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

Hi--Please note that we have pinned updated material at the top of this page. We request that you review these articles, as they relate to your use of this forum. Please respond with any questions you may have about them. We appreciate your participation in Latitudes' forums and hope you're finding them useful! Thank you, Sheila

Hi--Please note that we have pinned updated material at the top of this page. We request that you review these articles, as they relate to your use of this forum. Please respond with any questions you may have about them. We appreciate your participation in Latitudes' forums and hope you're finding them useful! Thank you, Sheila

Hi--Please note that we have pinned updated material at the top of this page. We request that you review these articles, as they relate to your use of this forum. Please respond with any questions you may have about them. We appreciate your participation in Latitudes' forums and hope you're finding them useful! Thank you, Sheila

Thanks all--and I appreciate your adding the www.pandasresourcenetwork.org website. I hadn't meant to omit that! When Lynn is ready to officially launch the site, we'll pin the URL (and some other resources) so everyone can easily find it. Sheila

Hi Folks-- I cannot keep up with all the messages that have been flooding in on this thread, including from new people who found it upsetting. I deleted it along with a related thread. The deletions are not aimed at any one person. The initial author of this topic simply intended to let people know about Lynn Johnson's appearance on TV with her daughter Lauren, the "sneezing girl." The news segment is here: http://today.msnbc.msn.com/id/35814608/ If people have a problem with these deletions I can only say that I feel it is necessary for the integrity of the forum. We respect the work of all those who are sincerely trying to find help for their own children or other PANDAS families. There are lots of hurdles and difficulties, and the way isn't always clear. But negativity does not help clear the way. In fact, it distracts, discourages, and impedes. If you don't approve of the deletions, I realize you may choose to leave us. However, I would hope that everyone can stay on and work amicably together as they share their insights. Our organization's slogan is "Finding tomorrow's treatments today." That's what we would like to focus on. Thank you for your understanding, Sheila

Hi Forum Friends, I'd like you to know that as director of ACN, I am very pleased to see Lynn and Lauren in the news. (For some reason the program this morning did not air on the Today show in Tulsa. They kept announcing it would come but it didn't! I was glad to watch it on the link provided by a member.) I thought the segment was great. It would be enough if Lynn just told her story and got the PANDAS concept out there to raise awareness. But, she is also bringing supportive and bright physicians to the forefront. This is quite an accomplishment, and seems to be her calling. I'd like to suggest that she has the right to say what she feels comfortable with in the short amount of time given to her, without all of us trying to tell her what to say. I'm sure she is aware of your concerns. It is extremely rare to get good media coverage for a condition and treatment that is not embraced by the mainstream. And then to have multiple media outlets in one day, and a story people truly want to follow up on--it's quite wonderful. I know people are anxious to see certain others or work highlighted. There is time for that, and it will happen. I know it is hard to be patient, but Lynn's exposure does not cancel out the opportunity for others. Lynn (not to mention Lauren!) has the potential to be an excellent spokesperson for PANDAS. She has promised to carry the cause for "all" our kids. Let's give her the benefit of the doubt. Please know that as a moderator of the forum I will delete or edit posts that seem harsh or derogatory, as they run contrary to our mission. I hope you all understand. Let's all be on our toes with the new PANDAS exposure and see what we can do to further the cause. Sheila

Thanks for the feedback, everyone. Chemar had the bright idea. Please share any additional suggestions! Sheila

Hi Kathy, Sorry for the challenges you are facing, but it's good to know your son is now finding some help at school. There's a fair amount of disagreement among professionals on how to distinguish different conditions on the autism spectrum. This summary from Yale School of Medicine seems to be an overview for PDD NOS that is easy to relate to: http://childstudycenter.yale.edu/autism/pddnos.html How do you feel that description fits for your son? Meanwhile, just wondering -- have you seen any ideas on the Tourette forum that seem to resonate with you--approaches that might help your son's behaviors and tics, or anything that seems to make him better or worse? Best wishes, Sheila

