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  1. Yesterday, after three years of struggles and misdiagnosis we finally got our test results back and met with our doctor. My DS(7) is positive for Lyme, Bartonella, Babeosa and received a diagnosis of PANS. I am hopeful, because my son will finally receive the treatment and support that we desperately need. I have a couple of question that I'm hoping those of you with experience with these diagnosis can answer. First, my doctor is treating DS with Zithromax and another antibiotic (can't remember the name offhand). Does this make sense? DS is not currently in a flare, though of course, he is symptomatic.... Second, if your child had tic borne illnesses, once you treated those infections, did PANS flares continue? I'm terrified of what the next flare might bring. Thanks so much for any insights.
  2. Hey, I'm putting this article here b/c when I've searched for it recently it's been behind a paywall...but today it's not. So now it's here for safe keeping in case it becomes inaccessible again. Antibiotics have a role in PANS even with no infection Publish date: February 9, 2017 By: M. Alexander Otto Clinical Psychiatry News EXPERT ANALYSIS FROM THE PSYCHOPHARMACOLOGY UPDATE INSTITUTE SAN FRANCISCO – Antibiotics might help in pediatric acute-onset neuropsychiatric syndrome (PANS) even if there’s no apparent infection, according to Kiki Chang, MD, director of PANS research at Stanford (Calif.) University. first step at Stanford is to look for an active infection, and knock it out with antibiotics. Dr. Chang has seen remarkable turnarounds in some of those cases, but even if there’s no infection, “we still do use antibiotics.” There are positive data, “although not a lot,” indicating that they can help. Some kids even seem to need to be on long-term antibiotics, and flair if taken off long after infections should have been cleared. Dr. Kiki Chang “We don’t know what’s going on. We try to stop antibiotics if we can; if patients relapse, we think the benefit [of ongoing treatment] outweighs the risks. Some kids just have to be on antibiotics for a long time, and that’s an issue.” Perhaps it has something to do with the anti-inflammatory properties of antibiotics like azithromycin and amoxicillin, or there might be a lingering infection, he said at a psychopharmacology update held by the American Academy of Child and Adolescent Psychiatry. PANS is a recently coined term for the sudden onset of obsessive compulsive disorder (OCD) within a few days of an infection, metabolic disturbance, or other inflammatory insult. Anxiety, mood problems, and tics are common. There might be severe food restriction – only eating white foods, for instance – that are not related to body image. PANS broadened the concept of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS), which was first described in 1998, although it’s been known for generations that acute streptococcus infections can lead to abrupt psychiatric symptoms. PANS is the topic of ongoing investigation, and Dr. Chang and many others are working to define the syndrome and its treatment, and trying especially to determine how PANS differs from typical OCD and other problems with more insidious onset. The idea is that inflammation in the patient’s brain, whatever the source, triggers an OCD mechanism in susceptible patients. As a concept, “we believe it’s true,” he said. For now, it’s best to refer suspected cases to one of several academic PANS programs in the United States, as diagnosis and treatment isn’t ready for general practice, he said. If more than antibiotics are needed, Stanford considers targeting inflammation. Some children respond to easy options such as ibuprofen. Dr. Chang has seen some helped with prednisone, but treatment is tricky. There might be an occult infection, and PANS can present with psychiatric issues that prednisone can make worse, including depression and mania. Intravenous immunoglobulin is another of the many options, “but we really need about four treatments” to see if it helps. Cognitive behavioral therapy and family support also helps. As for psychotropic medication, “we often use them, but they rarely take away the acute symptoms,” and PANS children seem especially sensitive to side effects. “I’ve seen many of them become manic on SSRIs. I’ve seen some of them have very strong [extrapyramidal symptoms] with atypical antipsychotics. You have to be very careful; we don’t have any good studies” of psychiatric drugs in this population, he said. At the moment, PANS seems to be more common in boys than girls, and most patients have a relapsing/remitting course and a family history of autoimmune disease. Suicidal and homicidal ideation can be part of the condition. Dr. Chang believes PANS could be part of the overall increase in autoimmune disease and psychiatric disorders in children over the past few decades. “We have more kids who have special needs than ever before,” large, objective increases in bipolar, autism, and other psychiatric