Mayzoo

I also saw on another thread you look like you could use an internet drug interaction checker (never hurts to look out for yourself and your family): http://www.umm.edu/adam/drug_checker.htm

Probiotics help regulate my kiddos sleep. Something to do with the yeast overgrowth in the gut affecting the seretonin production. Here is an article about probiotics and sleep: My link. Diflucan and Nystatin are anti-fungal and kill yeast overgrowth. Flagyl is anti-microbial and bactericidal. Below are some books that may be helpful. Antibiotics do not kill yeast. They kill the "bad" bacteria and unfortunately the "good" bacteria that help to keep yeast in check, hence yeast overgrowth. You can go to any half price book store and look for a book on drugs in the medical/nursing section. I worked pharmacy for 20 years, so I have a ton of books and resources now. There are also web sites that are really good for looking up drugs both in lay terms and medical terminology. Flagyl lay site: My link More technical medical site: http://www.rxlist.com/flagyl-drug.htm Amazon Books Consumer's Guide to probiotics: My link User's guide to probiotics: My link Google book: Health benefits of probiotics: My link

She is a very good friend and I feel comfortable talking to her about it because we talk about a lot. She tells me about her frustrations. I want to help her but I also don't want to cost her extra expense of more doctors unless she can really be helped. In the past she talked to psychiatrist about add/ADHD issues, urologist about urinary issues, and teachers about math and handwriting issues. Etc..... I just have a feeling now it is all related. It Will help to have other posts to show her as our two boys are both very different with very different symptoms. It would be hard for me to say that they both have the same underlying cause of it all. Thank you I will share this with her. Give her the web addy to here after you speak with her. She can see that there are many different presentations for PANDAS. She can start her research on the internet and here for free, and proceed with docs and labs if she feels this is a good fit for her son's situation.

My DD has autism too along with three brain neurological malformations. She is ten now, and is roughly 4 or more years delayed expressively, but her receptive language is normal. It is very frustrating for us all, but probably her most. I have difficulties extracting or interpreting her symptomology most the time. I was beside myself when this all started in September last year with kiddo. I was getting ten to twenty minutes of sleep, then up for 2-3 hours (nightmares), then ten to twenty minutes sleep repeating all night long. She stopped talking all together for three months, and hollered almost non stop for that three months. Not screaming, not in pain, just a vocal tic of hollering. Then for two more months she began to speak minimally, but always in a whisper. She refused to go outside for four months (thankfully we home school so this was not a huge traumatic deal. I lost almost 15 pounds and she lost about 5 lbs due to food issues. There was a lot more we dealt with too. The good news is we are about 98% back to her normal. We are able to do school work again. We are sleeping and eating again. She speaks in a normal tone again. There is hope to get back to your family's normal.

Is your Augmentin the Augmentin ES? You can dose higher with that one because of its structure. My DD was 50lbs and took 1050mg twice a day of the Augmentin ES. If he is still positive for strep, you should consider getting a sensitivity panel done to see what abx his strep is sensitive to. My DD was confirmed for strep by a rapid test on 1-5 (asymptomatic) and I am unsure how long she had it before that. Her history looked like this: 1-5 + rapid test. 10 days amox 500 twice a day. 1-15 + rapid test. 10 days augmentin 1050mg twice a day. 1-24 + rapid test. 6 days of zith 250mg per day. 1-30 + rapid test. We decided to go forward with PANDAS treatment protocol in hopes that the strep cleared along the way. 30 days zith 250mg per day. 2-29 - rapid and culture test. 30 days zith 250mg per day 3-22 - rapid test. 30 days zith 250mg per day then attempt titrating down. I am not titrating down yet because I want to get some OLE on board first, and my first order was lost in shipping, so I just started it a few days ago.

I was also hoping someone had some insights on Dr David Owen.

During the worst of my daughter's illness her titers where ASO 6 and Anti-Dnase 95. Both very low. Yet, 6 weeks of abx and she was almost back to 100% herself. Anti-biotics have an anti-inflamatory property is how most seem to believe they help: "Although the empirical use of some antibacterial agents in various inflammatory diseases has proved beneficial in the past, it is only recently that the therapeutic anti-inflammatory potential of cyclines and macrolides has received attention worldwide. " NCBI article

Titers are not conclusive for or against PANDAS. My daughter is definite PANDAS and her titers were ASO 6 and Anti-DNASE 95 three months into an exacerbation. She had strep for I have no idea how long (no symptoms) prior to the titer testing and for at least 8 weeks post titer testing. Her pedi had never heard of PANDAS, but they are believers now that they have seen such dramatic improvements in my daughter.

