, DS returned to functional and managed to close out his senior year in high school summa cum laude. He continues to battle a degree of OCD and anxiety, particularly when under stress and/or transitioning to a new, unknown situation, but for the most part you wouldn't know he was any different from most bright, healthy kids. In our college search, thanks to some great advice by knowledgeable folks like Emmalily, we knew we wanted to find a college that: 1) offered a low average student-to-teacher ratio; 2) was within a reasonable drive from home; and 3) had a disability office that was readily accessible and pro-active, as well as, of course, offering the programs that DS wanted to study. One very valuable tool we also made use of was a chance for DS to participate in a short (3-week) summer program on a college campus the summer between his high school junior and senior years. It gave him the experience of living on a campus, keeping his own schedule, living and dining among peers, getting himself to class, etc., and we think that it had an invaluable positive impact on his confidence and coping when it came time to actually leave home for the real thing. We found his "dream school" about 1 hour away from our home with the curriculum he wanted (computer engineering). It's a smaller school with a lower student-teacher ratio (9:1) and a readily navigable campus. DS attended two, short, on-campus "readiness" events -- a scholarship weekend for interviewing for a variety of scholarships and a summer orientation session -- that once again added to his confidence that he could manage living on campus. We made advance contact with the Director of the Disability Office for the school and provided her a copy of DS's IEP as an example of the sorts of accommodations (extended time on assessments, etc.) that had contributed to his success in high school; she was very accessible and communicative and assured us that his accommodations could be met on campus via the Americans with Disabilities Act and that she would notify DS's professors. She also offered a "mentorship" program whereby DS would be "matched up" with an upper classman on campus to help him get in the swing of things. DS has had two brief subsequent one-on-one meetings with her since he's been on campus, mostly to fill her in on his classes and professors, to reconfirm which accommodations, if any, he feels he needs given the nature of the material and the teaching styles, etc. and to introduce him to his mentor. In short, she's been great -- available, but not intrusive. So, DS has been on campus since mid-August, and he's doing great! That's not to say there haven't been ups and downs . . . moments when he called me to say he didn't like this (the dorm showers) or felt uncomfortable with that (some social activities designed by his RA) . . . but he's figuring it all out. He likes his classes -- actually loves some of them -- and, knock on wood, is keeping up. He's making some friends and making peace with the parts of college/dorm life that he'd prefer weren't parts of the picture. In other words, he's adapting. Thanks again to all of you who've helped us on this journey, and here's wishing all of you happy and safe transitions as your kids continue to grow! Nancy
  2. I don’t post very much because when my twins are home from pre-school the minute I open the iPads they both grab one & jump on ABC Mouse. Background: my son is 3.5 years old he has had PDD-NOS since he was 18months maybe longer. He has a twin brother & they were initially both verbal at 16 months then one progressed verbally & social and the other had terrible diarrhea & stomach problems for many months & he then did not progress, he actually regressed for a year. I see a DAN that was in California but is now in Florida & my son is on Methyl B-12 injections, DMG, Digestive Enzymes before meals & cod liver oil & Probiotics. No dairy no wheat and limited carbohydrates is his diet. After 60 days of Methyl B-12 & DMG he began to talk, he can spell and writes things to me with his ABC sets that I bought him. He ACES the spell curriculum on ABC mouse (more than his Nuerotypical brother), but he is not social and he still vocally stims very loudly 3 times a day for an hour each time. So 3 hours a day. At that time it is very difficult to pull him out & back with us. This usually happens when people are at our house or if we are in a store. Currently he is on his 3rd round in 6 months of Fluconazole & Cefdinir. He makes big social & verbal gains when he is on this course. He can communicate better and stims a little less. Two days ago I accidental missed his Fluconazole and he had trouble communicating the next day, so now I am thinking the Fluconazole is the most helpful. Where do we take this? I need advice? IVIG? Stem Cells? Fecal transplant from brother? GcMAF? What could replace these medication rounds OR do the medication rounds sometimes help workout the problem for good? Please let me know.
  3. Hi there everyone! I'm so happy to have found this forum. I have an 8 year old son who has had tics on and off since about 3 years old. He doesn't fit into the Tourette's diagnosis and I was always told by his Drs. that he'd grow out of his tics, but they're still here! He's had strep a few times and I'm taking him to the dr. soon to talk more about PANDAS. My question is: He has taken antibiotics a couple of times since the tics started, could it still be PANDAS? I don't know if some antibiotics only target certain areas or if any antibiotics that he's taken should have wiped out the strep infection if that's what is causing his tics. Thank you so much for any information!
