Sheila

Hi All-- Our last subscription issue of Latitudes Online had a touching and informative account on PANDAS parent. It describes a family's experience of trying to find help for their daughter and finally meeting with success. A publication in England, Foods Matter, contacted us for permission to post it on their site in the near future, and circulate it in their next newsletter. I know Buster already posted on this but I wanted to mention how grateful we are to him for sharing his family's struggle, and know that it will help many others around the world. Please pass the link on to spread the word about PANDAS. Sheila http://www.foodsmatter.com/asd_autism/miscellaneous/articles/pandas.html

Hi Melanie-- I saw Chemar's post and agree that there's a line between members sharing what helped, and giving someone direct advice on changing prescription medication doses, whether less or more. As we all know, there's so many factors that have to be considered in complicated medical cases. I know everyone has only the best intent. Also, I'd like to suggest (as I do in most cases ) that you look back and consider anything that might have triggered a reaction. Brain inflammation resulting in an increase in symptoms of OCD, ADHD, tics, anxiety, mood swings, etc can be caused by many things beyond a bacterial or viral infection. For example, if I read it correctly, Danny had a birthday party a few days ago (30th). Using this line of reasoning, you and your husband could think back and recollect if he ate anything that he might have reacted to (artificial flavors, colors, sugars, etc or other foods he could be sensitive to); was he exposed to fragrances or other agents that might have had aggravating chemicals in them? outdoor allergens that have come into bloom or pets he's not usually around? swimming in a chlorinated pool? These are just random ideas, I'm not suggesting they are issues for Danny as I don't know anything about your family's history of allergy or chemical sensitivity, but a general comment is that as parents it's always good to be looking for possible triggering events, as these can make any underlying infection worse. So just throwing those ideas out, and hoping things get better through the week! Sheila

Hi--we wish we were having another one this year but unfortunately we're not. We'll have to keep our options open. Maybe we can partner with another organization later in the year. If anyone has some ideas on this topic, please let us know. Thanks for your interest! Sheila

Pandas_Chicago, we have a policy that when administrators feel a need to delete or edit posts, those actions are not to be rehashed on the forum. The guidelines on this are posted. You are welcome to send a PM to me on the topic, which you did, and to which I replied and explained as best and truthfully as I could. For this reason, I deleted part of your post here. I understand if you wish to leave the forum, and I know I join with many others in wishing you well and being grateful for the help you have given, even after your own child was. thankfully, cured. Sheila

I'm going to close this thread because it is often not helpful to have parents speak publically on behalf of different doctors' clinical approaches, as they may change from patient to patient or over time. Further, parents are often not fully aware of the facts. Ideally the doctors would have their own websites that give details and explain their approaches. We've been doing great with keeping the tone positive and I've had lots of comments in appreciation of that. Let's all stay on that track! Thanks, Sheila

Hi May--We've heard from many families who have found that a range of approaches that support immune function were helpful when used as an integrative therapy for PANDAS. (Am not suggesting we have information on their use in the case of a PANDAS crisis without standard therapy for strep.) This can include avoidance of aggravating substances (whether in the environment or through food or medications they are sensitive to), or the addition of something they may need more of, for example select nutrients. These families also had used antibiotics, if not other PANDAS therapies, to address the strep infection. Specialized allergy treatment can also be beneficial. Our book Natural Treatments for Tics and Tourettes outlines many of the methods being used by families and physicians to treat tic disorders and OCD without standard medication. It's important that PANDAS parents look at a number of factors to find out why their child may be having an increase in tics or OCD behaviors at any given time. Sometimes they may be unaware of allergens that are aggravating the nervous system or weakening the immune system, making symptoms worse than they might otherwise be or making someone more susceptible to infection. We have information on our website on identifying triggers for TS that some PANDAS parents have found useful to consider. Letters from families on tics and related behaviors are also linked below. Each case, of course, can be different so there's not a one size fits all answer. But that doesn't mean there aren't answers to be found. http://www.latitudes.org/articles/finding_triggers.htm http://www.latitudes.org/articles/letters_...ts_families.htm I hope you find what you are searching for. Best wishes, Sheila

