Rachel

On Wednesay, Nov. 28 I was able to talk with Dr. Murphy's assistant, Jane Muntch about PANDAS. She confirmed much of what this group has discussed regarding the antibiotics. In addition, they are getting ready to perform studies on omnicef. She forwarded me an article regarding OCD and PANDAS which I will bring up again with the web address for you to read. This department with Dr. Murphy really understands the disease and are actively researching it. Whene symptoms are severe they stress CBT (cognitive behaviorial therapy). How have you managed behaviorial deviations? Two things struck me in our conversation: 1. Other illnesses and possible environmental triggers can trigger the antibody titers causing symptoms even while on antibiotic, 2. PANDAS carries on through adulthood. Which caused me to consider my husband's behaviorial symptoms which coincides with their behaviorial symptoms. Tomorrow we are visiting an MD who also knows homeopathy to see if there is another way besides antibiotics? By the way, in boosting the immune system the group has mentioned probiotics; but, isn't fish oil just as important to calm the intestine? More Later, Rachel

Thank you ONE AND ALL for your insight and support!! I'm sorry I'm not alone but I am glad to be in the same boat with knowledgable, capable and caring moms like you!! Some of my concerns were allivated like "were we wrong to have their tonsils removed" and the answer is nebulous as the disorder itself; other fears of ever getting back to normal were abated about the success story of the preteen who survived PANDAS. And the fact that there is a doctor actively pursuring a greater understanding of PANDAS - yeah, Dr. Murphy is hopeful. She became a doctor after working through Tourett's (I do have a call into her office to try to connect Dr. Murphy to our family physician Dr. Harbor.) One of the most interesting pieces of information was the intensity of PANDAS that it can be extreme and mild and not necessarily go away. Which (prior to getting their tonsils out) WOULD go away after seven days of antibiotic. Currently, I am assessing Sophie (who exhibits more OCD sypmtoms like checking, becoming more clumsy, regressing to baby talk, losing concentration, disinterested in the things that she loves like drawing and singing) and Boone (who exhibits more ADHD sypmtoms like agressive behavior, extremely impulsive, but hyper focused on other things). And, I'm considering the cost-benefit ratio like which antibiotic maintains a more steady effect of symptoms. Soooo, Boone (age 4) is back on Zithromax because his impulsivity on amox. was very difficult to circumvent. Now, I need a sit down with Dr. Harbor and hopefully Dr. Murphy about the effects of long term antibiotic, which is the best to consider for long term ... A primer so to speak of the cost-benefit ratio. Also, one thing that I am considering is homeopathy or acupucture. Has anyone explored these areas for presenting symptoms? Plus, I am trying to be aware of environmental triggers. Upon seeing the psychologist, she was intrigued and very encouraging about trying to understand the effects of PANDAS and encouraged me to read a book by Dr. Stanley Greenspan about "floor time" and engaging them outside of their "episode". She said she would like to see a video of the "worst" behavior, only upon leaving the office did I realize that I barely have time to take family video for prosperity sake. Besides, upon their worst times I am not necessarily "on" myself. So, I am aquainting myself with cognitive behaviorial therapy. Reading Thom Hartmann's the Edison-Gene. Excellent. So, speaking of enduring the behaviorial deviations how have you managed? Like I said, I just recently became educated about PANDAS so I'm explaining now to my friends the intensity of their behavior and WHY I've been elusive. My mother has been especially understanding but other grandparents don't quiet get it. How have y'all kept in tune to the rest of your world? Again, thank you for your patience and insight. So Sincerely, Rachel

Hello, my name is Rachel. I am not well versed with online discusssion boards but I need desparate help. After a year of strep, signaled by behavior - no physical symptoms my daughter Sophie age 6 and my son, Boone age 4 have been diagnosed with PANDAS. They were diagnosed after they already had their tonsils removed. They had had strep 12 times before we were able to consider getting their tonsils removed. I tried to explain the behaviorial sypmtoms to the ENT specialist prior to surgery in fact I said they had strep the day we went to discuss the surgery. However, he did not have a strep swab in his office because he is concerned about the over use of antibiotic. I went to our family doctor who put them on the antibiotic which ended the day before surgery. This was August 22, 2007 and on that day I took my then seven month old to be tested for strep. After Sophie and Boone's tonsils were removed on Aug. 23 we thought we were done. On October 5, 2007 I noticed extreme behavior related to their strep. I didn't take them to the doctor til Oct. 9. They had no sore throat or fever, but after the swab, "You were right mom they do have strep". A week later a friend of mine found an article in in Prevention magazine October 2006 referring to PANDAS and my husband and I referenced the 1998 Susan Swedo article. First, we went to the specialist who was not supportive nor listening to me. I called the National Institutes of Mental Health and talked to clinical social worker in reference to the article my children's behavior. Then, we brought it to our general practitioner who started the next series of antibiotic. We tried amox. first, then ,PEN V, now my daughter is on zithromax (she seems to be responding ) and my son isn't. Now I suggested to my doctor to try him on amox. again so I can observe his sypmtoms without he and his sister antagonizing each other. In the meantime, per the recommendation of the 1998 Am. Journal of Psychology, Swedo article we saw a psychologist for remediation of behavior when they have an exaserbation. But not having any experience working with PANDAS she said I would be educating people about their disorder and recommended a book by Dr. Stanley Greenspan about "floor time". Then, she said this is a medical issue that has to be treated with antibiotic. When they had their tonsils I noticed an allievation of symptoms seven days after being on antibiotic. The antibiotic would end and within days symptoms would reappear. Now, since tonsils have been removed I am witnessing an ebb and flow of symptoms while constantly being on antibiotic. And, we are trying to find the right antibiotic. My doctor said if I can find an doctor that has treated PANDAS please let her know. Yes, we are taking fish oil, probiotic and an multivitamin. Right now, I'm considering the Feingold diet. I"m homeschooling and trying to figure out a routine in the midst of on-demand-living and behaviorial management. Any suggestions, love, and support? Thank you !!! (Emailing from library home computer on the mend - ugh.)