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Alex

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  1. Hi, There is a psychiatrist who treats adult PANDAS who posts on the Psychology Today website. He has a few articles on the subject. I'll post links below. Very interesting and heart wrenching comments from PANDAS suffererers and parents as well. He also submitted a journal article on adult PANDAS. Link to that below too. Good luck! Alex https://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment https://www.psychologytoday.com/blog/attention-please/201203/pandas-patients-parents-and-physicians https://www.psychologytoday.com/blog/attention-please/201501/adult-pandas-seek-and-ye-shall-find https://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain https://www.psychologytoday.com/blog/attention-please/201203/pandas-patients-parents-and-physicians
  2. From my experience with my son's Cunningham's labs, I'd say these results are of significance. I don't have his results in front of me so am going from memory. My son had the Cunningham panel 3 times. First two times Can K II was around 170 and two of the anti-neuronal antibodies were above normal. Flash forward 3 years and Cam K II was 105 with all anti-neuronals in normal range but one on the high end of normal. At the time of the first two tests my son was severe PANDAS. By the third test he was greatly but not completely better. So even slightly elevated Cam K II of 105 was of significance. Has your child been treated for PANDAS, or if not is he/she improved from their worst? Maybe CAM K II would have been higher at an earlier date. I'm sure Dr. T will have some great insights into these results and other things. He's great. Good luck
  3. Looks like the most frequent guess of the reader replies is Porphyria.
  4. Could it be PANDAS? Here is the link http://well.blogs.nytimes.com/2014/04/03/think-like-a-doctor-running-in-circles/ Since Dr. Jory Goodman is the diagnosing Psychiatrist in the article, I think ithere is a good chance. Dr. Goodman blogs on Psychology Today about adult PANDAS and has even submitted medical journal articles on the subject.
  5. Hi Eileen and Laura and thanks! Yes, nice to have some good news. And thanks to both for all your wonderful insights over the years. I don't post much but am still on the forum fairly regularly. Kristi, I just wanted to follow up a little. I have spoken with Diana Pohlman fairly frequently since my son's onset. Diana is the woman behind the PANDAS Network website. She would call and check in with us every once in a while because from her perspective, our son was one of the tougher cases. So hopefully it won't take so long for your son to make some decent progress. I think it is great that your immunologist ran the Cunningham labs. Hopefully there has been some real true progress in belief in PANDAS in the medical community. At the conference I mentioned, one of the speakers was Dr. Jolan Walter, the head of pediatric immunology at Mass General, one of the most prestigious hospitals in the world. She treats PANDAS with IVIG and in her presentation put up a slide that showed the improvement in YBOCS scores in her PANDAS patients after IVIG. If you could get your immunologist to correspond with her it would probably go a long ways toward convincing your immunologist to treat aggressively and how to go about it. I'm sure you are learning a lot quickly about PANDAS/PANS so this may not be of much value, but there are other known triggers for PANS including mycoplasma pneumonia worth testing for. Good luck, Alex
  6. Hi Kristi, To answer your question, yes, we ran the Cunningham panel on my son last summer. His results came back as unlikely. This was the third time we had the tests run for him. The first two times were back when it was still a research study. The first time was in the fall of 2009 about two months after he had Plasma exchange, had been on antibiotics for 4 months and had just completed a two week prednisone taper. I don't have the results with me because we are traveling for the holidays but I know that all four anti-neuronal antibodies were above normal with Tubulin the highest, and Cam Kinase II of 174. Would have been in the 'Highly Likely' range If they were doing that back then. Also, I'd bet that his results would have been similar to your son's if he'd had them done prior to PEX/steroids. Fall of 2010 we ran them again after another year on antibiotics and several IVIG treatments. Results were a little better, but not much. Antibody levels had come down a little and Cam Kinase II at 169. Fast forward to June, 2013. Our son's PANDAS now much improved, but still flaring with illness. In the almost 3 years since the last test, he had been on antibiotics pretty much continuously and had his tonsils removed 2 summers prior. He had also had a couple more IVIG's, but none since his tonsils came out. The Cunningham results now showed all 4 anti-neuronals in the normal range(Tubulin on the high end of normal) and Cam Kinase II of 106, and with an 'Unlikey PANDAS' result. Great, great news and pretty much matching our perception, although I didn't think he was as improved as the test indicated. Also, my son's Strep titres have come down slowly over the years, sort of correlating with his improvements. I wish I could say he was completely PANDAS free but he does still get some symptoms when he is ill. Head colds cause him to become withdrawn and very easily angered, and rarely he gets an uptick in OCD and separation anxiety, but night and day from his initial onset and from the first and second times he had Cunningham panel. My son is immune deficient and qualifies for IVIG for that reason, but he hasn't had one in over three years because we have been thinking of it as a PANDAS