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Everything posted by Mom_me

  1. Mom-Me, Well done--thanks for sharing this. We all are fighting for our children, and I certainly understand your mother's heart--it comes across beautifully. I hope one day we meet in person, with children well and whole. My best, Tmom:) Thank you Tmom, I apologize for not having responded sooner. Yes, I would love it if we all could say that our children are well and whole. I feel that this thing can be fought and won. Although it’s very scary in the mean-time. Wishing nothing but happiness for you and your family. With love….
  2. It’s just the tooth. Don’t give him anything else and let his body work a little. I know it’s scary, but my son does this every time he catches a cold, or if a tooth breaks though. I used to want to run for the nearest quick help option, but found it’s best to just let his body adjust. If it’s just the hyper behavior and you’re sure it’s nothing to do with strep or bacteria. He’ll come down in about three days. I’ve been keeping notes, and for (our son) it seems any activation of the immune system (aka a scrape, cold, bite, etc) brings with it a few days of hyperactivity. I started
  3. PhillyPA. You’re so sweet… I don’t feel I did anything more than any other mother fueled by pure desperation. Thank you so much for the kind words. :-)
  4. S&S Thank you for caring enough to read it. :-) I thought maybe it would be too long, but I couldn’t stop. I know I sound desperate at times, but I just care SO much, and I can’t imagine someone’s child is out there suffering tonight. It makes me very sad for them if they feel anything the way we did. I don’t think I’ll ever get over the fear of impending danger, it was very traumatizing for our family, but we now live happily in the moment, yet on guard, and are thankful for the extended time given to us.
  5. Wow! I'm watching my first video from the Dr. you mentioned. "Susan K. Schulman". She seems to be a Smart lady! Yes, she needs to be heard, I agree.
  6. Hi WorriedDadNMom, dcmom, T Mom, and everyone else as well… We saw a “Dr’ here in Florida. My son is currently what I would consider PANDAS free, and has been for quite some time now (although I know it’s always lurking). Occasionally he will get sick with a cold or a tick bite, mosquito bite or something that compromises his immune system, and have slight elevations in his behaviors and tics, but we now know what to look for, and understand serious from regular behaviors that will clear on their own, and if it looks serious we get a Strep Test, if that comes out clear we wait it out. Us
  7. Hello WorriedDadNMom, I made the following audio response for you. I'm limited on time and I speak faster than I type, lol. I hope your DD gets well soon, I'm so worried about our kids.... http://www.youtube.com/watch?v=wDDVSkO5Qek
  8. Yes, however the best antibiotic so far for us has been Penicillin VK.
  9. Maybe laundry soap related. Try using free clear. Big lots sells an off brand for only $6.00, compared to $14.00 for other brands, and it works great! Scented laundry soap can cause coughing as well, not sure if you've had any problems with coughing yet but just so you know....
  10. This helped for my son; maybe it will help for yours. Your children think of you as the boss, period. In the end they know deep down that you are the all-mighty-power and you can control them. So after my son had bad dreams and before I knew the cause was something called PANDAS, I told him one night as seriously as I could, “I’m the boss of you and you’re not allowed to have any more bad dreams”. I would say it as if I was talking to his brain directly, and not him, since I didn’t want him to feel he was causing the problem, but more place the bossing toward the brain. “Do you hear m
  11. If you haven't already, check out this link, it's on the front page of this site. It's about sugar and PANDAS, not everyone has a negative reaction with their childs PANDAS and sugar, but it's worth a listen. http://www.latitudes.org/forums/index.php?showtopic=15236
  12. Thanks for listening to the video/audio. I know I probably came off as absolute in the video, however I’d like to mention, that that is just ‘our’ experience. Each child suffers differently so what is my experience and what works for us, may not work for the next child. But it seemed relevant enough to make a video. Even if it helps just one person I’m happy. However if we could help them all, wouldn’t that be wonderful!! PANDAS is such a horrible burden for the little ones to bare. I hope now that light is being shed on this illness, something good comes of it.
  13. I think we need to start a PANDAS support for the kids. I see many children are old enough to use a computer and my son who is only 5 found comfort in knowing he was not alone in his worries, it helped by at least half if not more. Had he the ability to talk to someone face to face or virtually in his own age group who was having the same problems, it would have help him by leaps and bounds I’m sure. So I’m wondering if it might be a good idea to start a support group for the kids. Maybe a youtube account that caters to them conversing back and forth with others like them, and gives them
  14. PANDAS kids are sensitive to sugar. Please listen to this video. http://www.youtube.com/watch?v=Pm_NcC_9C70
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