Sheila

Thank you to everyone who has responded to this request for help! Your donations, pledges, and offers to help and share ideas has been very encouraging. Please keep it up! It means so very much, and is so needed. http://www.latitudes.org/donate.html Gratefully, Sheila

Hi everyone -- I'm writing to request any of you who have experience in fundraising, or who can volunteer to help in our efforts, to please get in touch with me. Our small grassroots group has grown into what you see today. (Our site had almost 4.5 MILLION hits last month!) But as you can see, most of what we offer is free--so we need to rely on donations. We're very gratified that so many people are being helped. It's wonderful! But, our 501C3 nonprofit desperately needs funds. We need a new website, PR, networking, computer equipment and programs, and some part time staff. We used to do fundraisers each year with a wonderful man who dedicated his Triathalon race to ACN, and that at least kept us afloat. But he has not been able to do that for the last few years. Things are very tight at present, and I am open to your ideas and advice. I really hope some of you can find time to respond--or can pass this to someone you know. Please send a PM or email me at Sheila@Latitudes.org . Thanks so much. Sheila Director ACN Editor/Latitudes www.Latitudes.org

Hi everyone -- I'm writing to request any of you who have experience in fundraising, or who can volunteer to help in our efforts, to please get in touch with me. Our small grassroots group has grown into what you see today. (Our site had almost 4.5 MILLION hits last month!) But as you can see, most of what we offer is free--so we need to rely on donations. We're very gratified that so many people are being helped. It's wonderful! But, our 501C3 nonprofit desperately needs funds. We need a new website, PR, networking, computer equipment and programs, and some part time staff. We used to do fundraisers each year with a wonderful man who dedicated his Triathalon race to ACN, and that at least kept us afloat. But he has not been able to do that for the last few years. Things are very tight at present, and I am open to your ideas and advice. I really hope some of you can find time to respond--or can pass this to someone you know. Please send a PM or email me at Sheila@Latitudes.org . Thanks so much. Sheila

Hi everyone -- I'm writing to request any of you who have experience in fundraising, or who can volunteer to help in our efforts, to please get in touch with me. Our small grassroots group has grown into what you see today. (Our site had almost 4.5 MILLION hits last month!) But as you can see, most of what we offer is free--so we need to rely on donations. We're very gratified that so many people are being helped. It's wonderful! But, our 501©3 nonprofit desperately needs funds. We need a new website, PR, networking, computer equipment and programs, and some part time staff. We used to do fundraisers each year with a wonderful man who dedicated his Triathalon race to ACN, and that at least kept us afloat. But he has not been able to do that for the last few years. Things are very tight at present, and I am open to your ideas and advice. I really hope some of you can find time to respond--or can pass this to someone you know. Please send a PM or email me at Sheila@Latitudes.org . Thanks so much. Sheila

I do not recommend this online text. It is nothing new, and it is almost identical, word for word, to another online book by someone who who copied some of my material and I had to ask that it be removed. It's not worth the money. I am usually not so blunt but that's the fact!

Most people do these already but there might be something (like the toothbrushes) that folks forget to do. This just came out today: http://www.healthfinder.gov/news/newsstory.aspx?docID=643217

I deleted a thread today because its main basis was inappropriate -- unfortunately it also included some good reminders from Chemar that were lost and bear repeating: Members should refrain from diagnosing. Use of a double ID is not permitted. You may not post under one name, and then create a second ID with a new display name for posting, as if you are a different person. Exceptions may be made only by administrator for a special situation. All members are guests on this forum and should respect the guidelines without it being necessary for admin to review them again and again! (Thanks Chemar--for this and for all your ongoing help!) Sheila

We have a policy that doctors cannot be bashed by name. This identification includes using full name, abbreviation, letter, or otherwise. I have had to spend considerable time lately reading through long threads that contain posts where people are being overly harsh related to a specific doctor or to each other. I'm finding it requires too much attention to try to review and edit them in a careful manner so as to save the good material while removing the bad. In the future I will have to delete the whole thread or post. Offenders will get a warning and are then at risk of being banned from the forums if violations continue. We appreciate your reporting of these incidents to the moderators/admin. Everyone deserves the very best when they come to our forums looking for help. Let's give it to them. Sheila