  4. Hi, I am new here. We think my 8 year old son has had PANDAS/PANS for 5 years. I found out about PANDAS/PANS a year ago but was talked out of it by providers until earlier this summer when he flared again. He is finally being treated at MGH. So my question is what to expect now. So far this summer, he has been on amoxicillin (1.5 weeks, no effect and came down with bronchitis), ceftin (1 week no effect), ceflex (15 days no effect), and augmentin for the past 4-5 weeks (some improvement at first especially with appetite, but not sure). Because we wanted to do everything we could to improve things before school, we tried a 25 day steroid taper. we have seen really wonderful results from it up until the past couple of days. We only have 6 days left on the taper. Also, since the steroids were really interfering with his sleep we broke down and started melatonin again 4 nights ago (I had read it lowers the effectiveness of steroids). The last two days we have seen his anxiety ramping up. Any thoughts? Have we lowered the effects of the steroids with melatonin? What does it mean if he did great on steroids, but we see things creep back as he tapers off? Thanks!
  5. Hi. I was told to post here, so I thought it would be best to just repost what I did in the tic/Tourettes forum. Hope that's okay: Posted Yesterday, 08:48 PM First, I want to thank Sheila and the staff for their amazing web site/forums and incredibly helpful book. I am so glad I found these amazing resources!! Please excuse the long post, but it's been a long story.... But it is: My 8 y.o. son started ticcing when he was 4--mildly, no one really noticed but me. Then, they went away within month or two. When he was 6, they came back. He started ticcing more regularly but still mildly and intermittent. In March of 2015 at the age of 7, his tics became so bad it was completely dramatic. Happened two weeks after having an ear infection and being diagnosed with seasonal allergies. Having read about PANDAS, in May, I asked for strep testing after he had the ear infection. His ASO test came back at 707 (normal is up to 200). They put him on antibiotics and he was tic free for two months--May until July. Then we saw a neurologist who said he doesn't have PANDAS because it's so rare and he didn't have the dramatic change, I guess. I still didn't believe it so we had his ASO repeated in July and it was in the 400s. His pediatrician said it was coming down, so the strep was not the reason for the tics. Then in September, I wanted to see the levels again, and it was lower but still in the mid 300s. I pleaded with the doctor to giv ehim antibiotics. She did, Amoxicillin 10 day trial. But no improvement in tics. In November, we had him tested for the last time and it was still in the low 300s. His tics went from eye blinks, to facial rolls, to throat clearing, to grunting--all at once or separately. The grunting has been going on since October. It happens several times a minute. Sometimes several times a second, it seems. Then when I had enough of no one really caring, I wanted to get a final opinion, so we saw a PANDAS expert in December, Dr. Josephine Elia at Nemours/DuPont in Wilmington, DE. She was great but said he didn't have PANDAS because we have a family history of tics (my dad has motor tics but no vocal tics). She did a thorough evaluation of him and said although he didn't have PANDAS, he looked allergic so recommended allergy testing to us. Even though to anyone else, including his parents, he didn't appear the least bit allergic. But I guess they can tell from the color inside your nose (grey?). We also put him on Claritin and then Zyrteck for 6 weeks (as recommended by Dr. Elia), as well as a netti pot. No improvement in tics. We also did a dairy-free trial for two weeks and no improvement. We saw a great allergist in King of Prussia, PA, who has an integrative medicine background. She tested him for 55 allergens and found he's allergic to just about every outdoor allergen, dust mites AND our dog (as well as cats, but we don't have one). We would have never guessed he was allergic as he's never had any symptoms other than seasonal ones in the springtime--no other time. Could this be the allergy coming out in tics? Or is it just a trigger to the tics? It breaks my heart that he's allergic to our 10-year-old dog that we've had since he was a puppy and before our son was born. The allergist said we don't have to get rid of our dog, but that we have to make a lot of changes, that we're prepared to do. Dog out of his room/daily vacuuming/HEPA filter/ dog shampooing weekly. And then the supplements (high end/expensive) Omega 3s, Probiotic, Multivitamin and B-Complex. Tonight he started shoulder shrugging and neck bending. It's bad. Just looking for direction. I'm glad we have some answers in that he definitely has allergies, but I just don't know what to do with this information. Other than treat him with the supplements and see if it helps. Do you think it's the allergies causing the tics? Any advice is appreciated. Thank you!
