Alex

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

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

Looks like the most frequent guess of the reader replies is Porphyria.

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.

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

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

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

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

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

Hi all, I am a new member here. I have been reading the posts for a couple of weeks and have learned at great deal about PANDAS and felt that it was not fair to gain so much from the discussions without adding our own story. My son was 9 years, 8 months old in early April when he developed a fever/sore throat that persisted for five days. Did the quick strep test and it came up negative. On the fifth day of the fever, my son, who up to that point would maybe urinated three times a day, began going approx twice per hour and would wake frequently at night to go. He also began having a frequent dry cough, that a psychiatrist later identified as a TIC. Additionally he started having extreme reactions to minor issues. An example was a half hour crying and screaming fit over being asked to put his book down while at the dinner table. These behaviors continued for over a month with no other symptoms that we were aware of. About a month later, on the weekend of May 9, 10 we noticed a few odd checking behaviors but didn't think much. On the night of May 11 he went into the bathroom before bed and spent the next twenty minutes lifting the toilet lid and staring into the toilet over and over, looking down drains, behind shower curtain, looking up and down the trim on the doors, etc. Also got out of bed repeatedly to rub his bedpost, look behind bed, etc. He did this four more times that night when he woke to urinate. We brought him to our pediatrician the next day. To what we realize now is her great credit, she took note of the fever/sore throat the previous month and said she suspected PANDAS. She had blood drawn for the ASO test which when it came back a few days later, showed elevated antibodies indicating a recent strep infection. She also put him on a five day course of Zithromax. My son showed marked improvement after three days but still had some symptoms. On the 8th day after starting Zith, three days after stopping, the behaviors returned full force. The Pediatrician put him on Cefdinir, 7ml once per day of the 250mg/5ml solution. So he is getting about 350 mg of the Cefdinr per day. He has shown improvement but still doing some checking before bed and when he wakes up at night, and is still urinating and coughing at the same level. While this was going on we had an appt with a Pediatric Psychiatrist who believes in PANDAS and used to have an office next to Dr. Sweedo. Although she believes in PANDAS, she follows the NIMH guidelines, a course of antibiotics if the child tests positive for strep along with Cognitive Behavior Therapy, and possible psych meds if things don't improve. We had a great conversation with Beth Maloney, the women who wrote a book called "Saving Sammy", which is coming out this fall ,about her sons battle with PANDAS. Her website is www.savingsammy.net if interested. Sounds like he went undiagnosed for several years. When diagnosed he was prescribed a high dose of Augmentin for a month with a continuing lower dose after that. I believe he was post puberty when he took the Augmentin. I believe he had a few ups and downs after, but is now, according to Beth, 100% recovered, no OCD or TICS and is starting college in the Fall. We made an appt with the psychiatrist who treated her son, an OCD specialist out of Mass General named Dr. Geller, who also has endorsed her book, which makes me assume that he agrees with the treatment Beth describes in the book. He is only excepting patients in his private practice which isn't cheap and doesn't do insurance. You do get a receipt for payment which shows the diagnosis codes and we believe our insurance, military, is going to cover. So far all we have done is a phone interview with one of his assistants. He is supposed to get back to us soon to schedule an appt. I have also touched base with Dr. K out of Web Pediatrics in Illinois. In our correspondence he said he believes that antibiotics are a short term fix at best and that if it is PANDAS than IVIG is the way to go. Going to set up a phone consultation with him ASAP. That's all I can think of right now. My questions to you all going forward are these. Has anybody had any luck with Cefdinir? I here a lot about Zithromax but not much about Cefdinir. Also, with IVIG, Dr. K's website claims that it is a cure for many/most but in reading the posts here I see a lot of mixed results. Anybody know the statistics? Thank you all in advance. Alex