Hi Folks -- I toned this down in spots. Once one post was adjusted, sometimes others needed to be changed also so they would make sense. Sorry in advance if anyone is annoyed about it. In a nutshell, Dr Jones is a respected and extremely experienced Lyme specialist--as well as a pioneer in the field. There are certainly other good Lyme docs around the country. it seems most of the medical fees for consultations and lab testing on conditions we on these forums are concerned about would not be considered a problem if insurance covered them---nor are they necessarily out of line when compared to other specialists. Beyond that of course, everyone needs good medical coverage to begin with. Sadly, we know this will remain a huge problem and source of pain for our families for quite some time. If one does have insurance, it is always a good idea to check to see if the same lab work can be done through a location where insurance coverage will be better, if that issue applies. Since the thread switched topics along the way, I am now closing it. Thanks for everyone's input. Sheila .

Hi --this is a very delayed response! There is now a link on the home page of the Autism Research Institute to search for a DAN doctor. See find a clinician near top of page. http://autism.com/

I just removed a thread that had some good information on it but also too much bashing and/or personal discussion of doctors. Parts were also overly confrontational in tone. I don't have time to sort through it now and edit some sections while leaving others, as it is several pages long. So for now it is simply gone. Please remember that the forum is not a place to denigrate physicians, nor to argue with members in a way that can be considered nasty or rude. Thank you all for your help with this. Sheila

Please see this link for a questionnaire on OCD for all ages: HERE. The information will be used for a book on OCD. The author Anne Watkins, PhD, has dealt with OCD for much of her life. In collaboration with others, she drew up a manual and online questionnaire and launched it on the OCD Action website and Yahoo site in June. The survey takes around 30 minutes to complete and is totally anonymous. They are aiming for 200 completed surveys so that it will carry weight with professionals, and currently have 137 completed surveys. Proceeds will be donated to OCD foundations. If you do not wish to complete it online, details are given below for a manual version. I hope some of you can find time to respond, as it seems to be a worthy endeavor. Sheila The aim of this questionnaire. When sufferers of OCD go to the professionals for help, treatment starts with the filling in of questionnaires. These questionnaires, which are devised by professionals, help the professionals to make the correct diagnosis and to ascertain the appropriate treatment required. Further questionnaires are used throughout treatment to monitor the progress of the sufferer. This questionnaire takes a different approach. Because it is based on questions put forward by OCD sufferers (rather than the professionals) it enables issues which may not have previously been seen as of relevance by the professionals to be taken into consideration. In so doing, it seeks to ascertain: · The importance of early diagnosis; · The need for quicker and more targeted treatment; · The need for additional counselling if the sufferer has been abused or suffered trauma; · The need for closer monitoring of suicidal patients. It also seeks to ascertain: · Whether or not there is a need for more information on this illness, regarding symptoms, available treatment; waiting times for treatment; the success rate of treatment; side effects of meds etc; · Whether or not a sufferer can obtain and retain control of his/her OCD without the support of parents/partners/friends; · The effect which OCD has on the sufferer's education and employment/promotion prospects; · The effect which OCD has on the sufferer's experience of childbirth and bringing up children; · The benefits of additional support for patients in the form of: 1. Self help groups; 2. On-line forums; 3. Volunteers with OCD prepared to man phone lines; books and leaflets written by sufferers containing tips and advice for gaining and keeping control. The overall aim is to help each sufferer to get better control of his/her OCD so that s/he can minimise the effect that this disabling illness has on his/her personal and work life. How to access/complete/return the questionnaire The survey is completely anonymous and will not file IP addresses. We have configured the survey this way so that we may elicit the most honest responses. We OCD sufferers treasure our privacy and it is in the interest of all that we designed the survey this way so that sufferers feel comfortable sharing their experiences. We feel that the more honest and comprehensive the answers, the more accurate the book will be, and a voice will be given to those who often suffer in silence. Thank you for your time and consideration. This survey should take about 30 minutes to complete, so please plan an appropriate time to be able to finish it once it's started. Online version http://www.surveymon...JjjaY9N5A_3d_3d MANUAL version: if you wish to use the manual Questionnaire, you can copy/download it from the OCD action website. Please return completed manual copies by post. If you email us on ocdsurvey@btinernet.com we will let you have details of how to do this.