  6. Last year I attended a conference at Brown on PANDAS. An IVIG study done at NIMH was presented and I am curious if anyone has seen any published information on this study. The results presented were not convincing that IVIG was effective in treating PANDAS. Many families are still paying large amounts of money for IVIG and fighting insurance companies. I'd love more information should anyone have found further information connected to this study.I do have the powerpoint but it is too large to attach. I am happy to share it through email.
  7. My daughter was diagnosed with pandas three years ago after a sudden onset of crippling OCD intrusive thoughts. She had previously had episodic stretches of eye blinking tic, urinary frequency, generalized anxiety, and some OCD tendencies but the thoughts knocked everything out of the ballpark. They came on fast and took over. AFter 5 or 6 months of we found a pans doc who put found that she'd had mono and probable Lyme (equivocal ELISA test but negative WB) and put her on ABX for many months. The thoughts disappeared and we had our daughter back - quicky but totally free of horrible obsesive thoughts of violence/sexual/social stuff. Flash forward two years. She gets abx resistant respiratory staph (along with her sister, who also had strep) and then she gets diagnosed AGAIN with mono. Exactly two months later the thoughts come roaring back like a bad dream and starts again for our family, especially me (mom) who she confesses to. No doctor could explain why my 11 year old has had mono twice in her life and her regular family practice doc says it isn't pans and that lyme docs are quacks. Great conversation we had before I took my children elsewhere. After visits to PANS psychologist and LLMD's were uncover that she is lyme positive both CDC and IGenex. IGM Bands 31 ++,39+, 41+, 83-93+, but IGG band 41++ only. HEr LLMD starts her on ABX on top of anti-inflammatories prescribed by PANS doc. (Turmeric and EPA) LLMD says we will never know how old the lyme is, though from what I read IGM means acute (not old) infection. I have so many questions. My daughter had multiple bites as a young child in the NE states and I know now they were mishandled. No prophylactic abx, improper removal of ticks (including a time I totally botched it and the head was detached). She had chronic drenching night sweats as a four year old, along with extreme night terrors and major sensory issues. She also had massive reactions to any bug bites and every summer ended up in the ER when a fly bite led to her eye swollen shut or her nose or face disfigured. She also had bites on her back that for 6 years flared up periodically. No doctor could explain it. They would be red and hot and itchy, despite being years old - this would happen every 3 months or thereabouts and came along with a deterioration in behavior. I feel intuitively and practically that this lyme is old, but I can't know for sure, according to our doctor. IF it is an infection aquired 8 years ago I worry for my daughter. I just want to understand, and I want her to be healthy. I see how tired she is, out of breath from the simplest bike ride or run or typical childhood activities. We went roller skating today and she kept collapsing next to me out of breath. Her ped. detected a bit of breathing abnormality indictative of lung inflammation but had no suggestion of what it might be due to; and suggested steroids. We did not go this route. Looking for hope, feedback, insight. I feel so sad and stressed. I live and breathe for my children. BTW her LLMD was surprised that her Igenex babesiosis was negative.
  8. My 11 y/o son is homozygous for COMT V158M and H62H, MAO-A and MTRR. He is heterozygous for MTHFR C677T, A1298C, AHCY-01, 19 and CBS C699T/A360A. He is having tons of problems with depression, mood, anxiety, etc. He refused to go to school 4 days last week. He also has Lyme and Pandas. We are working with a functional medicine dr and put him on Prozac last week but now I'm reading that an SSRI with his COMT mutations may not be the right way to go….that maybe an SNRI is a better option. After 3 days on the Prozac he seems more irritable than before. Can anyone help?
  9. Hi All, I'm a newbie here as my physician only recently suspected PANDAS for my son. We've worked so hard over the years to get his gut healthy, but after one week of oral antibiotics I can see he is a positive responder. His negative thoughts are under much better control. Still, I worry about his gut health if we stay the course with antibiotics over a longer term. Has anyone tried IV antibiotics and high doses of probiotics as an alternative? Thanks!