We can see why you feel discouraged, but hang in there! You have symptoms that do not seem limited to a PANDAS diagnosis, so you shouldn't feel like all the doors are closed. Here's someone who you might want to consider for a consultation: Dr Michael Schachter is here in Suffern, NY--not far from you. You'll see on his site that he is a psychiatrist and nutritionist, and the author of a book on depression. He uses an integrative approach and would seek to determine what underlying medical conditions may be the basis for your problems. I don't know how much of his work would be covered by insurance or what your situation is in that regard--but it might be a good place to start in figuring out just what is going on. I don't have any special connection/relationship with him (though I once interviewed him, he is very bright) and can't make any promises of course. . . but he's someone to think about along with other ideas that come in. Sending good wishes your way, Sheila

Patty, sorry for the delay in responding to this. By all means, foods can trigger OCD symptoms, as can environmental allergies. It depends on the individual case; one has to explore what maybe aggravating the central nervous system, or affecting the immune system and causing inflammation in the brain. We have had reports of milk and/or other foods as well as chemical exposures -- such as chlorine, new carpeting, cleaning products--causing OCD symptoms to flare. Even if there is an underlying infection or other significant cause for symptoms, environmental factors can add to the total response. Some people report symptoms are worse during allergy seasons. There is no one diet for everyone. Have you seen our book Natural Treatments for Tics and Tourettes? It covers ways to determine food sensitivities and other triggers that apply to OCD as well as for tics. Hope that helps! Sheila

Let's send private messages to Alderliefest on this topic; it's probably the best way to help, since there are so many possibilities. . .

Hi Alderliefest-- We're sorry anytime someone isn't getting the medical help they need. I hope you'll receive some messages from people, offering you helpful advice. This is a post of mine from last week on this topic: http://www.latitudes.org/forums/index.php?...amp;#entry63080 Don't ever feel that any doctor is your "only hope!" I think you'll find that many members here who found success have been to more than one physician in search of answers to their particular case. Of course this is not what anyone wishes for, given the time and cost involved, etc. But please don't lose heart. Wishing you all the best, Sheila

Hi Pam--This is a list by state that members have posted: http://www.latitudes.org/forums/index.php?showtopic=6428 and here's a lot of similar information in a different form: http://www.latitudes.org/forums/index.php?showtopic=5023 You have to take some time to find your way through the list and make your own decisions. Finding physicians for the evolving field of PANDAS is challenging, and many doctors on this list use different approaches or have varying specialties. Needless to say, none of the members posting nor our forum/ACN can be responsible for the outcome when patients go to these doctors. Everyone posting physician information is just trying to share what they know in the hopes it will be helpful to someone else. We have no way to follow up with these posts to get input from others. And of course what works for one one patient may not be the answer for another. With all that said, I certainly hope you find the lists helpful and that you can locate a wonderful physician. Sheila

thanks a lot dut and Vickie--will add those in.

Hi Shirley--I've been reading your posts. Please watch for a private message from me, OK? Am just doing that to simplify our communication. . . Sheila

Hi All -- We've pinned a list -- Hope you can please check it out when you have a chance and let us know what you think we missed. Thanks! Sheila

