jenbug Posted May 28, 2011 Report Share Posted May 28, 2011 Hello everyone! My name is Jenny and I have had severe OCD (and possible Tourettes) since I was around 8 y/o. My parents rarely took us kids to the doctor so I do not know for sure if I had strep. I think I was only on antibiotics maybe once in high school... however, I did have a lot of sore throats, cough, etc. I have asthma, vitiligo, Raynaud's phenomenon, etc. My oldest daughter has had similar symptoms with the OCD/Tourettes and ADHD since around 6 or 7 years old. Is it possible for an adult to have PANDAS that was never treated properly? I have been on fluvoxamine for 12+ years and it is no longer working well...doc recently added BuSpar. I have had multiple sore throats tghis flu/cold season and my OCD has really been flaring (hence the need for BuSpar imo). I guess I just want to know if adults can still have this disease even past age of 21? I am 33 now and when I first had symptoms I was in about the 4th grade or so. I don't remember specs or if I was ill, but I know that it got better and went away for a few years, came back, went away, then came back REALLY bad when I was in high school.....any advice is appreciated. I live in a very small part of the country...not sure if the docs are too familiar with this here yet, but I did give my primary and my daughter's ped some printed stuff on ocd and pandas.....Anyhow, thanks for reading! Jenny Link to comment Share on other sites More sharing options...
peglem Posted May 28, 2011 Report Share Posted May 28, 2011 I don't think it has been well studied in adults. But, I wonder if you see a rheumatologist for vitiligo and/or Raynaud's? Link to comment Share on other sites More sharing options...
Iowadawn Posted May 28, 2011 Report Share Posted May 28, 2011 Hello everyone! My name is Jenny and I have had severe OCD (and possible Tourettes) since I was around 8 y/o. My parents rarely took us kids to the doctor so I do not know for sure if I had strep. I think I was only on antibiotics maybe once in high school... however, I did have a lot of sore throats, cough, etc. I have asthma, vitiligo, Raynaud's phenomenon, etc. My oldest daughter has had similar symptoms with the OCD/Tourettes and ADHD since around 6 or 7 years old. Is it possible for an adult to have PANDAS that was never treated properly? I have been on fluvoxamine for 12+ years and it is no longer working well...doc recently added BuSpar. I have had multiple sore throats tghis flu/cold season and my OCD has really been flaring (hence the need for BuSpar imo). I guess I just want to know if adults can still have this disease even past age of 21? I am 33 now and when I first had symptoms I was in about the 4th grade or so. I don't remember specs or if I was ill, but I know that it got better and went away for a few years, came back, went away, then came back REALLY bad when I was in high school.....any advice is appreciated. I live in a very small part of the country...not sure if the docs are too familiar with this here yet, but I did give my primary and my daughter's ped some printed stuff on ocd and pandas.....Anyhow, thanks for reading! Jenny Jen- I am glad you found the forum! About where do you live? I'll start with that. Dawn Link to comment Share on other sites More sharing options...
jenbug Posted May 28, 2011 Author Report Share Posted May 28, 2011 Peggy--Thanks that is why it is so hard for me to find info...As far as the rheumatologist, I am not. It hasn't even been suggested. I got the vitiligo on my left leg when I was a kid. Raynaud's too....I recently gave my pcp info on PANDAS, etc, so I hope maybe she can do some sort of testing for me. What kinds of tests can be done to see if you have PANDAS? It might be worth a try even if I am 33 y/o. Dawn--I live in Western Nebraska...I haven't even seen a neurologist--just been taking fluvoxamine (Luvox) for years. Forgot to mention that "It" came back really bad during my first pregnancy and after in the pospartum period and has been there since....it is very obvious when I even skip more than 1 day of meds..I have lived with this condition for so long that I just got content living with it while the meds work. Maybe it is just regular OCD, but I have a gut feeling it isn't. I remember being really really sick one summer when it came back and tapping my toes and counting a lot, so I am starting to wonder. There are also tons of autoimmune stuff in my family. My grandma had some sort of fever, not sure if rheumatic or scarlet, but she was shut in a dark room for a few days and then got heart trouble afterwards. I forgot to mention I also have a mild hypothyroid issue...there is RA and MS on both sides of familly, as well as tons of psych stuff. I also have unexplained very large hives on me pretty much all the time. Sometimes they are so big that they are the size of grapefruits. I know you all are not docs, and I don't expect a cure or anything but I am just excited to see that there is FINALLY some research being done on this horrible disease and that there is hope! Link to comment Share on other sites More sharing options...
