looneymom Posted September 21, 2013 Report Share Posted September 21, 2013 Just wanted to share some articles about PANDAS in adults. I've tried to paste them but for some reason, my computer won't. Both articles are written by Dr. Jory Goodman. He is a psychiatrist with thirty years of clinical experience. I have been doing some research on this area to find out about treatments available for PANDAS. I was amazed by the number of patients this doctor has treated and the symptoms they were having. Some of the symptoms were related to POTS issues. The first article I read was called Evil PANDAS, PART II Adult Affliction & Treatment and the second article was called Beverly Hills Shrink Adult PANDAS: Bare Facts. The last article is actually part I. I was able to google the name of the articles and they came up for me online. What caught my attention the most was the symptoms of patients that he treated in the first article. Some of these patients had lived with these symptoms all their lives and no doctor had caught on to the fact that maybe a virus or strep infection in childhood was responsible for the illness. Just thought the articles might help someone looking for answers. I still have not heard on my son test for PANDAS yet but should be hearing something any time.Rachel Quote Link to comment Share on other sites More sharing options...
Racer Posted September 21, 2013 Report Share Posted September 21, 2013 Wow, interesting!I first learned about PANDAS many years ago in the autism community. A couple of the parents were getting help for there kids. PANDAS was something new, treatment was highly experimental, and help was only given to severe cases.It is nice to see that they have made much progress on research into it. It is nice to see they are including research of pandas in adults. I have had trouble with OCD and motor tics, but that is the case for many people with aspergers. I get much help from magnesiumGood luck with your sons test results Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted September 21, 2013 Report Share Posted September 21, 2013 Rachel, here are the links to the 2 articles you tried posting:http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment Evil P.A.N.D.A.S., Part II: Adult Affliction & Treatmenthttp://beverlyhillsshrink.blogspot.ca/2012/03/adult-pandas-bare-facts.html Adult PANDAS: Bare FactsI hope this helps.Alex Quote Link to comment Share on other sites More sharing options...
looneymom Posted September 21, 2013 Author Report Share Posted September 21, 2013 Thanks Alex. I feel so bad for anyone that has been suffering with an illness since they were a young child. I was hoping these articles might provide an answer for someone on the forum.Rachel Quote Link to comment Share on other sites More sharing options...
Racer Posted September 22, 2013 Report Share Posted September 22, 2013 Rachel, does your son get better or notice any difference when on antibiotics?Usually when I am on antibiotics my ocd and tics go away, and my anxiety greatly improves. Although my muscle control and speech greatly decrease, and my thinking slows. The same thing usually happens when I have had fevers.I am not saying that I think I have pandas or anything, just a observation Quote Link to comment Share on other sites More sharing options...
looneymom Posted September 22, 2013 Author Report Share Posted September 22, 2013 Yes, racer there is some improvement but it does not last for long. Before my son was diagnosed with POTS, he had walking pneumonia. Some blood test were done about a month later and a Mycoplasma titer showed up out of range. Our doctors our very suspicious that PANDAS may be the cause of his POTS. However the tics started out of the blue 6 months before after a sore throat and inflamed tonsils episode. He was tested for strep though a rapid strep but it never showed up. I really think his tic started earlier because I was told it was a allergy cough for several years by several different doctors. I gave him cough syrup and it helped for awhile. Some cough syrups will help but the effect eventually wears off. As I think back over the last several years of his life, I'm wondering if PANDAS is the cause. However the test that I am waiting on should be able to confirm this diagnosis.Rachel Quote Link to comment Share on other sites More sharing options...
looneymom Posted October 25, 2013 Author Report Share Posted October 25, 2013 MargiebeeHere is the post and some interesting articles you might want to read. Hope this helps and that you are able to get to a doctor that can help.Rachel Quote Link to comment Share on other sites More sharing options...
margiebee Posted October 25, 2013 Report Share Posted October 25, 2013 Thank you! This is very interesting and helpful Quote Link to comment Share on other sites More sharing options...
doggus Posted October 25, 2013 Report Share Posted October 25, 2013 Very interesting.Racer - you said you felt better with a fever. I know exactly what you mean - psychologically i am much better when I have flu - all my OCD and anxiety disappreas. My doctor suggested that this was because I was focussing on the illness but the OCD wanes even before I KNOW I am ill! Quote Link to comment Share on other sites More sharing options...
Racer Posted October 26, 2013 Report Share Posted October 26, 2013 Racer - you said you felt better with a fever. I know exactly what you mean - psychologically i am much better when I have flu - all my OCD and anxiety disappreas. My doctor suggested that this was because I was focussing on the illness but the OCD wanes even before I KNOW I am ill!Yeah, I know I am getting sick when my tics, ocd and that nervous energy goes away. That amazing calm tranquil feeling must be what normal feels like? It seems like in the minds of most doctors you cant mix psych issues and physical illness, it is like trying to mix water and oil. Luckily some amazing doctors are starting to bring down the barriers to legitimate medical treatments. Quote Link to comment Share on other sites More sharing options...
looneymom Posted October 26, 2013 Author Report Share Posted October 26, 2013 Hello EveryoneTyler has an appointment to go see Dr. Cunningham this coming Tuesday. She is in charge of a PANDAS study for kids. She is taking Tyler into her study and will be running some more test Tuesday. I can't wait to meet her. I have put together a medical timeline with all the labs that I have on Tyler. Tyler's vocal tics were diagnosed back in 2010. Every time Tyler has an elevated white blood count, he goes down quickly. If this is not PANDAS, it's got to be something immune related. Hopefully we're getting closer to an underlying diagnosis.BTW Racer, Do you get ear infections? Tyler's vocal tics get much worse. Do your tics flare with some illnesses or do they always get better?Rachel Quote Link to comment Share on other sites More sharing options...
looneymom Posted October 26, 2013 Author Report Share Posted October 26, 2013 http://www.autismcanada.org/conference/pdfs/presentations/Smith_PANDAS.pdfHere is another article you might be interested in. It has other research mentioned by other doctors about PANDAS.Rachel Quote Link to comment Share on other sites More sharing options...
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