problems, as well as increases in psoriasis, nut allergies, and other autoimmune issues. “What causes it is harder to say, but there has been a change for sure in kids and their immune system development that does affect the brain, and has probably led to more neuropsychiatric disturbances,” he said. “No one talks about it. Everyone thinks that it’s some sort of pharmaceutical industry conspiracy” to sell more drugs by increasing scrutiny of children. “I think it’s caused by something in the environment interacting with genetics,” whether it’s infections, toxins, or something else. “We don’t know. Any kind of inflammation can be a trigger” and “we know inflammation” is key to “many psychiatric symptoms. I do think there’s something going on with kids over the last 30 years,” he said. Dr. Chang is a consultant for and/or has received research support from Bristol-Myers Squibb, Lilly, Merck, GlaxoSmithKline, and other companies. aotto@frontlinemedcom.com
  3. Hello, This is my first post, but I have been lurking here since April when we started putting together that our 7 year old ds' symptoms was more than just misbehavior. Working backwards, I believe that the inciting event was over a year ago about a month before he turned 6. He was diagnosed with both strep and impetigo, had a horrible rash and was put on amoxicilan and mupirocin. The next day his behavior shifted drastically. He was not himself. I scolded him for being mean to his younger sibling and he cut off a chunk of his hair. He was in a ridiculous state after, laughing uncontrollably and inappropriately. Making crazy faces. Dark mood. Didn't seem to care about any consequences. Overtime things improved, but this winter he had multi[;e strep infections in a row and his symptoms escalated. His math skills declined, his handwriting got worse (messier and drifting). My son who is normally empathetic, kind, introspective and a rule follower, is like a different person when he's infected, he's in this state he doesn't make eye contact (he normally does in conversation), there's a sort of wild look in his eyes, has trouble managing even the smallest disappointment, increased anxiety, rages, sometimes restricted eating--says he's not hungry. Rarely eats much for breakfast. Has a fear of trying new things (even foods he's had liked before.) I could go on and on. Things have largely improved since his 3 course of amoxicillan in a row. He's had a few minor flares that we haven't been able to figure out the trigger of--allergies? overheating? his younger sibling being sick with a fever? We are awaiting his blood work and the results of his EEG, but the partial panel that we did showed elevated strep titers and the sleep study that we completed showed sleep apnea. His tonsils are constantly swollen so we are pursuing an tonsillectomy, adenoidectomy. Since his symptoms are largely better right now the neurologist we're seeing, who specializes in PANDAs, said she doesn't want to put him on a long term course of antibiotics to avoid him developing a resistance but I'm worried about him not having antibiotics before and after the surgery. If you have pursued the T&A procedure, can you please share what you did re: antibiotics? And anything else you wish you had known when you started this journey. Thank you for taking the time to read this.
  4. Hi Please help my son. I am desperate! My son used to have mild to moderate OCD and controlled with Zoloft 200mg. His OCD basically did not affect his daily function. April of Last year, he had to take antibiotics for other purpose, but his OCD increased a lot. After the treatment course, his OCD relieved a little bit. In this year April, his OCD increased significantly without a clue. Blood tests showed high level of Strep A antibodies. Then we visited Dr. T for checking for PANDAS/PANS. He first gave him Augmentin and Ibuprofen, but OCD increased instead. At the same time, he ordered a comprehensive blood test which showed he mainly have high level of Strep A antibodies, no Lyme infection. Then he prescribed Clindamycin and Rifampin, his OCD got worse again. Lastly, Dr. T ordered Cunningham panel of tests, which indicated my son has autoimmune disorder. Dr. T. then gave him prednisone 50mg for 10 days and expected a speedy recovery after 2 to 3 days. Unfortunately, his OCD continued to get worse and even worse than before his treatment with antibiotics. Before the treatment, he could still make it to school. After the treatment, he cannot make it at all. Now He has to take more than 3 hours for morning routine due to OCD. All this blood test results seemed to suggest PANS but the conventional treatment does not help at all and even make his OCD worse. Please help me make sense of it. I am desperate. Thanks Louisa
  5. Is there a typical best antibiotic for treating myco pneumoniae? I have been on only the fairly common ABX before (zpack, etc) and noticed no change (except typically a worsening of symptoms - likely due to changes in gut bacteria?). Would appreciate any input!