During the height of my DD illness she told me in a firm voice numerous times--Don't make me feel better. If I was doing research or reading, she would try to stop me and tell me she did not want to feel better. She even told her pedi not to make her feel better. With her having autism, I tried to figure out the reasoning for this wording and decided maybe it was a sign of depression. I will never know as she is expressively delayed. I relate to the heart break as it made me want to cry to think she wanted to or thought she deserved to feel this badly.

Do you need to live in CA to sign it?

Stephanie, I figured out the link problem by copying one of you links from another of your posts. Looking it over now. Thanks

Thanks for the input everyone. The OLE is not here yet, but we are going back on probiotics today as sweetie's sleep is all over the place and she gets up at 2:30-3am sometimes wanting to play. Likely not PANDAS related since she has done this off and on all her life and probiotics helped in the past to regulate her sleep a little more (I am thinking yeast imbalance in the gut affecting serotonin.) Thanks for the articles Haileysmom. I may try Seagate for next time . Stephanie, I tried to go to the web page you sited and the server cannot be found. Is their another or new addy I can try?

I am going with the 30% this time and we will see how it goes.

Well, so far I have read anecdotal both ways. The medical research shows no contraindications with abx. It appears the original train against concomitant use was since Olive leaf kills mold, and mold is one of the foundations for some abx, then the Olive leaf may "kill" the abx, but most current abx are so distant from their mold foundations the concern is unfounded. The ingredient that seems to matter the most is the % of Oleuropein. I have seen as high as 30% (Olive Leaf Plus with 30% Oleuropein ) I am not sure if I am going to get that one of the 22% (60mg) by the same company. Still researching this morning *yawn*. If I come up with anything different, I will let you know. Thanks for the responses .

Is anyone giving both? I am off to look up contraindications, but I figured someone here already knew . Sweetie is still doing pretty well, but we are having some VERY minor set backs that I would probably not normally notice or associate with a set back if she did not have PANDAS. I am just wondering if adding OLE to her zith 250 would help any? I hope to get her off abx completely but would want something else to fill the gap for a time anyway.

Congrats!! I know when my sweetie started feeling better, just watching her play independently outside and laughing made me cry (and I am not a crier ). May any back slides be minor or none at all. We have only had very minor quirks occur (knocks on wood) since our progress began. May you be this fortunate

Thanks to all for sharing. I am brand specific on a few things, but much less for items I take than kiddo.