We hope this list helps you navigate our forum. Terms you may come across in posts are in ABC order, grouped by Family, Internet Terms, and Other. If you're new here, don’t worry—it won’t take you long to catch on. We promise. (And don’t feel you have to use them yourself! ) General note—it doesn’t matter if abbreviations are lower case or capitals, so they're shown as a mix here. Family A number may be added for age, such as: dd8 bil - brother in law dd - dear daughter dh - dear husband ds - dear son dw - dear wife fil - father in law mil - mother in law sil - sister in law (or son in law) SO - significant other Internet terms BTW - by the way IM - instant message IMHO - in my humble opinion IMO - in my opinion LMK - let me know ITM - in the meantime LOL - laugh out loud LYK - let you know PM – a private message sent on forum Other abx - antibiotics ad - antidepressant AED - anti epileptic drug amox - amoxiccillin AN - Anorexia Nervosa AS - Aspergers syndrome ASO - antistreptolysin O BID - 2 times a day BP - bipolar (can also mean blood pressure) CaMK or CaM - CaM Kinase II CFS - chronic fatigue syndrome CR - controlled release medication DAN - Defeat Autism Now! movement DAN doctor - practitioner using protocols from the DAN movement Dr B - Dr Bouboulis Dr K - Dr. Kovacevic Dr L - Dr Latimer Dr T - Dr Triffileti dx - diagnosis EBV - Epstein Barr virus ER - extended release medication fibro - fibromyalgia FMS - fibromyalgia GABHS - Group A Beta-Hemolytic Streptococci throat culture GAS - group A streptococcus bacterium gp - general practitioner GS - gluten sensitivity h/o - history of hx - history IBS - irritable bowel syndrome IR - immediate release medication IVIG - intravenous immunoglobulin therapy MS - multiple sclerosis Neuro - neurologist NP - naturopath OCD - obsessive compulsive disorder ODD - oppositional defiance disorder OTC - available over the counter (no prescription needed) PANDAS - Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections PCP - primary care physician PDD NOS - Pervasive Developmental Disorder - Not Otherwise Specified pen - penicillin pen VK - penicillin VK PEX - plasma exchange therapy PITAND - Pediatric Infection-triggered Autoimmune Neuropsychiatric Disorders Pm - pain management (or pain monster, or private message) PN - peripheral neuropathy PRN - taken as needed, for medication pt - patient PT - physical therapy q4h - medication to be taken every 4 hours; adjusted for 6, 8, 12 hours etc. QID - 4 times a day RF - rheumatic fever rx prescription SC - Sydenham chorea; also called St Vitus Dance SID - sensory integration dysfunction SR - sustained release SSRI - selective-serotonin reuptake inhibitor; type of antidepressant drug TID - 3 times a day TS - Tourette syndrome tx - treatment ULN – upper limits of normal URI - upper respiratory infection UTI - urinary tract infection zith - zithromax antibiotic

Thank you for starting this thread, Parents4eyes, and sorry for the confusion. Abbreviations can be difficult for newbies, but please be patient--you will quickly get used to them. I've been planning to pin a list for new people but never got around to it. Maybe we should also add the names of Drs: Dr B, Dr L etc. Would everyone please think about any other terms you think need to be on the list and we will get it pinned? Thanks! Sheila

Hi Everyone-- There's been some discussion over the last few days about difficulties in contacting a particular physician. On these forums we try to avoid having public discussions that can be open to misinterpretation or cast someone in an exceptionally negative light --regardless of who that person is. For this reason I have deleted the recent threads about this doctor. It is not our responsibility to provide contact information for doctors here, nor explanations for physician behavior. This is their own responsibility, outside the ACN forum. For the record, ACN does not endorse--or openly oppose--any physician or researcher associated with PANDAS or other related conditions. It's clear some of you have been frustrated and I hope you can get the information you need to resolve your problems, through PM with other members or contact with the doctor directly. Thanks very much for your understanding on this issue, Sheila

Hi Emmalily-- I know you're pretty new to our site (we're glad you're here!) and you may not be aware of our posted guidelines. One is that this forum can't be used for the purpose of starting a separate forum or directing people to other forums. This forum already includes parents with teens, as well as adults with PANDAS. But, I can see that teens themselves might want their own way to communicate together. I'd like to suggest that the best way for you to connect with others on your plan for a teen facebook etc. is through private message. OK? I'm leaving the posts below for a bit so you know who responded, and you can contact them through PM. Then at some point this thread will be deleted, as I have to use the same policy for everyone. This is nothing personal at all, it's just standard forum policy. I hope you understand! Thanks very much--Sheila

