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Everything posted by qannie47

  1. Both my kids are on liquid lith by purr encapsulations. I have seen mood stability and focus Improve with both my twins. 1/2 dropper one time daily
  2. I swear by curcumin/turmeric as a anti-inflammatory. It has worked so well for my ds. I finally found one that is not sooo expensive that works as well as the Douglas Lab's one that has been bleeding my pocketbook. It is called Pure Turmerc, and it is 750mg per 2 cap. It also has a pepperdine in it to help with absorption, which is necessary. I tested in on myself to make sure it works, it does! (I have chronic back/neck pain). It relieves my pain 100% around the clock. It is about $35 for 150 capsules as opposed to $45 for 60. What I also like about Turmeric, is that clinical research shows that it is also a natural anti-oxidant and cleans out the liver, a bonus for these kids whom have consumed lots of motrin in their young lives...
  3. Hello hopeinhim, I just read your post. I do not have any info with regards to lyme, however, I just wanted to send you a cyber-hug. I am sure many of the Lyme people here will chime in soon with words of advice and support.... I am sorry that you are going through this. I pray that you and yours find healing answers soon...
  4. Remember that one theory is that these antibodies can stay in the brain for several years...therefor things like stress, colds, etc., can activate these antibodies therefor causing the symptoms...something like that. Also, when my son stopped returning 100% baseline and holding, it was at that time that Dr. K said we needed to do IVIG. Dr. K feels that abx stops working eventually with Pandas kids.
  5. Well, my initial reaction was, nothing knew to be learned here, but one must remember, we are all veterans in what is considered "new science".
  6. I ditto last two comments as well...ptsd seems to be other ugly side to this disorder...did not mean to sound overly pragmatic....and trust me, it can get me down/overwhelmed as well....I just know that when I have let this disorder get the best of me, I am no good to myself or others....
  7. Hi lydia. Been there done that! What worked best for me was switching my perspective. What you dont know is, will she have another flare; you dont have any control over that to some degree unfortunately. What you DO know is that if she does flare, you can and you will handle it. If you think about it, that knowledge is very empowering. It seems that your dd is moving forward and maintaining health. That is great news. Focus on that as well. Pandas has the capacity to take hostage of ones peace of mind...dont give it that much power...all the worry in the world will have no influence on what is yet to be.
  8. That being said, abx from what I know does not cause tics...the steroid, however, can be immediate...the positive results are telling. Cara, while I know how much this disorder can drive us crazy...give things a little more time before rushing to a conclusion. Best Regards, Q
  9. It is the dramatic onset and the improvement with abx that is your big eye opener. My ds first "big" Pandas flare occurred at the same age, typical, and it took 6 weeks to see him return back to his normal baseline. If this is Pandas, Pans, it is likely that you will see that return to baseline close to 100%. Unfortunately, future illness may very well trip off the very same set of symptoms. My experience, and from others in this forum will support that, as well as the well documented clinical research studies conducted. You may be in for a long hall. Research this, there is much to be gleaned these days from the internet. NIMH, Dr. Koursevic. There is a more recent post that is titled, "who knew?" on this forum that will take you to a great collaborative website. When my son was diagnosed, I hit Pandas with everything that was currently available to treat him. First abx, when that eventually fails, (and some believe abx eventually does), we then did IVIG (clinical research shows very positive outcomes), T/A, proflactic amox/clave 250 mg. daily. daily vitamin supplements that include magnesium, Vit D, Vit C, calcium (helps magnesium absorption and vise versa), and high does of curcumin/turmeric as a natural anti-inflammatory. Probiotics..it is important. Find a doctor that your gut tells you that will help you. If they are not listening, move on quickly. Read, read, read. And then read some more. You will discover that you are your child's best advocate. Consider a gluten, dairy free diet. This can help many children. When you try supplements, try ONE at a time for 2 weeks before you decide about adverse side effects. Too many at one time will confuse results. If you get an odd reaction, still give it a little more time before you change...sometimes it takes the body a little time to adjust depending on methylation and you can see one step backwards before forwards...unless it is so over the top... PTSD: Every parent in this forum has experienced this..it is almost a hallmark of the disorder and co-disorders....You will get through this. You will get stronger and more confident. Best regards, Qannie
  10. Try Dr. James Greenblatt. He is a psychiatrist, however, he is also experienced with Pandas and eating disorders. Top Top notch. Top notch and smart. He gets it. He is out of Boston. Call his intake person and they are great. May get you on the phone with him the same day. If you google his name, you will find him easily.
  11. dut.: I have never met you, however, as with many of us...you wrote our story....Can't express how big my smile is.... Thank you for your inspiring update....
  12. You touched on what has always been at the heart of a lot of my stress..... "AM I DOING THE RIGHT THING?" Geez, just saying that raises my blood pressure. Here is one of my "Take aways" that restored some of my sleep. Truly, it is highly unlikely that anything that you do, a decision that you make in the quest to help your child that will result in a irreversible result that can't be undone. In fact, this forum is filled with examples of "oops". I do not think you will find the "irreversible oops". That is the good news... The even better news is that we, the parents of Pans, Pandas children are so well read, so well researched , that we often make better decisions, and if not, we move on and learn from it... Sleep well!!!
  13. I am just so pleased to see that the medical community is starting to accept the idea that the autoimmune system can be connected to neuropsychiatric symptoms..... I am optimistic that as the medical community moves forward, how we treat neuropsychiatric symptoms will be forever changed in many positive ways.
  14. If they "don't support a Pandas diagnosis", and you feel that this is what your child has, it makes sense that this is not the place where you will find the necessary help.
  15. Wonderful article pr40. Btw, you helped me months ago get started on gluten/dairy/egg free. Thank you. My son is doing wonderful. ALL of his symptoms have gone away 100% consistently now since June. Even is sensory issues. Also, my Pandas son, whom I let cheat once in awhile because I did not think he had these issues experienced more emotional stability, and more calm/focus once I decided to make him adhere to the diet 100%. In hindsight, I should not be surprised....
  16. My kid with digestive issues had this from time to time. He turned out to be intolerant of milk/eggs/gluten. The protein in all of these. I would buy some high quality digestive enzymes. Start with that. When the body is not producing lactate enzymes for example, it can cause malabsorption issues.
  17. Pure encapsulation is the one I use. My son weighs 67lbs, and I give him 1/2 dropper full once a day. It has worked extremely well. He is not my Pandas child. He is my son whom has the food intolerance. The liquid orotate seems to have increased his focus and stabilized his mood. No adverse side effects whatsoever.
  18. I like the one with Calcium. The calcium and magnesium need each other for optimal absorption. Also, it has vit D in it as well! FYI: there was a batch made where it does not dissolve well. It should dissolve completely. If you experience an issue, take it back. Puritan Pride is aware of the problem, and are reimbursing stores for an exchange. Good luck!
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