Here is the NIMH link: My link And another NIMH article: My link Here is one from the OCD foundation (I believe this is the first article I gave my DD pedi): My link I will post more links in a little while, have to get kiddo to bed right now This one was CME (continuing education) for physicians/pharmacists through Medscape (I have to cut and paste the whole thing because if you do not have a medical account, you do not have access to them, sorry): Education From Medscape Psychiatry PANDAS in Children -- Current Approaches Faculty and Disclosures CME/CE Information Introduction Postinfectious autoimmune disorders in response to Streptococcus infections were confirmed in the 1950s.[1] Rheumatic fever (RF) was the prototype disorder and Sydenham chorea (SC) was identified, not only as a criteria for the diagnosis of RF but also as a stand-alone manifestation of the potential for a central nervous system autoimmune response. SC can have a mix of both motor and psychiatric manifestations, including hyperactivity, mood lability and, in severe cases, psychosis. Behavioral symptoms often precede the motor manifestations and can include obsessive-compulsive features. On average, SC lasts about 6 months.[2] Defining the PANDAS Subgroup Swedo and colleagues[3] first proposed that some cases of childhood-onset obsessive-compulsive disorder (OCD) might be, like SC, a post-step disorder of immune character. They coined the acronym PANDAS to identify the occurrence of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. This is a disorder of prepubertal children with sudden and dramatic onset of OCD post-streptococcal infection. Dr. Susan Swedo,[4] from the Pediatric Developmental and Neuropsychiatry branch of the National Institute of Mental Health (NIMH), presented that these children have a remarkably episodic course with remitting and relapsing OCD symptom severity. Her criteria for a PANDAS presentation also require the presence of associated neurologic problems. These are usually "choreiform" movements, which, by definition, are not full-blown SC. In fact, these are often subtle movements. They do not interfere with voluntary motor control and may only be elicited with careful observation of the extended hand/fingers. Such movements were present in 25 of 26 children seen during an exacerbation of their OCD symptoms in the early studies at NIMH.[5] The exacerbations must also have a temporal relationship to repeated Group A beta-hemolytic Streptococcus (GABHS) infections. Dr. Swedo reported that there was an initial sense by clinicians that a larger spectrum of psychiatric disorders (eg, attention deficit/hyperactivity disorder, autism, anorexia nervosa) might also be placed under the PANDAS rubric. However, she feels strongly that this subgroup classification should be reserved, at this time, for OCD and tic disorders. The full Diagnostic and Statistical Manual of Mental Disorders, 4th edition[6] criteria for these disorders must be met before PANDAS should even be considered. Current thinking, according to Dr. Swedo, does allow for "possible" PANDAS to be considered if there is a child with a prepubertal onset relapsing/remitting OCD and/or tic disorder. This is true only if the neurologic problems and relationships to GABHS infections have not been fully explored or documented. She feels that knowledge of the PANDAS associations must encourage clinicians to search for the "missing" criterion with each exacerbation. Thus, the pursuit of laboratory confirmation of the GABHS infection should be undertaken. Dr. Harry Hill,[7] Infectious Disease specialist and Streptococcus researcher at the University of Utah School of Medicine, reported that the current "rapid" streptococcal screens used in most clinics are perfectly acceptable for proving the presence of the Streptococcus if positive. However, if the rapid screen is negative, this is not a true indication of the absence of infection. A full plate culture needs to be done. Retrospective assessment of exposure to Streptococcus will require the use of immune markers (eg, AntiStreptolysin O [ASO], Anti-Dnase-. It should be recognized that the ASO titer is not elevated at the time of acute infection. It is an antibody response peaking in 2-4 weeks. An elevated level can last for 6-12 months before, barring reinfection or other complications, it returns to baseline. Criteria for true diagnostic titers require both acute and convalescent specimens. Diagnostic levels (reported in Todd units) can vary among labs and are age-dependent. Anti-Dnase-B (also known as Streptodornase) is less discriminating (20% of the healthy population have elevated levels). Since these titers rise more slowly and remain elevated longer, they may be helpful in some cases. Franciosi stated that paired titers showing a 4-fold rise should be considered positive.[8] He also noted that combined testing, using both tests along with the Antihyaluronidase titer as a Streptococcus "panel," is reported to be 90% confirmatory of a Streptococcus infection. Genetic Risks? There does appear to be a genetic susceptibility to poststreptococcal autoimmune disorders, including RF and SC. Previous research focused on the D8/17 antibody. This monoclonal antibody identifies B-cell antigens present in all patients with RF, where it has been studied extensively.