Jump to content
ACN Latitudes Forums
  • Announcements

    • Administrator

      Forum Community Guidelines

      Forum Community Guidelines

      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.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. 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. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator

      Disclaimer and Privacy Policy


      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010


  • Content count

  • Joined

  • Last visited

About Megs_Mom

  • Rank
    Advanced Member

Recent Profile Visitors

5,575 profile views
  1. Hi all - there are some opportunities for longer shows - it's really hard for media to really understand the illness in a few second sound bites. A PR person in NY is working on this - we'll see if it comes to life or not. But she is looking for a few families who would be willing to be featured. That's always a tough decision, but if anyone is interested, here is her email address - you can contact her directly, or PM me if you have questions. annie@pacepublicrelations.com I've talked to her, and she is very respectful. Some shows want to see a family that has already recovered, while others are interested in a family that is still seeking answers, and may be just starting treatment or seeking treatment. So anyone can feel free to contact her. It's amazing what everyone is doing to raise pandas awareness lately. It's been an incredible few years in many ways, and I stand in awe of this group of parents. With so many kids and families still suffering, it'll be a long path. But hopefully much of the research going on right now, will give us the answers we need.
  2. He sounds like a pretty motivated kid - if so, there should be more meat to the sessions. And at age 8, she should be giving you a lot of training on how to implement the tools to deal with OCD. You do have to pick something to work on, but you and your son could do that as homework, not in a session. Then you would break that OCD issue down into baby steps and start doing homework every day, for about 30 minutes. Naming the OCD (externalizing it) and building a heirarchy of fears are great steps. But now he needs to take the first step towards fighting it, and learning to feel some pride in his success. Has she set up a reward program for him? I think your gut is likely right. She is teaching him some good information, so it's not wasted time - but without implementation and practice, he won't start to see improvement. Maybe ask her for a specific plan for homework for the next week, or tell her what you want to try to work on. Pick something that is really minor, that has a low fear rating - and ask her how to set up a reward plan to use while you do the homework. If she can't answer those questions, then you may be wasting your time. But she may just be trying to get to know your son, and not realize that you guys are ready to start working. I find a lot of pediatric therapists are just slow on the front end. Maybe that is good for some kids - others just want to work.
  3. We found OT very helpfu, on a variety of fronts. But once we treated the illness, her handwriting skills suddenly took off. While she was suffering, while I can't really say that OT improved her handwriting - it did help her stamina and confidence. She was so exhausted by writing that it wss a major battle to get her to write. She did this game with a clay - texture kind of like silly putty. We actually had three different strengths of the putty. We had small objects that we'd "hide" in this, and then she would have to squeeze and pull at the putty to find the tiny toys. She loved it, we carried it everywhere with for a while, and it did seem to help. I'd think you could make this at home. Definitely, for us, the best thing was antibiotic treatment. But I am always "pro" things that help kids get through the sypmtomatic stages.
  4. I found this one interesting. But can't find the follow-up research you'd expect in 2 years. So I'd suggest that it's simply a "directional" study that will be interesting to follow in future research. http://www.sciencedaily.com/releases/2009/03/090311085151.htm.
  5. Requesting Prayers

    I watch for your posts because you are one of the most amazing moms that I have ever met. I know you'd do anything to keep her feeling well, and I know what courage it takes to keep looking for answers. Will be thinking of you - and hope whatever you find, helps her feel better in the end. I have always wondered about the head banging in a lot of kids. What could motivate that? It's such a common symptom, so it must be motivated by something - or relieve something. Good luck!
  6. Newbie here! (Waving to everyone)

    Hi. Your story is so sad and so motivational. I really hope you find help in a PANDAS doctor. And I love that you have never given up faith that there must be a reason for all of your son's diagnosis. Our daughter, by age 7, was diagnosed with OCD, agoraphobia, panic disorder, GAD, sensory integration disorder - and showed signs of eating disorders and depression. She was struggling with any kind of writing, and was incredibly socially awkward for a variety of reasons. This was a sudden and complete reversal from who she used to be. We were lucky and found answers after only a few years. Today, she is a vibrant happy child, with only very mild blips with respiratory illnesses. We hope that continues - but more than that, hope she will always be able to find help if she has a futre exacerbation. Every step towards health will be so significant for your son. I hope he is able to find much progress.
  7. "Mechtler recommended that any parents who are concerned their children could be susceptible to conversion disorder, "take away the social media and segregate them from friends who may be afflicted." Maybe we should also burn their books... Or see if they float.... I thought stress caused conversion disorder.... So if you take away social media from a teen....
  8. Carolina Parents' PANDAS Support Group

    Charlotte NC area - survivor (at least so far! )
  9. A Reflection - 2 years later

    That's a great post. I am so sorry about your daughter. You are a very strong person & I'm so glad your husband is strong enough to insist you take time out sometimes.
  10. Eating fears-how to respond?

    Hi Amy - All OCD is frightening, but the eating fears always hit me the hardest. Have you ever done ERP therapy with her? If so, then discussing the fear once, rationally, is generally our first step - and then after that we use ERP. On eating issues, we are usually pretty aggressive, as for us at least, those can build up very quickly. We acknowledge what is happening to her brain & how hard it is, and have a reward for her if she feels she needs it (she's 10 now, so she does not alway need external motivation). If you have not done ERP, then I'd encourage you to start educating her about these brain techniques now. The book "what to do when your brain gets stuck" is an age appropriate workbook to use. Generally, as with all fears, if it is severe, or if it is clearly causing her distress, then we start in baby steps. There are tons of ways to break this down, from watching someone else eat, touching the food with your hands, licking the fork only, taking one bite, etc. If you need more specifics for your daughter, let us know. I generally discuss it right up front at the start, but then see if she can handle it on her own. Sometimes just acknowledging that it is OCD, and therefore an irrational fear, will give the child enough power to take the first bite, and knock ocd on it's booty.
  11. I think it is not a treatment dose - and it's given before or in combo with a therapy session, and allows better work to be done in that time.
  12. You are that far behind on your email! and no sign of improvement in sight!
  13. LOVE THIS! Are you holding back or am I that far behind on my email?!? Very very cool. Dr. Beck, I salute you!
  14. Are you sure he is really doing this? He is confessing it to you - it's unusual behavior, right? Could he possibly be having scrupulosity & confessing things to you beyond what he is really doing? Scrupulosity OCD can really make things complicated sometimes. My daughter used to confess all sorts of imaginary things and I was punishing her for a while until I realized that it was just OCD. Just another thing to think about. if he has to tell you everything that he does "wrong", that is scrupulosity & is a form of OCD.
  15. We loved our final () therapist. Just ask if they have experience with ERP - if they say "what?", walk away!!! (Exposure & Ritual Prevention). Then ask if they have succesfully done ERP with multiple children of your child's age. A lot out there are awful. A good therapist should be paid in gold, they are so worth it. Don't give up. Read John March's book, if you want to see the outline for what therapy should look like, and then be able to kind of evaluate a therapist. Also, I adore Eric Storch's program down at University of South Florida. A lot of parents had great success going there - there is a Ronald McDonald House there too, which I've now had 3 mom friends go to & ADORE it.