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TeamTyrion

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TeamTyrion last won the day on May 22

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  1. Support is crucial I believe. For years I only went on FB for the Pandas support group. And you can even use an alias or just part of your name if you prefer to be anonymous. That way you can get the support you need without the hassle of being “found” by old friends etc.
  2. I’m so sorry. I know exactly how you feel. Where are you in Canada? There are a couple of great FB groups with a lot of support and discussion. Pandas/Pans Ontario (Canada) Caregiver Support Group is excellent. It covers both tics and other symptoms such as Ocd and anxiety. It’s just a great group to relate to other parents in general. The daily support is necessary especially at the start. We’ve been on our journey for 7 years now and things have improved. I used to wonder how to get through the day too but not anymore. Hang in there. In so many cases things get better. Xx
  3. Just to add - I would definitely recommend the T & A removal. I believe it made a big difference both in ridding him of an embedded infection and preventing further ones.
  4. I completely understand with needing to hear from others. We tried so many supplements over the years. We also did neurofeedback (muscle testing) and cognitive behaviour therapy with a child psychologist. Looking back the most important things that helped were - clean diet (real food not processed) with low oxalate foods, tonsil and adenoid removal, and learning how to "fight" his ocd and "worry brain" with common sense techniques that were given to us by the psychologist. Those techniques continue to be useful to this day, but only when he's not in a flare. When in flare it's too hard - his brain is inflammed and only abx will work. Tamar Chansky's books are helpful in understanding the talk-back techniques. I would also say that learning to re-wire his brain with music lessons also helped. People seem to look at me sideways when I say that but I truly believe it made and continues to make a difference. Another book I recommend is: The Brain's Way of Changing by Norman Doidge. It's been a long journey for us and we understand that our son will always have tics and worry brain issues to some degree, but they can be managed and he is living a great life. He excels at school, has many friends, participates in sports, camps, etc and is very happy about his life.
  5. Yup, so much of this is familiar. our son also very sick from an early age to about 3 years. He also enjoyed being around kids at a young age but struggled to actually interact with them. He did insane amounts of imaginary play. Really, so many similarities. My son's onset was at age 5.5 but it had been building it seems. Things were terrible for about 1.5 years, then he got better but still had issues. He is now 13 and is doing great. There are still tics and the occasional ocd but nothing as horrible as onset. We have a Pandas specialist who treats him with abx when needed. If it's any consolation he has many friends now and is able to interact with them very well. Playing hockey gave him a lot of confidence. He misses face-to-face contact with all his friends right now.
  6. Hi there! I haven't commented in this forum in years? But I read your post and wanted to comment. I'm so glad you have found a supportive GP - that is quite rare as you probably already know. As far as your explanation for the inflammatory procress, I *think* it's correct. It's been a while since I read the science behind the inflammation but what you wrote rings all the bells. A couple of things I wanted to recommend. I feel strongly about the use of some sort of nasal spray to combat the infections that trigger the TH-17 responses in the nasal passages (and ultimately lead to inflammation via BBB). The product we have used, with great results, is XLEAR. I pick it up at the local health store. It acts as a "natural antibiotic" for the nasal passages. It contains, Xylitol, saline and Grapefruit Seed Extract. We have found it invaluable in our home for both preventative measures and treatment. Also, have you considered getting your tonsils and adenoids removed? Good luck! And hope you continue to find answers :)
  7. Hi Bigal, Thank you for the post. How are things going if you don't mind me asking? My son has been wearing a mouthpiece for 1.5 years now. Can you tell me how long your son wore his mouthpiece before he no longer needed to? Thanks.
  8. Dairy Carrie's claim that they are in fact, a supplier to Lifeway is what makes the argument a compelling one. So, she says they supply to Lifeway. Lifeway says they do not. He said/she said? I just wonder why such a claim (on Dairy Carrie's) part would even exist? What benefit could she possibly have? The benefit to Lifeway denying it is certainly clear.
  9. I was thinking about adding a soil-based probiotic to our probiotic rotation, however, not so sure now after reading this article. http://www.kitchenstewardship.com/2012/06/21/are-your-supplements-turning-into-deadly-pathogens-in-the-gut/ It seems that it is great if you generally have a good gut environment; but potentially dangerous if you have gut dysbiosis. And, my Son definitely has that! Does anyone else have this concern, or testimonials to its effectiveness/non-effectiveness? I think many of us, or our children, may have some form of gut dysbiosis on this board so just wondering.
  10. Just found this on a post by Mommypotamus: http://dairycarrie.com/2014/10/06/lifewaykefir/
  11. Undigested food in stool is a clear indication of leaky gut.
  12. I've heard that Olive Leaf Extract is good for the immune system and can help with viruses (not sure how though). I had to read up on the benefits of Oil of Oregano and so far I see that it is good for parasites and bacteria - can be a replacement for antibiotics. Hmmm, does this mean that I shouldn't take oil of oregano AND antibiotics?
  13. Getting vaccinated is a personal choice and it needs to be based on what you think is best for your own child; obviously a parent is going to prioritize her/his own child above the potential future welfare of other people. I'm sure Thundersweet chose to include that information about vaccinations in order to get informed responses, not to be judged. Thundersweet, we use Ultimate Flora (50 billion) but a word of caution: start slowly! Sprinkle just a bit in his drink/smoothie and then add a bit more everyday. Look for rashes on the body, which may be a good thing (herxing from bad bacteria die-off). Try giving epsom salt baths to help with detox too. Another word of caution: start with small amount of epsom salt and work up. Some kids have a sulfur intolerance and epsom salt baths are really magnesium sulfate (hence contain sulfur). Consider also oral magnesium (citrate form is probably the best) - check chemar's signature for "treatments that have helped my son" and you will see all the recommendations.
  14. I would try to avoid sedation as much as possible. A lot of people with methylation problems (many here suffer from) don't do well with the epinephrine that is often used with the gas. Also, there have been issues with nitrous oxide (laughing gas) too, although my understanding is that nitrous oxide isn't often used anymore. You may want to ask what specifically is used. Nitrous oxide and methylation: http://www.psychologytoday.com/blog/health-matters/201209/laughing-gas-nitrous-oxide-is-no-laughing-matter
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