[9] Dr. Tanya Murphy, of the University of Florida, noted that, unfortunately, it has been found to be rather nonspecific in neuropsychiatric disorders. In addition, she and Dr. Hill[7] both considered the reliability and validity of the assay to be suspect. The lack of usefulness of this laboratory marker for any diagnostic purpose in suspected childhood PANDAS was reinforced by Dr. William McMahon.[10] Therefore, currently, it seems to have no place in the assessment of PANDAS in children. Dr. McMahon, Child Psychiatrist and Geneticist at the University of Utah, studied the broader area of general familial genetic risk. He looked for the presence of OCD and tic disorders in families involved in the current RF resurgence in his region. (Dr. Hill[7] reminded clinicians that the incidence of RF was in significant decline through the mid-1980s but is now more prevalent in some areas [eg, intermountain region of the western United States] for reasons that are poorly understood.) His goal was to see if Tourette disorder (TD) or OCD was associated with the SC criteria for RF. In a pilot survey of 100 families, he found almost 4 times as many SC probands (22%) had relatives with TD/tics or OCD than non-SC RF patients (6%). He feels this supported an as yet unidentified "common genetic risk factor." This should prompt clinicians to be careful about the family history of children who are suspected of PANDAS. PANDAS -- Management and Treatment The recent report by Murphy and Pichichero[12] is the first evidence that it may be possible to identify children with potential PANDAS more acutely. This report, from a vigilant pediatric practice, identified 12 children with new-onset PANDAS-like presentation over 3 years. All had GABHS infection, sometimes mild in classical (ie, tonsillitis/pharyngitis) presentation, with abrupt appearance of OCD symptoms. (Intriguingly, in this study, there was also the new onset of daytime urinary urgency/frequency in 7 of 12 patients.) If antibiotic treatment was successful in eradicating the streptococcal infection, the OCD symptoms also resolved. Recurrence of OCD symptoms, with recurrent GABHS infection, was found in 6 of 12 children. Appropriate treatment again relieved the OCD symptoms if the infection was managed. Given the success of antibiotic treatment in the prevention of 90% of RF and 50% of acute poststreptococcal glomerulonephritis, this study supports the vigorous inquiry and treatment of GABHS infections as a potential prevention effort of PANDAS as well.[7] Treatment for the PANDAS subgroup of children with OCD is not different from treatment for others with this diagnosis. Dr. Murphy recommended the use of combined behavioral therapies and low doses of selective serotonin reuptake inhibitors (SSRIs) with rapid taper to clinically effective levels as reported in the literature.[9,11] Controversies arise when treatment is less than ameliorating or if the exacerbations are problematic. Perlmutter and colleagues[13] have published the results of their attempts at immunomodulatory therapy with more severe and treatment resistant children with PANDAS. Part of the NIMH group studying these disorders, they found that both intravenous pooled immunoglobulin (IVIG) and plasma exchange (PE) were successful in reducing OCD and other behavioral symptoms. Gains were maintained for up to 12 months. PE was reported to produce more rapid onset of change (< 2 weeks) and had "more striking" improvements in OCD.[5] Given the complications/risks of IVIG, this is not recommended currently by Dr. Swedo as a treatment. She agreed with the NIMH statement[14] that this is an experimental intervention. Dr. Swedo did report that she feels that children with more severe symptoms should be considered for therapeutic plasma exchange if other interventions have failed and there is a clinical exchange team available who has experience with young children.[4] She indicated that families need to know this is an area of ongoing research and that PE and other modalities for treatment are under continuing study at NIMH. An active question in that research is the effect of prophylactic antibiotics (PAbx) in children with PANDAS. This is another difficult area for clinicians. PAbx are routine for those with carditis resulting from RF, and their success in prevention of further heart damage is a clear indicator of the relationship between GABHS and RF. Early studies[15] of PAbx in children with PANDAS have been complicated by poor compliance and the dilemmas of placebo treatment. Since study children will be at risk for GABHS infections through the study period, ethically they require treatment. Dr. Swedo presented early indications of clinical directions from unpublished data[4] but felt it was "too early" to recommend this. Her strongest concern was how long to continue antibiotics if they are started. This and other unanswered questions will continue to guide the study of PANDAS. Finally, the question of how much of "typical" OCD may have its genesis in postinfectious etiology is