Hi Stage Door-- I'm glad you have the OCD properly diagnosed and under control, as you say. That must be such a relief for you. Great that you can now move on with your life, even though it is later than you would have wished. Are you on a standard medication that is helping? Can you give me your email address? I will send a few topic suggestions. We need to know a little more about yourself. Here are some questions: What do you mean about being part of a nonprofit? Were you at home (not able to work) but exploring things on the computer etc? Or studying anything on your own during your down time? Did the OCD make you study certain topics in detail--was there any positive from it, from an academic point of view? What area of business do you intend to go into? What were your best subjects in college? Thanks! Sheila

Hi Lynn, I love the title of the session, on things not being black and white--that's perfect with the animal image, as you say--it will really help people remember the message. The concept of the "many faces" of PANDAS is so important. That's a good idea, to have a slide show as you are planning, something to give a visual that the audience can really relate to. I hope members who are comfortable with going public can send you what you need. I know you and Dr T will have plenty of information to convey during your one hour slot. Time goes so fast during presentations like this. I wish you both all the best with it. It should be a great conference, and I hope to be there. I certainly hope Lauren is doing better every single day, Lynn. You know we're all rooting for her! Take it easy as best you can, and try to get caught up on your rest before the big event. Sheila

Hello everyone--This note was sent to me as a private message, rather than being posted here as I know this new user had meant to do. She has been alerted to watch for your responses. Thank you all! Sheila From MeltonJ1 "HI, This is my first time using a forum. I have a daughter who is 8 years old and is taking meds for ADHD. She has gotten a tics from one of the medicines. I am on the forum, because the tic has come back and the tics is she sniffs all the time. The only time she isn't sniffing is when she is sleeping. She is taking abilify 30 ml and clonidine .1 ml we are wanting to take her off of the meds. and start her on ( FOCUS FORMULA AND BRIGHT SPARKS ) Is anyone ever uses this product and is it safe for her to use. I am disperate and I would just like for my daughter to not take anymore of these medication that the doctor keeps putting her on everytime she has problems." From MeltonJ1

Hi everyone. . . Laurena82 has a great memory for things from so long ago! Our connection with the TSA is this: About 20 years ago a woman named Ginger Wakem started an alternative therapy network and the TSA carried one of her fliers. She was disappointed that TSA medical and scientific advisory boards were not interested but she was excited and networked on her own. Eventually I took over where she left off. When I also could not make progress with the TSA, I started ACN. We had a print subscription publication, Latitudes, and assembled a wonderful medical board that covers a number of different disciplines. Then we switched to an online newsletter. Meanwhile TSA quit carrying Ginger's flier. The TSA is exceptionally resistant to any non-drug approaches beyond behavior therapies. What the TSA is good at is general education, especially for school related needs. They have a number of support groups run by well meaning people who are limited by TSA guidelines. Some groups split off so they can have more freedom. Overall these groups provide an important service for families needing support. Unfortunately, TSA has a monopoly on Tourette information from a PR point of view. They have millions of dollars and have always managed to squelch any PR opportunities our small organization has had--even when producers have filmed our efforts and been excited about what we were doing, or when producers gathered success stories from our forum members whom they wanted to include in their documentaries. This is a fact--the producers tell me why they had to cut us, and there is always a TSA connection. Some people within the TSA know that we are going in the right direction, but they tell me their hands are tied. The TSA assigned a "liaison" to our group from their medical board, but it was more window dressing than anything and no longer exists. I once spoke at a TSA national conference but it was many years ago. When my book Tics and Tourettes came out, at the next TSA conference they had a medical panel do a presentation on alternative therapies. I was not invited to participate, and they basically told families there weren't any studies and implied the doctors involved were quacks. I was expecting much more from them. But at this point I have no illusions. They are who they are. This is TSAs current statement on alternatives: HERE They link to our organization on their site, which we appreciate. It will be a long time before TSA provides help to families who are looking for therapies beyond drugs. Once the studies finally start, "more studies will be needed." You know how that goes. The TSA should generate interest in these types of studies now so researchers are motivated to do them. They have the power to do that. In the meantime, it's all about forum members like you, and the practitioners who understand the role of the immune system, the environment, and diet in neurologic disorders--and others who are open to a number of different approaches that can affect and improve brain functioning. ACN is the key voice for non-drug therapies for tics and Tourettes, and fortunately we are still here -- after so many years. I have now seen Dr Gott's article, thank you for pointing it out! It would be great if a number of us could respond!