Please see this link for a questionnaire on OCD for all ages: HERE. The information will be used for a book on OCD. The author Anne Watkins, PhD, has dealt with OCD for much of her life. In collaboration with others, she drew up a manual and online questionnaire and launched it on the OCD Action website and Yahoo site in June. The survey takes around 30 minutes to complete and is totally anonymous. They are aiming for 200 completed surveys so that it will carry weight with professionals, and currently have 137 completed surveys. Proceeds will be donated to OCD foundations. If you do not wish to complete it online, details are given below for a manual version. I hope some of you can find time to respond, as it seems to be a worthy endeavor. Sheila The aim of this questionnaire. When sufferers of OCD go to the professionals for help, treatment starts with the filling in of questionnaires. These questionnaires, which are devised by professionals, help the professionals to make the correct diagnosis and to ascertain the appropriate treatment required. Further questionnaires are used throughout treatment to monitor the progress of the sufferer. This questionnaire takes a different approach. Because it is based on questions put forward by OCD sufferers (rather than the professionals) it enables issues which may not have previously been seen as of relevance by the professionals to be taken into consideration. In so doing, it seeks to ascertain: · The importance of early diagnosis; · The need for quicker and more targeted treatment; · The need for additional counselling if the sufferer has been abused or suffered trauma; · The need for closer monitoring of suicidal patients. It also seeks to ascertain: · Whether or not there is a need for more information on this illness, regarding symptoms, available treatment; waiting times for treatment; the success rate of treatment; side effects of meds etc; · Whether or not a sufferer can obtain and retain control of his/her OCD without the support of parents/partners/friends; · The effect which OCD has on the sufferer's education and employment/promotion prospects; · The effect which OCD has on the sufferer's experience of childbirth and bringing up children; · The benefits of additional support for patients in the form of: 1. Self help groups; 2. On-line forums; 3. Volunteers with OCD prepared to man phone lines; books and leaflets written by sufferers containing tips and advice for gaining and keeping control. The overall aim is to help each sufferer to get better control of his/her OCD so that s/he can minimise the effect that this disabling illness has on his/her personal and work life. How to access/complete/return the questionnaire The survey is completely anonymous and will not file IP addresses. We have configured the survey this way so that we may elicit the most honest responses. We OCD sufferers treasure our privacy and it is in the interest of all that we designed the survey this way so that sufferers feel comfortable sharing their experiences. We feel that the more honest and comprehensive the answers, the more accurate the book will be, and a voice will be given to those who often suffer in silence. Thank you for your time and consideration. This survey should take about 30 minutes to complete, so please plan an appropriate time to be able to finish it once it's started. Online version http://www.surveymonkey.com/s.aspx?sm=_2fYkVhe6n4zgeUJjjaY9N5A_3d_3d MANUAL version: if you wish to use the manual Questionnaire, you can copy/download it from the OCD action website. Please return completed manual copies by post. If you email us on ocdsurvey@btinernet.com we will let you have details of how to do this.