  6. 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
  7. 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!
  8. We have an ND that we have been using for diet changes to help with Tics, etc, and she uses Berberine (a natural antibiotic) with her other patients when an antibiotic is needed. (She has never treated PANDAS.) ND's can not prescribe in Georgia. We are still "interviewing" MD's on the phone to see if we can find one familiar with PANDAS. Has anyone used Berberine to treat PANDAS? If so, was it successful? Thanks. Heidi
  9. Yesterday, one of our providers recommended adding Buspar to augment the Fluvoxamine which she also wants to increase. DD is still significantly impaired by her ocd and anxiety and sadness. Also taking antibiotics and antifungals. As I read and stress about the risks with the buspar & added SSRI, DH's reaction is thinking we should just stop it all and see what happens. I can't deny that I think about that option too. Have any of you just stopped the meds? (I know that the SSRI must be tapered.)
  10. We've only knowingly been treating for Lyme since mid-July, and added a 2nd abx (biaxin) and a biofilm dissolver in mid-Aug so I know we have a long ways to go. Ten days after adding that 2nd abx, tics started to decrease. So after an amazing first week of school where tics were quite low, DS picks up a cold and now he's worse again. Pretty much back to the beginning when he was only on one abx. Cold is gone, but tics are up. So I'm just wondering if the flares will lessen over time, as he remains on treatment. Or because the tics are autoimmune caused, and the treatment is addressing the Lyme/co, I need to do something else.
  11. So I noticed that DS' breath last night had a weird fermented smell. Kind of like he had a couple beers. I smelled him this morning and it is not so bad. Smelled his skin too but he smells normal ("mommy!! what are you doing?!?!") . I started thinking about yeast overgrowth; he's been on abx for 3 weeks and does take 50 billion units of probiotics. He's also on Sacc. B., which is a yeast, so I'm wondering if I should cut back on the Sacc.B for a bit. He takes his last abx around dinner, and his probiotics right before bed (as per the ND's advice). He hasn't had any tummy issues. Has this happened to anyone else? What should I do?
  12. When your child started on long term antibiotics or IVIG treatment, did your child have more troubles with viruses or infections in the beginning? I'm wondering when a virus or infection that is laying dormant in the body and the body starts responding to the IVIG or long term antibiotics if the body (cells open up) will start releasing these virus or infections. Is this possible? This may sound strange but I am wondering if this is what's happening to my son. He has had past testing that indicated strep antibodies and other viruses were present. His Anti-DNase B was 390and range is 0-170. This test was done in December 2013. If this stuff is being released, Could this be a sign of healing?
  13. My doctor wants us to try Oral IG. It is the IVIG used but not with needles, We are told to give him a childs does of Pepsid to stop stomach acid and the oral amount is small & given every other day for many months. It is expensive $600. a month and I am fully aware of that. Background: My son is 3.5yrs old, and is in & out of being with us.He has some OCD, it used to be EXTREME. He talks some but not conversationally. He did 20 days of Cefdinir 2 different times. On both occasions he did speak conversationally. And permanently lost some of his worst OCD & separation anxiety symptoms. It was amazing!!! So his conversational speech & socialness did go awa when we stopped the Cefdinir. He has a bit of a yeast Candida battle going on since he was a baby & so we could not keep him on long term antibiotics. I give him Sacchamoyers Ballardii & FiveLac & Nystatin to help that battle and that does work BUT it is not enough when he is on antibiotics. and I am nervous about long term antibiotics with long term Fluconizole/Diflucan. IS that a true concern? The Candida problem is reason we are thinking very seriously about the Oral IG because if he had to be on antibiotics for a year or two I think it is not recommended to be on Diflucan that long. I saw a post from doctor McChandless saying ORAL IG works well for some kids. Are there any families out there that have had experience with Oral IG, Please let me know!!! Thanks,
  14. Hi - my 12-year old daughter has PANS, I believe. Seeing PANS/PANDAS neurologist in northern NJ. Very elevated titers for myco (1400) and slightly for strep. Treating with Amoxicillin AND Zithromax. Has tics which may have actually increased since being on antibiotics (only about 9 days though). She will not take pills, tried Biaxin liquid but will not tolerate so switched to Zithro. Also has increased anxiety and has had one rage since on meds. Used to take Omega3 (Nordic Naturals with DHA for kids) , then stopped, and recently started again. Taking probiotic too. Her diet is GF and mostly dairy free but she is a picky eater and so has a lot of carbs. Trying to get her off sugar and carbs but taking the meds is easier when she has something sweet (nutella is her favorite chaser, also soy choc milk mixed with plain almond milk). Questions: Does anyone have any ideas/thoughts on antibiotics she is taking? Seen an increase in tics/anxiety/rages on these drugs? Read some kids have increased tics with Omega3 - maybe stop that? Any luck with steroids? Does anyone report ANY relief from just doing nothing - no meds, no discussion, just ignoring tics? All my daughter's anxieties and tics got 10x worse once I actually started looking into it and treating it. Started therapy. But scared to not treat myco and strep after reading Saving Sammy and online info. Any advice would be so helpful. Thank you. Bless you all for this forum and for your information.