a tantalizing one. Given the interest of psychiatry and child psychiatry in finding clear etiologies for many disorders, the possibilities of viral and bacterial contributions to currently poorly understood disorders and their exacerbations make the evolving PANDAS story a model for all clinicians to watch. Clinical Correlation An 8-year-old girl presents to her MD's office with sudden onset of frequent hand washing with distress about "germs"; she has a sore throat. Mother is known to have struggled with OCD and dad has a tic disorder. Mom is anxious about PANDAS! The patient should be screened with a "rapid" strep test: if positive, she should be treated with appropriate antibiotics; if negative, a plate culture should be done. In either case, the family should be counseled about appropriate behavioral approaches to the girl's obsessive-compulsive symptoms. If mother has a cognitive-behavioral therapist in place, a contact to that clinician is appropriate. Appropriate follow-up of culture, treatment to resolution of any infection, and tracking of OCD symptoms is indicated. Four weeks later, the girl is more significantly involved with obsessions and compulsions about germs. Contamination fears interfere with comfort at school and home. Cognitive-behavioral therapy principles have been initiated with some success. Mother has benefited from fluvoxamine and feels her daughter will also. Referral to a clinician skilled with the diagnosis and SSRI treatment of OCD in children is appropriate, and formal cognitive-behavioral therapy must be considered. Six weeks later, she has multiple severe obsessive-compulsive anxieties and evidence of "psychotic" beliefs. She is sleeping poorly and eating is constricted due to her fears. After diagnosis of OCD, there was initial positive response to the medication/therapy trial, but this recently deteriorated. The patient should be cultured again, and treated as appropriate. If positive, a search for a Streptococcus "carrier" in the family should be made. If negative, therapeutic plasma exchange might be considered. Consultation to the PANDAS group at NIMH, or other local experts, about this treatment and the potential usefulness of prophylactic antibiotics should be sought. References Berrios X, del Campo E, Guzman B, Bisno AL. Discontinuing rheumatic fever prophylaxis in selected adolescents and young adults. A prospective study. Ann Intern Med. 1993;118:401-406. Murphy T, Goodman W. Genetics of childhood disorders: XXXIV. Autoimmune disorders, part 7: D8/17 reactivity as an immunological marker of susceptibility to neuropsychiatric disorders. J Am Acad Child Adolesc Psychiatry. 2002;41:98-100. Swedo S, Leonard HL, Garvey M, et al. Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection: clinical descriptions of the first 50 cases. Am J Psychiatry. 1998;155:264-271. Swedo S. Pediatric autoimmune neuropsychiatric disorders associated with strep infections (PANDAS). Program and abstracts of the American Academy of Child and Adolescent Psychiatry 49th Annual Meeting; October 22-27, 2002; San Francisco, California. Symposium 26. Swedo SE. Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS). Mol Psychiatry. 2002;7(suppl 2):S24-25. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, fourth edition. Washington, DC: American Psychiatric Association; 1994. Hill H. Group A streptococcal infections and the pathogenesis of acute rheumatic fever. Program and abstracts of the American Academy of Child and Adolescent Psychiatry 49th Annual Meeting; October 22-27, 2002; San Francisco, California. Symposium 26. Franciosi R. Laboratory Services Directory -- Vol. 2, Children's Hospital of Wisconsin. Hudson, Oh: Lexi-Comp Inc; 1992. Murphy T. Tics, compulsions and strep throat. Program and abstracts of the American Academy of Child and Adolescent Psychiatry 49th Annual Meeting; October 22-27, 2002; San Francisco, California. Institute 1. McMahon W. Genetics of TD and RF: do they overlap? Program and abstracts of the American Academy of Child and Adolescent Psychiatry 49th Annual Meeting; October 22-27, 2002; San Francisco, California. Symposium 26. Riddle M, Reeve EA, Yaryura-Tobias JA, et al. Fluvoxamine for children and adolescents with obsessive-compulsive disorder; a randomized, controlled, multicenter trial. J Am Acad Child Adolesc Psychiatry. 2001;40:222-229. Murphy M, Pichichero M. Prospective identification and treatment of children with pediatric autoimmune neuropsychiatric disorder associated with group A streptococcal infection (PANDAS). Arch Pediatr Adolesc Med. 2002;156:356-361. Perlmutter S, Leitman SF, Garvey MA, et al. Therapeutic plasma exchange and intravenous immunoglobin for obsessive-compulsive disorder and tic disorders in childhood. Lancet. 1999;354:1153-1158. Plasma exchange and intravenous immunoglobin lack proven benefit and carry risk for children with PANDAS, Tourette's syndrome, or OCD. Available at http://www.nimh.nih.gov/events/pandaalert.cfm. Accessed November 15, 2002. Garvey MA, Perlmutter SJ, Allen AJ, et al. A pilot study of penicillin prophylaxis for neuropsychiatic exacerbations triggered by streptococcal infections. Biol Psychiatry. 1999;45:1564-1571.