Hi Vickie, It would be good if we could have accounts by April 20. About 8 weeks from now. Thank you! Sheila

Hi-- Good question. I would suggest about 1200 words or less (or 4 pages double spaced in a word doc). But no hard and fast rules if you want to say more. If one writes a lot it will be edited down, but important details may emerge with longer documents, so follow your gut instinct. If it's too short I will ask for more details. General ages and dates are good so we can keep track of the progression. (i.e symptoms started in the summer of 2008 [or July 2008] at age 7). Most submissions will have some editing to keep them concise, or to be make sure they are comprehended by readers. Any edited article will be sent back for final approval, to make sure the finished version is OK with the writer. Also, I often need to go back to the writer for some clarification. It is fine to mention doctors you went to who were not helpful, but I will not paint a specific practitioner in a bad light. For example one might say they went to the Cleveland Clinic and a doctor there did such and such-- and child had a bad reaction or it was no help--but I will not print the name of that doctor. You can tell me, but it won't be published. Of course we do want to know when someone helped you, and those names will often be included. So please be sure to add that to the account. Also, it is key that a patient has had a positive response for a long enough period that one feels it is a true remission. That's a bit of a judgement call, but writers should keep that in mind. Thanks for writing, Sheila

Hi Linda-- Funds from anything published by ACN go directly to ACN, to support our operating costs and efforts. The PANDAS stories would be used for an ACN publication. When we can move beyond our basic expenses, then we aim to pay a staff. Currently we rely primarily on volunteers, but we would like to have a staff as most other oranizations do, as we could be much more effective. (My book on Tourettes is by ACN.) I hope that answers your question? Sheila

Dear Folks, I can feel your passion, but please -- 1984? How can some of you be so adamant about posts being removed when you don't know why they were removed? I don't know how ACN has come to be treated with such suspicion when we have hosted our Forums for a very long time without any interference of the nature you are accusing us of. Please try to see what you have written with the following understanding: Three posts were removed. . . One was removed by ACN. This was from Dr Trifiletti and it was posted on 3 of our forums last night, introducing himself and giving a text that he will now admit (we have been in touch) was outside our guidelines. We are a nonprofit organization and are not allowed to permit anything that can be perceived as self-promotion. This goes for authors, people selling nutrients or products, healthcare professionals--whoever. Something may slip by us or be OK on a one time basis, but we have to be very careful about this. We have been fine with Dr T posting and he knows this; he has added a great deal to the forum conversation and I know he has been a great help to some of you. He also knows he is welcome to continue posting. We do not endorse any one person, and are not allowed to under federal nonprofit rules. We have never questioned the content of his previous Forum responses nor edited them. Two This must have been removed by Dr T himself. He had written a "good-bye" post, as an initial response to #1 above. We did not remove post #2. Three This was removed by our webmaster because it suggested that people move to a new forum by Dr T, and it implied (whether intentional or not) this was needed because we were censoring material. I support that removal because the post was a misinterpretation of what has taken place. I hope those of you who have posted on this thread would please re-read your notes, and try to understand what I say when I mention the tone of this forum. Touchy is one thing, inflammatory is something else! It is disheartening to be treated in this manner. Dr T and I continue to be in touch and will let you know the different resources available to all of you. In the meantime -- welcome back to 2010! Sheila

Thank you all for your comments. Please see my recent post on collecting stories. Thanks again! Sheila

Hi Everyone-- We would like to collect your personal story in dealing with PANDAS--the background, symptoms, various treatments tried and any specific PANDAS therapy--and results. They will be used for an ACN publication to share with others. Please send to me at Sheila@Latitudes.org. All communication will be kept confidential. I will be back in touch with you by email for clarification when needed. Any stories shared will be kept anonymous unless you specify otherwise. To clarify a post yesterday--I am a PANDAS believer! In no way do I question that PANDAS exists and that it can be successfully treated. What I am uncomfortable with is the implication of a single definitive assessment and treatment protocol at this point, because of differing opinions among those treating the condition; so much more needs to be learned. Because of that, the Forums will try to avoid endorsing a single treatment or single physician for referral purposes. This guideline applies to all Forum topics. I am aware of the major medical politics involved with PANDAS -- and how frustrating it is to try to fight the system. But progress is being made, thanks in great part to determined parents such as yourselves. Your stories can help! thank you, Sheila