Hi--I'm so sorry you and your family have been through so much with this situation. Regarding your daughter's hair pulling, please see research below on an amino acid supplement that helped 56% of the patients with trichotillomania. You are dealing with a complex case, and the underlying causes, beyond emotional issues, can range from a combination of viral or bacterial infection, environmental factors (diet, allergy, chemical exposures, reactions to medications), nutritional deficiencies, or other issues affecting her brain balance and central nervous system functioning. To attempt to unravel this--(and there are no guarantees on outcome) you would need a physician who is skilled in assesing biological causes, beyond typical psychiatric approaches. This is called a "biomedical" approach. If this is something you are in a position to explore and have an inclination toward, we can discuss this further. Believe it or not, some people have found their OCD linked to a single food item, such as dairy, and rages linked to a deficiency in something as basic as essential fatty acids. I'm not suggesting this is the case for your daughter, and often an answer is more complex, but without looking for possibilities one simply never knows. I sure wish you all the best in finding the help you need. Sheila Arch Gen Psychiatry. 2009 Jul;66(7):756-63. N-acetylcysteine, a glutamate modulator, in the treatment of trichotillomania: a double-blind, placebo-controlled study. CONTEXT: Trichotillomania is characterized by repetitive hair pulling that causes noticeable hair loss. Data on the pharmacologic treatment of trichotillomania are limited to conflicting studies of serotonergic medications. N-acetylcysteine, an amino acid, seems to restore the extracellular glutamate concentration in the nucleus accumbens and, therefore, offers promise in the reduction of compulsive behavior. OBJECTIVE: To determine the efficacy and tolerability of N-acetylcysteine in adults with trichotillomania. DESIGN: Twelve-week, double-blind, placebo-controlled trial. SETTING: Ambulatory care center. PATIENTS: Fifty individuals with trichotillomania (45 women and 5 men; mean [sD] age, 34.3 [12.1] years). INTERVENTIONS: N-acetylcysteine (dosing range, 1200-2400 mg/d) or placebo was administered for 12 weeks. MAIN OUTCOME MEASURES: Patients were assessed using the Massachusetts General Hospital Hair Pulling Scale, the Clinical Global Impression scale, the Psychiatric Institute Trichotillomania Scale, and measures of depression, anxiety, and psychosocial functioning. Outcomes were examined using analysis of variance modeling analyses and linear regression in an intention-to-treat population. RESULTS: Patients assigned to receive N-acetylcysteine had significantly greater reductions in hair-pulling symptoms as measured using the Massachusetts General Hospital Hair Pulling Scale (P < .001) and the Psychiatric Institute Trichotillomania Scale (P = .001). Fifty-six percent of patients "much or very much improved" with N-acetylcysteine use compared with 16% taking placebo (P = .003). Significant improvement was initially noted after 9 weeks of treatment. CONCLUSIONS: This study, the first to our knowledge that examines the efficacy of a glutamatergic agent in the treatment of trichotillomania, found that N-acetylcysteine demonstrated statistically significant reductions in trichotillomania symptoms. No adverse events occurred in the N-acetylcysteine group, and N-acetylcysteine was well tolerated. Pharmacologic modulation of the glutamate system may prove to be useful in the control of a range of compulsive behaviors. LINK: http://www.ncbi.nlm.nih.gov/pubmed/19581567

Hi ksy--I doubt someone would post the items on the internet out of copyright concerns. At least they shouldn't. You probably have this basic information for ordering sets: http://psychcorp.pearsonassessments.com/HA...mp;Mode=summary

So as another hypothesis, your thought is that maybe because the herxing is bad or more so for pand/pits that maybe the protocoal was stopped early and there still might be a benefit in the long haul. But because conditons worsened, it could have only been temporary set back, and if they were able to push threw? It seems it's a possibility, Fixit. But as SmartyJones says, it's always a tough call for parents to make as to what is happening when symptoms increase. HBOT is often used by mainstream medicine for strep infections (and other bacterial inflammation) in extremeties. Several reports support its use for making antibiotics more effective. While I saw one study that questioned its effectiveness, I haven't seen any that suggest it makes strep worse. Still, I'm no expert on it--so I'll see if I can find out more about this.