  10. Somebody here made this test and willing to share it over here? (if that is too long for you, then at least post your arabinose results which is elevated with people with autism or similar problems, autism can be also aspergers such as high functioning autism which doesn't seem to be autistic on the outside) also write your background story of problems you have, anxiety, sleep disorders, aspergers, autism, pandas syndrome, etc.. here are my results: http://imgur.com/a/PnJil My problems: Severe social anxiety, schizoid personality disorder or aspergers (socially disabled - can't talk to people), generalized anxiety disorder, seasonal affective disorder (worse depression in winter), severe chronic insomnia (after lots of stress events), psychotic disorder, maybe PANDAS syndrome when i was a child (and maybe now it effects me in a way of depression and more), major depression (was mild depression but major after a break up with somebody i loved.. aspergers is autism, and i do think i have symptoms of high function autist.. i don't look like one but i'm very screwed when it comes to socializing with people, severely.
  11. Hello. I am new here. But I really need someone's advice. My daughter is 10 years old. 3 years ago my daughter started having OCD symptoms, she was washing hands a lot, and was worrying about a lot of things, she was tested positive for strep, after antibiotics she got better. Pediatrician thought she probably has Pandas. Now, about 5-6 weeks my daughter started to have anxieties at evening before she would fall asleep. She was saying that she worrying about something and she doesn't know why. Later she started having sexual thoughts about everyone she knows. (She doesn't know what sex really is, mostly her thoughts was about kissing, hugging...) This thoughts was bothering her a lot. Later she started having thoughts that she's hurting someone with knife, sister, mom, dad, friends... That was really scary, because in general she is very kind and loving So, I so it thought that Pandas came back, so we went to see a doctor. My daughter had rapid strep test that was positive, after that they did culture strep test that came negative. But she was on antibiotics for 10 days anyway. Symptoms didn't go away after antibiotics. Later we did a blood test that showed my daughter didn't have strep. That is why pediatrician didn't think my daughter has Pandas. I don't know what to think. We went to neurologist and he wanted my daughter to have MRI. Also doctor recommended to see it's a psychiatrist. But I really scared to go to psychiatrist, I am afraid that doctor will make a wrong diagnosis or will put my daughter on very strong medicine. For now I am giving my daughter vitamin B-complex, glycine, probiotics and chamomile. Also she doesn't eat sugar and caffeine. Sometimes my daughter feels normal for couple of days and then she starts having bad thoughts again. She is having irritability sometimes, and starting thinking about losing weight, and she is not fat. I Will appreciate any comments. Thank you.
  12. Thank you so much to everyone who participates in these forums. I have already found so much comfort and support in reading your words over the past year when our son started having vocal tics out of the blue. I am sharing our story for the first time now because of some recent developments that are causing us great concern. I have tried to provide as much information as possible and apologize for the very long post. I am posting this in the PANDAS forum but am not sure if the Tourette forum fits our son's profile better. Mid-February (2015): Our just-turned-four year old son, “A,” started making a repetitive vocalization that sounded like a faint, high-pitched tone. Over the course of a week or so, it morphed into a very loud involuntary squeaking noise that, at it’s worst, could occur multiple times in a minute. We went to see our family doctor, who examined “A” and reassured us that childhood tics were a somewhat normal occurrence and that “A” would probably grow out of them. We went to see a pediatric neurologist who talked to us about transient tic disorders (and the long-term possibility of Tourette Syndrome) and sent us on our way. Over the past year since the first tic appeared, there have been several cycles of tics being more and then less prevalent. They always appeared to be vocal in nature and included sounds such as humming, coughing, sniffing, and exhaling loudly. Sometimes they were confined to a specific time of day, like at meals, or at bedtime when we were reading books. Other times they waxed and waned throughout the day with no predictable pattern. We did our best to not call attention to them and to try to reduce “A”s anxiety when they occurred. In October we introduced an air filter in his room and observed a (perhaps coincidental?) reduction in the frequency of his vocal tics. In fact, for a period of time from about Thanksgiving until mid-January, we did not observe any tics and began to wonder if perhaps he had “outgrown” the tics as his doctor had suggested could happen sometimes. Then, on January 20 (2016) he peed his pants at school during an engrossing activity. This had never happened before. Over the course of the next several days, “A” continued to pee in his pants, often several times a day. We took him to the doctor to test for a UTI, which came back negative. We have since deduced that the peeing happens when he