  15. For those who are newer and don't know my DS's history, he was on Augmentin XR (amoxicillin + clavulanic acid) for nearly 2 years, fighting his way back to his "normal" from his worst ever exacerbation. We weaned off those abx almost two years ago now, and he's done well . . . no further exacerbations and no significant illnesses in the meantime, either. This fall, he's fought off two colds, the latest one of which was big, bad and long. Head congestion, chest congestion, laryngitis and cough. No fever, though, and no sore throat. Friday evening, he complained that his ear hurt. Complained again intermittently on Saturday, though a decongestant and ibuprofen seemed to handle it for him. Woke up Sunday and said that his ear hurt now more than ever, and we could see red around his ear, behind his ear, and stretching down his jaw line. Still no fever though. Hello MinuteClinic! Diagnosed with an ear infection and given amoxicillin 875 mg. oral, 2x daily, as well as steroid ear drops. After one day of abx and ear drops, he said he felt significantly better. Was able to go to school for the full day both Monday and today, and when he got home today, he was back to his old self . . . perky, happy, and thrilled to be facing a long holiday weekend. So . . . clearly no issue with antibiotic resistance here. Kid is responding exceedingly well to regular old amoxicillin after two years of taking its bigger, badder cousin! I think I might just have a "regular" kid with a "regular" immune system on my hands . . . finally! Crossed fingers, anyway!
  16. Hello, I am starting new topic to ask about this antibiotic, since you - members of this board - know probably most about antibiotics from all over the boards I know. So, in my son's urine in good lab Morganella Morganii was found. We're trying ot treat it with cephalosporins III-rd gen (Cedax). Don't know if successful - his urine is again in lab, but we have nice gains during the treatment. After the treatment his behaviour became much worse than was before. Probably becteria has not been distincted. Our DAN said that it would be best to treat it with ciprofloxacin. I read about this antibiotics and data looks horrible. What would you say about it? Is it safe to give it to 3.11 yo child wich weight is ~29lbs (13,5kg)?