I use Iherb.com (usually check with ebay, amazon and google shop sometimes) right now, but wanted know who everyone else uses so maybe I can compare prices . I live in a small town (3000 people) almost an hour and half from true a big town so online works best for me. Our town has an herbal supplement shoppe, but it charges about twice as much as Iherb for everything I have priced. Thanks .

I want to say thanks for the site, though I suspect my kiddos autism is caused by her Arnold Chiari I which was caused by a birth trauma--I still search for something "concrete" that may help her in her life. I will read it over and see if anything there can help us, so sincerely thanks .

Keep a log during his entire antibiotic therapy of any improvements or worsening symptoms. I noted night time, food, and restroom behaviours along with attitude towards going outside and general mood. Pick your key symptoms and follow them daily with a log you and the doc can look back over. I also logged if I had given her Ibuprofen or not so we could relate that to her behaviours. I did not really begin to see any steady improvements in DD until around ten days. Her abx is like this: Amox 500 two times a day x 10 days, Saw improvements on day 6-7 then lost them on days 8-10 (how I knew she was going to still be strep +). Augmentin 1050mg two times a day x 10 days (saw minor improvements on about day ten, then no further improvements until day 6 on zithromax. Still strep + after the augmentin. Zithromax 250mg daily for 5 days, no major improvements but no ground lost. Still strep +. Zithromax 250mg daily for 30 days and improvements were slow but steady. She was strep - after this. We are still on the Zithromax now and will be for the next month then I will try titrating her down. I was fortunate in that her pedi has been very helpful despite never having heard of PANDAS until I came in and requested blood work. Now they are definitely believers after closely following my DD and seeing her improvements. Initially, the office felt no need to even retest her and they were reluctant to schedule the appointment for the retest after the 10 days of amoxicillin. Now, they are conferring with me about her course of therapy rather than just deciding on their own what they feel is best, since I have proven well read on the subject. On the first visit, I took a typed list of all the personality changes I had seen since our journey began and PANDAS articles from NIMH, Medscape, etc. Then I took in the logs of behaviour changes on the second visit. I always took in articles from medically approved (not anecdotal if at all possible) sources as reference for what I was saying or requesting. I hope you see improvements soon.

Sorry short on time, but I wanted to post. My DD has autism and PANDAS as well. She tested positive for strep on 1-5-12 (not sure how long she had it.) She continued to retest positive until 2-29. She was on several abx, but did not clear until she had been on Zithromax for 5 weeks straight at "severe pharyngitis dosage" (250mg/day every day for a 50lb child). DD has had six visits and six tests since 1-5 , but she is almost back to 100% herself at this time and we are going to try to start titrating off abx one month from now. Here is my first post with DD history in case you want to see if any of sounds familiar My link

I have not tried it, but here is some information I found: http://qualitycounts.com/fpwobenzym.html http://www.ehow.com/about_5743711_problems-wobenzym-n.html Wobenzym is mentioned by FDA--they warned mfg about their marketing claims: http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2010/ucm229214.htm Here is a good site with a few drug interactions to avoid if you try this one (abx are mentioned in that this may cause abx have higher absorption leading to higher blood levels): http://www.livestrong.com/article/502814-wobenzym-n-side-effects/ Here are two pubmed articles about a studies of the key components in Wobenzym (I did not read it): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC538506/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2249734/?tool=pmcentrez If I find anymore I will let you know. If you try it and it works well for you, please let us know .

My kiddo has not learned to whistle yet, but she made a whaling, hollering sound all the time and completely stopped talking for almost three months. Since she could not seem to control the hollering, I decided it must be a vocal tic. Kids rage for a reason usually. We may never know what the reason was, but I suspect they are overwhelmed by something--thoughts, frustrations, sensory overload etc..... Whatever is bothering them is something they believe they cannot control and frequently cannot verbalize well so it builds and builds until we see the rage. JMO though

Peroxide is a good cleaning agent as opposed to bleach. It is more environmentally friendly and still disinfects as well. http://www.google.com/#hl=en&sugexp=frgbld&gs_nf=1&cp=11&gs_id=1r&xhr=t&q=Peroxide+vs+bleach&pf=p&sclient=psy-ab&oq=Peroxide+vs&aq=&aqi=&aql=&gs_l=&pbx=1&bav=on.2,or.r_gc.r_pw.r_qf.,cf.osb&fp=61ced53140c9a9e9&biw=1024&bih=605