involuntarily tightens his abdomen - perhaps a new motor tic. Around this same time, “A” started having trouble sleeping again. He asked for Mom or Dad to lie next to him as he was falling asleep, and on multiple occasions he has awoken in the middle of the night and asked for one of us to sleep in his bed with him. Once, when I (Mom) was lying next to him in bed as he was falling asleep, he mentioned that he saw “red Santa Clauses” and “red buses” all over his wall. He asked if I could see them, too, and then (possibly covering up) said that he was “only joking.” He has started avoiding certain foods again, saying that they “taste funny” or that they’re “too sweet.” This includes foods that he normally consumes with great pleasure, such as granola bars, juice, peanut butter and jelly sandwich, and toast with honey. He started making funny twisting movements with his body, often having to stop in the middle of doing something to bend over and hold a counter or something for balance. He juts his hip out to the side or wiggles his torso. When reading books to him, he twists his head and torso to the side or sometimes puts his ear to his shoulder in a rapid fashion as if a fly flew into his ear. He fidgets his fingers as though he’s typing something. New vocal tics appeared, including a shouting tic (makes a brief shouting noise at random times throughout the day), and a change in volume mid-sentence. He also has been grimacing and putting his chin to his chest or tipping his head backwards, which can make his voice sound funny or distorted if he’s mid-sentence when it happens. He also talks occasionally in “baby talk” or gibberish, and sometimes loses his train of thought or appears to stutter slightly. His teachers have expressed concern that he is “losing his ability to speak” because they can only understand him part of the time. He received early intervention speech therapy from ages 2-4, but made such great progress that they stopped services around his 4th birthday (just before the first vocal tic appeared). His teachers recently asked if we should consider contacting the speech therapist for some “refresher” services, given the regressions they have observed in his speech. He has been very tired and has dark circles under his eyes. His teachers note that he seems very tired at school, too. He is sometimes listless at home and asks over and over again “what can I do?” When I give suggestions for activities that he usually likes to do, he rejects them. He has been choosing activities that seem odd or destructive, such as sharpening crayons or pencils over and over again until they are little nubbins, mushing things into crumbs (e.g., food), scribbling roughly on a piece of paper instead of making a careful drawing (which he usually likes to do), and racing a truck back and forth across the floor and occasionally bashing it into other toys. These types of activities are occasionally part of his normal play, but right now they seem to be the only things he wants to do. Perhaps most concerning of all are the changes in his mood. It feels like a different child has come and replaced our normally inquisitive, focused, and generally good-natured boy. He has had about 4-5 huge tantrums over the past several weeks that have usually resulted in Mom or Dad gently restraining him because he tries to hit or bite. He fights and claws until he wears himself out (sometimes lasting 30-45 minutes), and the tantrums often result in lots of crying. We try to talk to him about what’s going on, to reassure him that we want to help him, to ask him if his tics are hurting his body, to validate how he has a lot of “big feelings” right now and that’s okay. He doesn’t like to talk about any of this, but sometimes validating his feelings makes him cry harder. It’s hard to imagine how scared he must feel about all of these things happening to his body. We went back to the pediatric neurologist last week and he listened to our concerns and watched the video clips we had taken. He did a basic neurological exam (reflexes, balance, etc.) and then proceeded to talk with us about Tourette Syndrome and OCD. It wasn’t a particularly helpful or illuminating visit except for the reassurance that there doesn’t appear to be an underlying life-threatening cause for these developments. We mentioned the possibility of PANDAS with the neurologist and received some pushback. Nonetheless, he made a note to our family doctor to do a strep culture but didn’t think a blood test was necessary. The rapid strep test was yesterday and came back negative. If the longer-term results of the culture come back negative, our next plan is to get a blood test. We are also planning to test for Lyme. We have an appointment in March (earliest available) with a local naturopath who comes highly recommended by our local Lyme Disease support group (even if it’s not Lyme, we think she will be helpful for exploring other issues). Prior to this recent onset of tics, he had two bad colds, which we just assumed were your normal, run-of-the-mill winter colds with a runny nose, coughing, etc. so we didn’t go to the doctor and they seemingly cleared up on their own. One last possibly relevant detail - when he was three, A’s doctor has noted that A’s tonsils are larger than average and we saw an ear/nose/throat specialist at the time. The specialist said that a tonsillectomy might be something to consider in later years so maybe it’s time to revisit that conversation? Questions: How can we help our son? What are the next steps that we should take in trying to get to the bottom of what’s going on? And what types of low-invasive efforts we can try at home (e.g., epsom salt baths) to try to bring him some relief in the short-term? How do you help your young child feel reassured when something like this is happening? What language do you use to talk to him/her about what’s going on? Any other feedback or ideas are welcome. We are distressed and discouraged and looking for any help we can get. ***Thank you for taking the time to read this.***