treatment. But whenever he would flare and we would set things in motion for him to get IVIG things would settle down before the infusion date and we would cancel. Problem is he gets a lot of colds and stomach bugs so doesn't get a chance between flares to really hit his stride. As a result, we may begin some regular IVIG's for a while. We can't be sure exactly why he is better. Maybe just time. Maybe getting the tonsils out. Maybe slow healing from the damage caused by the initial onset. Maybe IVIG's. He still has a tough time when he flares, as does the rest of the family due to his anger, but overall good news and still getting better. He won the 8th grade spelling bee recently and says his math class is way too easy after struggling with math for years. He has a great sense of humor and is excited about his future. p.s. At the recent North East PANDAS conference, I asked Sue Swedo if they have followed the first 50 cases that she wrote the paper about. She said they have kept track of them and that they are doing great. I wanted her to elaborate but she was swamped with other parents. Alex
  7. Hi Shields, I've posted the links below on here before. They are by a psychiatrist who treats adult PANDAS. There are two articles from the 'Psychology Today' website and a proposed medical Journal article. He is a big believer in Tonsillectomy. The reader comments to the articles are also interesting. Good luck. Alex http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment http://beverlyhillsshrink.blogspot.com/2012/03/adult-pandas-bare-facts.html
  8. Another thing to consider would be Tonsillectomy/Adenoidectomy. Below are a few links to articles by a psychiatrist who treats adult PANS with T & A surgery. http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment http://www.psychologytoday.com/blog/attention-please/201203/pandas-patients-parents-and-physicians-0 Best of luck, Alex
  9. Wombat, glad to hear about your appointment. The same psychiatrist who wrote the articles about tonsillectomy submitted a paper to a medical journal concerning adult PANDAS. Apparently the paper was rejected by the journal, so I am not sure how good it is. However, he posted it on his website and it specifically addresses his experiences treating adults with PANDAS. Definitely worth a read and maybe something to take to your appointment. The link is below. Good luck, Alex http://beverlyhillsshrink.blogspot.com/2012/03/adult-pandas-bare-facts.html
  10. Here are links to a couple of articles by a psychiatrist that claims good success treating adult PANDAS with tonsillectomy. The reader comments to the articles are interesting as well. http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain Good luck, Alex
  11. My son seems to have benefited from tonsillectomy. Since having them removed 11 months ago, he has improved significantly. He still flares with illness, but when he is healthy, he gets to a much better state then he ever got to prior to surgery. Also, his strep titers declined in the months following the surgery by 25%. That may not sound like that much, but they had remained rock steady through 2 1/2 years of agressive PANDAS treatments, PEX, mulitple IVIG's and constant antibioitics of various types. I graphed all his strep titer tests over the last three years and the drop after tonsillectomy is pronounced, and coincided with his improvements. He hasn't had his titers checked in a few months so we are hoping they continue to fall. But it is defintiely no cure for PANDAS. As we have seen with my son, he still has the faulty immune response to illness and may always have it. Maybe we just removed a source of chonic immune response.
  12. For my son, loose teeth coincided with PANDAS flares seemingly every single time. For his last few baby teeth, we had the dentist pull them as soon as they were the slightest bit loose. I'm not sure he was completely onboard with the connection between loose teeth and neurological symptoms, but he agreed to do it, and that is all we cared about. Prior to getting the tooth pulled, we would give an extra dose of antibiotics and there didn't seem to be any negative consequences.
  13. Jill, So incredibly happy to read your post! A great reminder to us all that this disorder isn't a life sentience for our children. By not giving up and continuing to fight for your daughter, you have given her a great gift, the chance to lead the life she was meant to have. In doing so, I'm sure you have paved the way for many others as well. I still check in on the forum often and always appreciate your informed and compassionate posts, although this one is certainly my favorite. Kudos to you, and your daughter! Alex
  14. Hi Worried Dad, I could be wrong, but I'm pretty sure Augmentin XR only comes in 1000mg tablets. If it is a 500 mg tablet, then I don't think it is extended release.
  15. There was an adult woman who posted on here last week about the dissapearance of her OCD after tonsillectomy. Here is the link. http://www.latitudes.org/forums/index.php?showtopic=16392 I'm suprised it didn't get more attention then it did. Here is a link to two articles by a psychiatrist who treats PANDAS, including adult PANDAS, with tonsillecomy/adenoidectomy. Some interesting reader comments to the second link as well. http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain The psychiatrist recently did a couple of video blogs on PANDAS as well. Here is a link to the most recent. http://beverlyhillsshrink.blogspot.com/search?updated-min=2012-01-01T00:00:00-08:00&updated-max=2013-01-01T00:00:00-08:00&max-results=1 I think there is enough evidence to at least explore the tonsillectomy approach for any adult with OCD, especially if there is a history of strep.
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