  17. Hi all my 6 year old son has been diagnosed, i think...with pandas/pans. an explosion of symptoms began early summer. we went on a family vacation and everything was a level 10 out of 10. He was licking everything, biting objects, looking at fingers lined up, asking questions multiple times, concerned about his eating area, defiant, hyperactive, very angry and moody, and extremely anxious about being alone. We called his ped multiple times while we were gone, and the nurse just tried to say you're on vacation, maybe he's just adjusting. we knew something was very wrong. we saw her again when we returned, and she noted how different he appeared during the visit--on the floor, in constant motion, talking non-stop, and repeating things. she suggested counseling, as we have had many serious family stressors in the last year. i started looking online at information on tourettes and came across the pandas/pans stuff. he fit nearly every criteria. i also noticed dilated pupils were a symptom, which I remember seeing for months but didn't think much of it. same with urinary incontinence. he had about 6 daytime and nighttime episodes in 5 weeks time. he was out of school, so didn't notice much with writing. just that when I tried to sit down with him to do some schoolwork they sent home with kids to do for the summer, he refused and/or had a tantrum about not wanting to do the exercises. i scheduled an appt with dr k, who would be unavailable for one month. every day was/has been a nightmare and waiting to do nothing felt awful. i scheduled a ph consult with dr t who said he is "textbook" pandas. his bloodwork came back, and even though antidnase b titers were considered high, he thought pneumococcus was the triggering agent. he is on augmentin and biaxin right now. we saw a dr locally who refused to diagnose him with pandas (he won't acknowledge pans) since his strep titers were normal with a second round of bloodwork. we see dr k tomorrow. as i think back to his last illness that he had, it was in march, over spring break. he was sick with fever for 6 days. other symptoms were a cough so bad it often made him gag/vomit, but it was nonproductive. dr thought it was viral. 2 weeks later I noticed differences in my son, and that's when i began emailing his teacher to ask if she'd noticed differences. i mainly noticed tics, like blinking and facial grimacing, and hyperactivity. she said she, too, noticed but didn't think it was too bothersome. when i picked him up from school, he was so angry, nearly every day, that i thought something had to be happening in school. again, the teacher confirmed nothing was happening, he seemed ok, although she could no longer put him with certain students to do work like she used to, and that he had troubles following directions, standing in line, and staying on the carpet during reading. this is from a teacher who, up to this point, said she wished she had 18 children like him in her class! my son even said he felt like something was "wrong" with him. then I recalled a class field trip at the end of May I went on with him, and came home and told my husband that something was not right. he was very obsessed over the school bus and couldn't participate in learning activities. i began looking up adhd things. but as i said before, it's as if he could qualify for 5-6 dsm-iv diagnoses in one month's time! i've read some things here and feel very scared. it seems like something that never ends, or even gets better. i'm sure we'll be up against a decision on whether to try ivig or not. i've made an appt with a homeopath to begin treating, but i'm so scared to abandon traditional medical treatments. did i mention i have a healthcare background and am a scientist?? i really want to get at the core issue of the problem. i know everyone on here wants that too for their children. i'm just unsure how to go about it. i've never seen him so debilitated and i'm worried the next episode will keep him out of school. in fact i'm not sure how he'll fare with this upcoming school year, as he is now. he's on day 8 of abx, dr t prescribed 10 days. i'm wondering about recovery, what that looks like. his mood seemed significantly better to me two days ago. yesterday was a "good" day too. he didn't get angry as much or as intensely. but today i had a doctor's appointment and he was haywire--screaming "uuuhhh!" because i asked him to sit down, squeezing me out of anger (while I'm holding my 9-mo old), unable to be still, talking nonstop to the provider who was trying to talk to me, grabbing exam gloves by the handful out of the box, licking objects, etc. I don't understand....I thought we were on the mend. Can anyone share what to expect with recovery? are there good days then bad days, or is it different? same with recovery after ivig? how many rounds do kids typically need? I've read with younger kids recovery might be quicker/easier...is this correct? and what if the offending trigger is viral, not bacterial? what is the course of action then? do kids get better? and from what i understand, bloodwork is neither confirmatory nor disproving, so why the emphasis on it? does it really offer much useful information? maybe i'm misunderstanding this whole beast... i have many questions but will post later. i'm glad to have found a place to put ideas and questions out there.
  18. My dd16 is scheduled to start clarithromycin in the am and I have been reading the insert. It states that it could cause psychosis and, Lord knows, we have dealt with enough of that with the disease so I don't want it with the treatment. I see that several of you have experience with clarithromycin/biaxin and I am hoping that you can share your experiences with me. I am doubly worried because we are flying cross-country on Wednesday and I really do not want to create a problem. She is currently doing pretty well, although we are still dealing with eating issues and a very short fuse. She hasn't really been raging, however, and I am afraid to give her something that could trigger a backslide. I need to get her started on it because her summer is short and we need to get as much healing done as possible before school starts again. Soooo.....anyone have experiences? The good, the bad, the ugly???? Thanks so much for taking time to help. QueenMother
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