We were contacted by a casting agent for A&E who is looking for people for the 2nd season of a show on OCD called "Obsessed." This is a link to info on their OCD show last year: http://www.aetv.com/news/?id=443346 (The two people highlighted clearly had very severe symptoms.) You could expect Season 2 to be similar. Those on the show are offered 15 weeks of cognitive behavior therapy at no cost, and the show tracks progress with this treatment. Areas involved are Chicago, Los Angeles or San Francisco. We have no association with this program and are not encouraging participation. We are simply passing the information on because CBT is an effective approach to some cases of OCD. However, anyone on the program needs to be OK with having very personal behavior shown on TV and presented in an extreme light. Those interested should write to Melanie at Mhallidencasting@gmail.com

Here’s a good resource on hyperbaric oxygen therapy; it includes info on its use for autism: http://www.healing-arts.org/children/hyper...py_Introduction It is recommended by some for Lyme, based in great part on work by Dr. William Fife at Texas A & M University (now retired). He developed the protocol that is often used for Lyme and reports a high rate of significant improvement. This is the only study article I've seen by him, and it appears to be preliminary--if someone finds additional articles, please post them: http://hbotoday.com/treatment/clinical/res...ctsonlyme.shtml Note that Dr Fife reported: “All except one of the 91 subjects developed severe Jarisch-Herxheimer reaction [symptoms getting worse before better] usually appearing within the first 5 days of the beginning of hyperbaric oxygen treatment. In most cases, the Jarisch-Herxheimer reaction continued throughout the series of treatments, and in many instances continued for up to a month after the treatments were finished. (Italics mine) In EAMom's post above, she gives a previous thread that includes a post by Ratlehum indicating that a DAN doctor did not recommend HBOT for PANDAS, saying that strep is an “aerobic bacteria and thrives in high oxygen environments.” Might there also be a herx reaction when PANDAS/PITAND kids try HBOT? Is it possible to avoid an increase in symptoms if a more gentle protocol is used? I don’t have the answers to these questions. But if someone wishes to pursue HBOT it seems it would be important to find a highly qualified and experienced practitioner for protocol development and monitoring.

That's a good question, Vickie--and this is the change that will probably take the most patience to adapt to. Announcements include any notification of upcoming outside events, fundraisers, media requests, new organizations, etc. The purpose is to avoid spammers and scammers from making announcements, and also to prevent misunderstandings in case there is a conflict regarding the nonprofit/nonprofessional status of ACN. It also allows a chance to make sure that the event, broadcast, etc announcement is legit and accurate. We also want to prevent researchers from announcing their participant solicitation without it being checked out first. Same goes for media solicitation annoucements. We've had cases where producers want to "use" our families yet don't offer good protection for them, or their message is not in keeping with our mission. Further, we want to be sure that a single source or organization doesn't "over announce" frequent events or simply use us as an easy advertising source. Also, some individual's announcements are designed for self-promotion only, and these need to be avoided. If current users could please send announcements (for a DAN! or AutismOne conference, for example) they will receive an approval to post it right away. But to be fair in getting this started, we'd like that initial message sent for approval first. I know this is an extra step for those of you who post responsibly (and that is most of you!); hopefully it won't be too cumbersome. We wish these types of interventions weren't necessary, but they are. Let's see how it goes, OK? We are open to ideas to make sure it goes smoothly. Thanks, Vickie.--Sheila

Hi--Note that yesterday our webmaster posted two pinned articles at the top of this page. Disclaimer and Privacy Policy: http://www.latitudes.org/forums/index.php?showtopic=7461 Forum Community Guidelines: http://www.latitudes.org/forums/index.php?showtopic=7462 Please read them, as they affect your use of these forums. Now that the forums have grown in size, we are adapting standard procedure for moderating them. These guidelines are used by other community forums as well. Just because a forum is free of charge, this does not mean it is a free for all, with users posting whatever they please. We will be working to stay focused on our mission of providing support and education. In a nutshell: Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding. This forum is moderated by our webmaster, by Chemar, and by myself. We can't possibly read every post, and we invite you to alert us by private message if you feel there is inappropriate material. Please see in the policy that as a user: You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. This what moderating a forum is all about; this is standard practice. We don't anticipate having to intervene often, but we will when we need to. We will not be giving public explanations everytime we have to address an issue on the forum. Please also note this new guideline, among others: Announcements, media requests, and research requests These need administrative approval. Please send to an administrator before posting. We have not needed to address this in the past, but now with 4000 members, we request you run announcements, media requests, and research requests by an administrator, webmaster or Chemar (she will forward it on) for approval before posting. Once again, this is standard practice for a forum of our size and nature. Thank you in advance for your cooperation with these changes. Feel free to request clarification on any topics in the articles. Thank you! Sheila