This Lyme and Related Diseases Forum has been started at the request of members, and we welcome participation. The forum is open for discussion on a variety of issues in tick-borne disease: diagnosis (and misdiagnosis!); treatment; lifestyle; coping; and patient or parenting problems/suggestions. In time we aim to provide information on natural treatments that may be helpful as part of an integrative approach. Please be kind, supportive, and understanding to all: Testing protocols, diagnosis, and the treatment of Lyme and related diseases are evolving, without full consensus among experts. No one yet has all the answers (not even our wonderful members ). Please keep this in mind, and we ask that you follow our Community Forum Guidelines on civility posted in Announcements, above. Thank you, and I'm sure we will all learn a great deal from each other! Sheila Resources These organizations are some of several that provide info on Lyme and associated conditions: Columbia Lyme ILADS (International Lyme and Associated Diseases Society) Lyme Disease Association Time for Lyme

I just wanted to point out that this is an approved effort. The therapist is a member "buddy" of yours with over 600 posts. She needs to maintain her anonymity on the forum so she used a new member name for this request. It is a short term project, so please note the deadline of Sept 7. Sheila

Bumping up an approved announcement.

Hi --I think Chemar called this one correctly. We can't do a negative system due to legal liability, and it is also against our ACN guidelines. On this site, you will have to resort to PMs to share your experiences. I know firsthand the frustration of finding physicians who "get it" -- regardless of the condition. I didn't deal with PANDAS but have been through a number of other difficult situations with family health issues. Just part of the problem with a scoring system or referral list: Doctors change their protocols when new research or best practices are shared, or based on personal experience. So someone who was closed to PANDAS a year ago may be open now. Different approaches work for different patients, so a doc who 1 family was very unhappy with could be just what someone else needs. Plus, the very nature of PANDAS makes it difficult -- a quick improvement resulting in a positive "report" can be followed by disappointment several months later causing the family to now doubt the treatment. Keeping something updated would be very tricky. Perhaps someday another site will have a system similar to what the Defeat Autism Now group does -- offering a list of physicians who commit to using a particular protocol, and the list includes when they were trained through specific conferences/seminars. Then the user can decide if they think the person is qualified for their situation. This has taken years to develop by DAN and they have the benefit of regular conferences that promote certain approaches. At present, treatment protocols for PANDAS are in such a flux that it is difficult for doctors to know what should or should not be recommended in particular cases, and there needs to be a protocol overhaul. It's going to take a bit of time to sort things out and it is, unfortunately, a very difficult time for families. As parents you are doing a great job of providing mutual support for positive findings and sharing your specific physician negative experiences by PM. I do wish we had easier answers for this issue. Sheila

I understand the concern on both sides and appreciate the feedback. The new topic is being started in response to requests from people dealing with lyme who felt lost on the very active PANDAS-focused forum. In addition, there were complaints that it was causing some confusion; that people dealing with a clear diagnosed case of lyme were assuming PANDAS treatments were totally what they needed to follow and were contacting PANDAS parents by PM for this info--and the PANDAS parents were uncomfortable with this. The forum main topics tend to have overlap. A lot of people with TS have ADHD and/or OCD arising from related biomedical issues, yet we have separate forums for the conditions. We have an OCD forum separate from PANDAS; Lyme is often misdiagnosed as TS, etc. Fortunately the forum has a good search function and people can always post wherever they like. The fact is, PITAND is barely recogized as an acronym on the internet, and most parents and doctors don't know what it means. (Try a general internet search for PITAND and see how little comes up). So it is not very helpful as an addition to the PANDAS forum topic bar for new people checking in. They of course do recognize the term lyme, but if we specified lyme on the PANDAS forum header, I think all the new lyme posters would dilute the very important PANDAS conversation that takes place now. I would like to start the separate lyme forum sometime next week and give it a chance. I hope to have it include natural treatments and lifestyle approaches that might be helpful for parents, in addition to other lyme issues. I hope the decision will make sense to everyone as time goes on, and I do apologize to anyone who will be inconvenienced by it. Sheila

We will be starting a separate Lyme forum shortly (after our webmaster returns from vacation). If you have any specific suggestions or comments on this, please drop me a PM. It's been on our radar for a while now, as we know the topic comes up frequently in TS and PANDAS forums and there have been several requests for it. Thanks so much. Sheila

