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Megs_Mom

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  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.
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