Hi Worried Dad--I saw your response to the articles in Latitudes, and I understand your reaction. We routinely do research updates for different conditions, and the studies do not always support ACN efforts -- but we have readers who want to be updated on conflicting research. I can see that with your personal experience and passion for PANDAS that the NIMH summary was not of interest, and indeed annoying for you to read. Many of our subscribers are not familiar with PANDAS and the intent was simply to give them a basic overview of the current state. Having gone up against the Tourette Syndrome Association for 15 years, I know well the frustration you refer to. CheMar, whom I am extremely grateful to for her Forum service, meant well in noting there were PANDAS articles in the issue, and she was not yet aware of their standard nature. It would have been better if I had offered qualifying material, as you say. I do hope to interview a researcher in the future, for the next issue or two. We could plan a feature on family PANDAS experiences. Would you like to send yours to me at Sheila@Latitudes.org? I would welcome other accounts as well. I agree, the inspiring Saving Sammy story has had great exposure. Another topic: I'll take this opportunity to mention something about the Forum and you may have a comment or suggestion. I'm really pleased that the PANDAS forum has been helpful to so many people, and am glad to see it growing. However, I have had complaints in writing and by phone from some members who are dealing with TS/tics or OCD. They say they are being told with insistence by PANDAS forum members that the problem must be PANDAS, and they absolutely should see this doctor or that doctor. We never used to receive these types of complaints. While it may be tiring to hear that the condition is controversial, I think it's important for some PANDAS Forum members to keep this in mind when advising (directing) others. No one has all the answers, and online "diagnoses" are fraught with problems. Traditionally, our Forums have been known for their supportive nature, people trying to help one another without imposing on them. Do you have any suggestions for dealing with this issue? In any event, I sincerely thank you for your comments. I know they were well intended. I do "get" what you are saying, and will aim to provide more substantive PANDAS info in the future! Best wishes, Sheila

Hi everyone--I have been following this topic and want to congratulate and thank all of you who are looking into this and sharing your thoughts on it. The reason we call our group Association for Comprehensive NeuroTherapy is because a comprehensive approach is often the most successful, and we are very broadminded in what those efforts might be. I wanted you to know that I am in the process of exploring this with specialists, and am glad that others are doing the same. Let's continue this forum "study group" together and see what we can learn. You are all pioneers, and will be helping many others by sharing both the negative and positive results you have personally, and by sharing your findings through readings. Of course we are always so saddened for the whole family when someone does not find success. TMJ and other dental/jaw related disorders are clearly involved with the cranial nerves, and we've had reports of people experiencing tic increases with certain dental issues like spacers and braces. Even the types of metals in the mouth, and electromagnetic influences, can affect the nerves in that area. One person wrote to tell me that if he presses his tongue firmly against the roof of his mouth it helps his tics. There are a number of ways to go about adjusting jaw bite issues, and not all experts agree. I saw this firsthand when I developed trigeminal neuralgia last year--(extremely painful! Yikes!). I was convinced it was triggered by an uneven jaw bite and teeth grinding I'd developed, and had an appliance made, similar in concept to what Dr Stack does in the video that Char shared, but looking a little different. I wore it at night and sometimes during the day. At the same time I faithfully followed alternative recommendations for nutritional support and diet to calm the nerve and aim to build the myelin sheath around the nerve. For me, the combination did the trick and gratefully I am fine now. (The appliance did not offer instant relief they way Dr Stack's patient had instant tic relief; the benefit was over time). I also had my bite balanced by the dentist--grinding teeth that "hit." My neurologist did not accept my theory and was not interested in what I had done to recover. While looking into TMJ type issues for myself, I saw how they can be treated by appliance, craniosacral therapy, upper cervical chiropractic, osteopathic manipulation, exercise, etc. depending on the exact problem --which can vary widely -- and the extent of dysfunction. I find the video by Dr Stacks quite impressive. As Chemar pointed out, there is not going to be one answer for everyone. As an example I am remembering a 4 year old boy who had such severe tics he often had to be carried when he couldn't even walk, and the mother traced it to an exposure to arsenic in a toxin in the wrap-around porch of their new home. Once he was detoxified (and the porch issue removed) he was OK. He didn't need an appliance. I would suggest that the challenge is going to be finding the key factors involved in an individual's case while making other common sense approaches that will strengthen and calm the central nervous system. Thankfully, this appliance approach opens the door to wonderful new opportunities of healing for TS and is a new avenue to explore. Again, thank you all and please keep up the really great work. I have faith that you are the group that will make a significant contribution to the field by moving this concept forward for meaningful discussion and better understanding. And as always, I wish each of you the very best in finding the healing you need. Sheila