  13. Hello, my 8 year old son, mild/controlled pandas for 4 years, on August 6th had 3 pins (like nails) were yanked out of his healing humerus (had broken upper arm bone 3 weeks prior from monkey bars fall) by ped orthopedic surgeon. He was sedated with nitrous oxide and versed. He takes prophylactic augmentin daily and a weekly Zithromax dose for pandas. The next day he began a new and severe flare with food refusal. Working with dr. T. Many labs drawn, changed to cefdinir and Zithromax daily, no help. Now will try valtrex and biaxin. Forcing son to eat/drink, he lost 5 pounds, now 70 pds. Not currently dehydrated, eating between 500-1000 cal/day under duress. C/o nausea, fear of vomiting, swallowing difficulty. Also poor disposition: grouchy, won't go outside. In the 6 mo prior to arm break he would get a breakthrough pandas flare from skinning his knee or any break in the skin (bug bites). In the last 2 weeks of this yucky flare I notice he improves after he eats a treat with dark chocolate. Now I'm thinking caffeine, histamine, mast cell, etc reaction to having the pins pulled. But I have trouble wrapping my brain around this concept. Can't reach dr. T yet. Can any of you school me in how this works? The histamine, mast cell, inflammation, genetics, mthfr..... Labs, diagnosis, treatment.... Thanks so much.
  14. Hello, There is an article in the Fall 2015 issue of the trade magazine "Biosupply Trends" that summarizes PANDAS/PANS/CANS and provides highlights of some small studies that looked at efficacy of tonsil/adenoid removal versus antibiotic treatment. Interesting. Jump to page 48. http://www.bstquarterly.com/emagazine/currentissue/
  15. Does anyone know of a medical center that has all of the specialists needed to treat PANDAS / PANS under one roof? Thanks
  16. Hi, I'm a 19 year old man, kid, idk I'm sorta in between man and kid. Anyway I've always been a sort of weird kid, but very intelligent and high functioning. I always had some tics and weird mood behaviors, social awkwardness, etc. but was more or less a functioning member of society so my parents never saw any reason to investigate further. Over the summer I met with a therapist for the first time to help sort out attention/studying issues that I was having my first year of college and I ended up being diagnosed with ADD and Autism, I also used to be a major strep carrier, as an infant I had a severe case of scarlett fever and frequent cases of strep throughout my childhood, like multiple instances a year. Needless to say, PANDAs instantly came to mind, but I can't seem to find any info about how PANDAs affects people in adulthood. All these disorders are all new news to me, and while they explain a lot of my quirkiness, I'd really like to learn more about them and how they affect me, ya know? Any input from you guys would be greatly appreciated. Thanks, bentushar
  17. Hello, I am very new to the group, my 15 yr. old daughter has been newly diagnosed with PANS after doing the Cunningham Panel along with clinical symptoms. I will share her story another time but I need advice from others; She has been experiencing symptoms for nearly 3 years. I recently found a neurologist that took her symptoms serioiusly and after doing the cunningham panel she immediately started her on Azithromycin 500mg. 1 time per day. A few hours before she started the antibiotic she started to not feel well after starting the antibiotic now 10 days she has progressively gotten worse. She developed a sore throat,We tested for strep and it was negative) has been very weak, unable to stand for more than a few minutes, difficulty with walking, now anxiety, fear, bad thoughts, insomnia starting which for the most part has been handled due to dietary changes and supplements. I have a call in to the neurologist but need advice from others that have gone through this. Is it expected to have exacerbation of all previous symptoms before the healing begins from the antibiotic or is this a bad reaction to this antibiotic. I have seen that it may be better to use Augmentin or Amoxicillin. as a first line. Any suggestions or if anyone has used a Doctor in San Diego that they would recommend I would appreciate any input. Thank you
  18. Hi our daughter recently had a sudden onset of TIC and OCD behavior. The neurologist would only acknowledge PANDAS/PANS as "theory". All tests for strep at this point are negative. She previously has had strep and her private school routinely had a strep outbreak every few months to the extent school notices went out to alert parents of the symptoms. In researching this, I did find reference to other viruses that have been connected as a trigger for PANDAS however that was only one research institution studying PANDAS. Has anyone familiar with PANDAS found any other triggers, infetions or viruses, besides strep?