Hi Friends in the Forum--I am out of town and confess to not keeping a close eye on the forum this last several days. Certain activities need to be approved before posting. This is in our guidelines. We allowed a contest with a goal to raise money for research through Pepsi and are glad it was successful. That effort did not solicit funds from members. I have removed a more recent post on raising money and will address that more fully on my return to town later this week. Also, please do not post with the purpose of announcing meetings or conferences, or recruting members for other forums. These types of posts need approval before being shared with members. thanks, Sheila

This is totally incredible, and no small feat to be sure. I'll bet Dr C is pinching herself too. Hugs all around! Sheila

Hi Karen--I saw your note on having seen a physician who was included in my book, and feeling it was a waste. Would you mind sending me a PM and letting me know more about who you saw and what the problem was? I don't personally know all physicians who are included and haven't seen their offices. None of them are officially recommended as I recall, but they are all ones who others with TS had good experience with at some point--unless it is someone I am not thinking of at the moment. I'd like to look into it for when the book is due for a reprint. Thank you--I'm sorry you didn't get the help you were looking for. I hope you find everything your son needs. Best wishes, Sheila

Hi All--I've made some edits on posts here, and I agree with MomwithOCDSon. It is fine for members to comment if someone doesn't think the information in Beth Maloney's Tool Kit is worth the cost. But it is not OK to post assumptions on her motives or those of anyone in her family. I don't know Beth personally, but I believe she has made an important contribution to the field. She doesn't have to work with ACN or anyone else, nor does she have to produce all her material for free to avoid criticism. (Also, even when sales go to a foundation rather than directly to a person, that foundation has a right to pay staff including the director.) There will be different voices out there for PANDAS, that's a given. Let's focus on agreement or disagreements on facts without getting personal--while at the same time recognizing that the current "facts" on PANDAS are a moving target, and no one has all the answers. (I know this isn't easy when many of you are so passionate about this condition.) As an aside, there is no one physician who helps everyone, and costs for medical services are all over the board. It sounds like Beth has already been helpful to people by answering emails, etc. The reality is that people have a right to charge for their advice and material, even on a topic as devastating as PANDAS. (Otherwise everyone writing about cancer should be expected to provide information free of charge!). Thankfully, some people like Diana have volunteered their services and many have benefited. And ACN's forum will always be free. Sheila

Hi Carolyn! I was happy to see you found time to post on the forum. I know how really busy you are. You've done such an amazing job over the years, first getting yourself healthy, then preparing for Aiden's birth, and now raising him to be so happy and strong. What a fabulous smile he has. You've faced a lot of challenges and have shown amazing resolve and resiliency. I'll never forget meeting you several years ago in Boca Raton when you came to FL for your first appointment with Dr Robbins. No one could believe you made your own determined decision and flew half way across the country like that by yourself for help. Then you did everything you were advised to do and more--you were the ideal patient. And it all paid off! I hope you will please keep sharing with everyone on the forum when you can. And you know you will always have lots of friends here who care about you. Hugs to you, and a happy birthday hug to Aiden! Sheila

Hi-- A general processing speed deficit can be considered a learning disability. See this link from one university, I did not do a thorough search--you will find it in the list: http://www.mnsu.edu/affact/accommodating/typesof.html Typically a learning disability is determined relative to discrepancies in scores. I say typically because criteria is sometimes subjective or changes from state to state or with time. Your scatter in scores suggests a learning disability in processing speed whereas if your other scores were lower, you would be simply considered a low functioning student--which you are not. See the info below and consider exploring more options related to special accommodations that might be available at your university. See this from Wikipedia: The term "learning disability" does not exist in DSM-IV, but it has been proposed that it be added to DSM-5, and incorporate the conditions learning disorder not otherwise specified and disorder of written expression. Types of learning disabilities Learning disabilities can be categorized either by the type of information processing that is affected or by the specific difficulties caused by a processing deficit. By stage of information processing Learning disabilities fall into broad categories based on the four stages of information processing used in learning: input, integration, storage, and output.[6] See in link: http://en.wikipedia.org/wiki/Learning_disorder I hope that is some help and that you get the support at school that you need. Sheila