Dear Paul, I am sorry you have been going through such a difficult time. I know you wanted to have each paragraph answered separately and I apologize that I cannot do that as it is too late at night right now, and I have work in the morning. I hope you understand that. What has happened in the few days since you wrote? Have you heard from Brenda? It sounded like things were looking up for your relationship, except for that last incident you described. It seems you have been through a lot together, and you understand each other, which is a good thing. Let me know how you are right now, OK? I was not on the computer to see your letter until today. Sorry. Wishing you all the best, Sheila

Hi-- what you are describing is pretty common but that doesn't make it any easier to deal with, I know. Usually it is diagnosed as OCD if it starts to interfere significantly with your life. Otherwise they are tendencies of obsessions and/or compulsions. And the movements and noises sometimes go along with it. I'm glad you wrote. Where do you live please? Sheila

Dear Jon, Thank you for sharing your thoughts and experiences. I know it must be a hard thing for you to do. You are being tormented by your mind, and there is help for that. But you have to get professional assistance. There is nothing I or anyone else can tell you that will fix this problem. Sleep patterns do make a difference for people, but what you are experiencing is too serious to have that make a big impact. It's not right for you to be so troubled by something that is beyond your control--something that could be helped. Please don't continue to suffer alone. Tell one of your parents -- as I said, they don't need all the details -- they just need to know you are not able to control some of your your thoughts and obsessions. Share some of the less personal ones. And get to a specialist right away. I would print this out and give it to them. Find something in it that you can relate to about types of thoughts and just say "that's what I have and I need help." Look how common it is! Your family would feel terrible if they knew you were suffering. You are a good person. It's just that part of your brain is malfunctioning. Please tell me you will do that. You deserve better than this. There is relief out there for you! You just have to be willing to let someone help you. Will you do that? Sheila

Hi, Jon--I read your letter sent this morning and first want to offer my sympathies for what you are dealing with. I also want to encourage you to seek professional help right away. I don't think you have to tell your parents everything that you are thinking--I would leave that to your doctor, as to how to handle it. The main thing is to tell them that you are troubled by thoughts that seem like ODC -- washing your hands, worrying, etc. (OCD has been in the news and on TV shows a lot lately. Do you think they are familiar with it? There is a lot of it now, so you are surely not alone.) You are lucky to have such a great family, and you know they would want to know so they can help you. You may well find that what you need now is a treatment more related to fixing your brain chemistry than counseling therapy, though that can help you with all you have to deal wilth. Please tell your parentes this week, and start getting some help now. There is a whole new world out there for you! This forum may be able to help you find environmental and dietary causes and natural approaches that could make a big difference in how your brain is reacting. But in the meantime you need to get additional assistance. Chances are some medication will be prescribed, and if so, you can ask the doctor to start slow and build up as needed. Once you get a handle on things, you and your family can work together at natural options whenever it seems right. When you find a therapist (maybe separate from the doctor) you could consider "cognitive therapy" which is helpful for many. They will know what it is. Good luck and I hope you will keep in touch with us. Please watch your diet--no artificial flavors and colors, easy on sugars, eat regular meals with some good protein at every meal, and stay away from scented products and chemicals. Read other letters on this forum about nutrients, etc. You need an immediate intervention right away, and your folks can help you with that. Does this make sense to you? Best wishes, Sheila