  19. Hello- just reposting. We are trying to get with Dr. L - but given her schedule - do you know of any other neurologist in the East Coast? Happy to travel, if needed. We are trying to get to an IVIG prescription - think its time! Anyone have any good suggestions. Thank you for your help.
  20. 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
  21. Hi, Does anyone know if its OK to give the Pneumovax vaccine? Both LLMD and immunologist wants my DS (24) to get this. LLMD because wants him to be protected and immunologist because we're looking into IVIG and wants to see if he responds to this.This immunologist does know about PANDAS, heard she is very well versed in it which is why we went to her. Right now he qualify's for IVIG because of his numbers. Saw neurologist last year who also wanted to do IVIG and didn't mention this, was just going to do IVIG but we weren't convinced then or ready to do it. Running out of options and hoping this will help now. Treated for over 5 years for lyme / babesia / parasites. Seeing top LLMD for over 2 years. Latest treatment was for bartonella....Rifampin paired with others since Dec. and no real improvement, so LLMD took him off everything and is currently on Difflucan daily for possible yeast. I'm thinking wasn't on the bart treatment long enough because bart streaks did appear about 3 months into treatment but now have disappeared off treatment. Anyway....any thoughts on the vaccine? thanks frikfrak
  22. We finally saw a top neurologist yesterday. He said my ds did not have PANDAS because his dnase titers where not high enough. I KNOW from everything I have read that he can still have PANDAS without elevated titers. My son has every PANDAS symptom except OCD and urinary issues. The doc did confirm he has chorea so I think he fits the PANDAS criteria. It is my understanding that he has to have OCD and or tics/choreiform movements plus some of the other long list of symptoms, but I have not read about any other patients who do not have OCD. Are there any of you out there? My ds does fixate on what ever activity he is interested to the point of obsession. He is using Star Wars as his current coping mechanism to handle his off the charts anxiety that is keeping him home bound out of school, but he does not have OCD rituals like excessive hand washing, etc type things. I guess I am looking for some assurance as I continue to press for this PANDAS diagnosis. My ds did show improvement with 14 days of augmentin. And when he went off the abx the symptoms came back! So he went back on augmentin 5 days later. I am just starting to see improvement now on his 9th day of augmentin. The neurologist said that said that the abx could not alleviate his symptoms because he did not have an active strep infection, and he said even if they did they would only treat the infection. From everything I have read I know this not to be true - that tons of kids have gotten better long after the strep infection was gone. The neurologist did want to test for almost a dozen other autoimmune diseases, and disorders that have chorea and anxiety as a symptom which could be helpful if I have it wrong and he does not have PANDAS. But I am still trusting my instinct and I am still thinking it is PANDAS. I am trying to get our pediatrician to test his dnase and aso again so we can see if anything as changed and also test for mycoplasma, herpes and mono. I would love any feed back from any of you parents who have been in the trenches much longer than me. Thanks!
  23. My 14 year son had his first PANDAS symptoms March 7th. He was put on a 14 day course of Augmentin. He improved significantly. Within 48 hours of stopping the antibiotics his symptoms came back. It took me 5 days to get his pediatrician to give him more Augmentin. She gave him 30 day Rx - 875 mg 2x a day. Can anyone help me with next step after that? Is 30 more days long enough? Should it be longer or should he go on a smaller dose for a while afterwards? I really need help with antibiotic doses and treatment guidelines. I am in Seattle and there are very few doctors who treat PANDAS here. I have an appointment with a specialist but we don't have an appointment until the end July. My pediatrician has been very cooperative in working with us and I think she actually believes that my son has PANDAS now after his symptoms came back after going off the Augmentin. But she does not really now how to treat PANDAS. She has just been going off of my recommendation. Unfortunately it has been 5 days since he went back on the Augmentin and we have seen little improvement. Any help with this is greatly appreciated!
  24. Has anyone dealt with burping, swallowing problems, reflux, spasms, etc.? What was the cause, and did resolving it reduce PANS symptoms? Thanks!
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