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Everything posted by Megs_Mom

  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. 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. 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. 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.
  9. 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.
  10. 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.
  11. You are that far behind on your email! and no sign of improvement in sight!
  12. LOVE THIS! Are you holding back or am I that far behind on my email?!? Very very cool. Dr. Beck, I salute you!
  13. 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.
  14. 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.
  15. What a great thread! I totally agree with all the advice. It's so hard being a pandas parent - to know when to discipline, when to comfort - OCD turns parenting over on it's head. The one thing I would add, is to take some time to just observe. Write down behaviors that are bothering you and why - and what you think is happening in their life when these behaviors happen. Then think creatively about how to effect those behaviors in a positive way before moving to consequences. Sometimte they need to be retaught some things that they learned at an earlier age. I tend to think of it as "brain damage" even if not permanent. Generally, when I start getting frustrated, I know I am struggling with parenting & something needs to change. But I have to think about it for a few days, or I act in anger. I think that there must be consequences for behavior, no matter the reason. We can't raise kids who act out in rage as adults. But the consequences can be careful, impactful, but minimal. They can be appropriate teaching techniques. For me, I also had to be careful that my actions were appropriate to her illness, and not motivated by other adults reactions to my kiddo. So if we were screaming for an hour, but then in the end, overcame the OCD - then that was a reason for a reward, not a consequence for disrupting church. I had to be incredibly attunded to her reasoning and efforts in order to parent her well. Just because I was mortified did not mean that she deserved a consequence. I had to develop a thick skin. When she is healthy, I am a "mean mama" who expects a good bit in terms of effort and responsibility. When she is ill - well I have to find new ways to parent to meet her needs.
  16. Hey - did you have a very high dose of abx around surgery (sorry, am behind on story!!) We saw a beautiful 3 weeks after surgery, and then a fall, and when discussing with Dr. L, she noted the high dose prior to surgery & then the full strenght prescription afterwards for a week. That seemed to keep us incredibly happy for a few weeks until it wore off (Azithromyacin). It's one of the things that moved us to a higher dose vs a preventative dose. BTW, you are the most amazing mom. You have been so strong during everything that has happened. But sometimes that strength in all of us warrior moms, can make us doubt when things start to fall off the cliff. I always worry that I am being dramatic, especially when I know how bad it can get. So feel free to move into panic mom mode - we all do from time to time & use any tool you need (including begging, pleading, yelling, crying) to get him back what he needs. That comment "mommy, I like it better when my brain is not angry" - wow, that just breaks my heart.
  17. Had her tested for everything under the sun . well, almost. There is more to test for now than there used to be!!! No known allergies. No major changes in her life except for major relief of stomach pain and nausea. Her's was clearly ulcers, since we could see on the endoscope. No clue what "caused" them however. But that is the story of her life!!
  18. We use prevacid. I did the same thing in terms of viewing a medical issue as anxiety! I think I told her for about 6 months, that I knew she "felt like her stomach hurt, etc, but she was fine". She also often described feeling like she was going to barf, or complaining about a metal taste. After doing ERP therapy, and eliminating the panic, we realized that her pain/metal/barf complaints actually had a clear pattern related to food/bowel timing. So we consulted a GI, did an endoscope, and found that she had ulcers - normally caused by bacteria - but no evidence of H Pylori. We now use prevacid. My only complaint is that we can't get her off it. I probably used it too long, but we were really afraid to change anything. She rarely has stomach complaints now, although she was also diagnosed with the "symptom" disease of IBS. I should add, that stomach issues did not exist before PANDAS, 2nd episode.
  19. We have been fortunate to have Azith only work extremely well for us long term.
  20. Google MAE SOKOL and PANDAS and you'll find research studies tying PANDAS and anorexia.
  21. Hi - I know you are new to the forum, and don't know if you know how to check your PM's. I sent you a doc reference who is willing to consult with your pediatrician to try to get antibiotics more quickly. If you don't know how to check your private messages (pm), please ask here. Good luck - I agree with everyone else, fight like crazy to get antibiotics. Your son's case is classic - and early treatment is so much better. It took us years to find help.
  22. We were lucky and got back to close to 100% in the first onset with "ignorant abx" for a ear infection. The next 2 episodes were untreated, and both receeded about 85%, but her baseline was climbing rapidly, and it was getting harder to see the exacerbations - she was looking more and more like a kid with OCD. However, even untreated for about 14 months with 3 episodes in that time frame, she has been able to get back to 100%, and is now maybe better than most kids because of the tools she has at her disposal. We only used abx (no IVIG at this point, not ruled out) and ERP therapy for both functioning and healing. Once we started abx, we were back to 80% within a few weeks, and then it just took a while of healing to get back to normal. But if there was any "damage", she is still young enough to build new pathways - either way, getting back to 100% is possible. I do think each child's underlying immune system is part of the picture, and that we are lucky that she is so healthy overall. I still dread another onset. Even today, with almost 2 years of healing, and a happy healthy child, while I don't post much, I read and think about PANDAS daily. It has changed our lives forever. Most of my best friends are PANDAS parents. We just have a different way of looking at life.
  23. http://hereandnow.wbur.org/2011/05/25/obsessive-compulsive-disorder
  24. I think you are making great decisions - you can start again on the traditional ERP when appropriate, but when food issues raise their very ugly head, all bets are off the table, I'll let her eat anything. We also found that leaving out "low pressure" small bites of food as snacks was very helpful. I did not care if she ate a few bites every few hours, so long as she was getting enough throughout the day. Small slices of fruit, crackers, snack mix, etc were just casually placed on table - she would sometimes eat without realizing it, especially when watching TV. Glad he is feeling a little better - hope it lasts. You are an awesome mom.
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