peglem Posted May 28, 2011 Report Share Posted May 28, 2011 Peggy--Thanks that is why it is so hard for me to find info...As far as the rheumatologist, I am not. It hasn't even been suggested. I got the vitiligo on my left leg when I was a kid. Raynaud's too....I recently gave my pcp info on PANDAS, etc, so I hope maybe she can do some sort of testing for me. What kinds of tests can be done to see if you have PANDAS? It might be worth a try even if I am 33 y/o. Dawn--I live in Western Nebraska...I haven't even seen a neurologist--just been taking fluvoxamine (Luvox) for years. Forgot to mention that "It" came back really bad during my first pregnancy and after in the pospartum period and has been there since....it is very obvious when I even skip more than 1 day of meds..I have lived with this condition for so long that I just got content living with it while the meds work. Maybe it is just regular OCD, but I have a gut feeling it isn't. I remember being really really sick one summer when it came back and tapping my toes and counting a lot, so I am starting to wonder. There are also tons of autoimmune stuff in my family. My grandma had some sort of fever, not sure if rheumatic or scarlet, but she was shut in a dark room for a few days and then got heart trouble afterwards. I forgot to mention I also have a mild hypothyroid issue...there is RA and MS on both sides of familly, as well as tons of psych stuff. I also have unexplained very large hives on me pretty much all the time. Sometimes they are so big that they are the size of grapefruits. I know you all are not docs, and I don't expect a cure or anything but I am just excited to see that there is FINALLY some research being done on this horrible disease and that there is hope! My thought was that since you have symptoms of other autoimmune disorders, that treatment for them might improve your OCD, if it is also autoimmune in nature. I think you'll have trouble finding any regular adult physicians who will help with PANDAS. If your regular physician is willing to run some tests...I would start with at least an immune panel. Also have them run ASO and antiDnase titers (checking for history of strep), and shoot, may as well get a throat culture for strep. Many PANDAS people have strep w/o typical symptoms. And, as long as they are drawing blood...may as well check for mycoplasma pneumonia and celiacs disease. And if your doc is very cooperative-have a lyme panel done as well. Link to comment Share on other sites More sharing options...
jenbug Posted May 28, 2011 Author Report Share Posted May 28, 2011 THanks soooooo much! I didn't even know where to start. As far as pneumonia...I am not sure that would show, as I am right now on a 10-day course of Levaquin for ear infection, sinus infection, and bronchitis... Link to comment Share on other sites More sharing options...
peglem Posted May 28, 2011 Report Share Posted May 28, 2011 Well, the usual testing is to look for IgG and IgM antibodies to the pathogen. Those survive the bacteria for several weeks, so should still be able to test. Link to comment Share on other sites More sharing options...
EAMom Posted May 28, 2011 Report Share Posted May 28, 2011 I would rec. getting everyone in the household throat cultured (esp. since your oldest dd may also be PANDAS). Also, you might look into adding a glutamate blockers if an SSRI alone isn't helping your symptoms. Here's something from IOCDF http://www.ocfoundation.org/glutamate.aspx and a recent thread: http://www.latitudes.org/forums/index.php?showtopic=13711 Link to comment Share on other sites More sharing options...
EAMom Posted May 28, 2011 Report Share Posted May 28, 2011 (edited) PS here is a thread on adults: http://www.latitudes.org/forums/index.php?showtopic=10544&start=0&p=89000&hl=+turkish%20+study&fromsearch=1entry89000 PS2 there are some moms on this forum that had PANDAS as children, and into adulthood. One mom said her symptoms got better during pregnancy (bronxmom2?). Also, some report that certain types of birth control pills help, other types make things worse. Edited May 28, 2011 by EAMom Link to comment Share on other sites More sharing options...
jenbug Posted May 28, 2011 Author Report Share Posted May 28, 2011 (edited) EA Mom--Thank you very much! My DS had a rapid strep that was positive about a month ago, but the girls were both negative. is that different than a culture? And, who is Dr. K? Thanks again! Edited May 28, 2011 by jenbug Link to comment Share on other sites More sharing options...
EAMom Posted May 29, 2011 Report Share Posted May 29, 2011 (edited) EA Mom--Thank you very much! My DS had a rapid strep that was positive about a month ago, but the girls were both negative. is that different than a culture? And, who is Dr. K? Thanks again! What antibiotic did they put your son on? It would definitely be worthwhile to re-culture everyone ... to make sure your son cleared and that your others are still neg. (checking for carriers). Here is Dr. K's (Kovacevic) website...he's one of the top PANDAS docs (located in Chicago). http://www.webpediatrics.com/pandas.html PS. a rapid isn't techinically a culture, but that is fine to do. Often docs start with a rapid strep test. But if is neg, I would insist on a 72 hour culture. If the rapid is positive, you don't really need to do the 72 hour culture, you can believe the rapid. both tests (rapid and 72 hour culture) are throat swabs Edited May 29, 2011 by EAMom Link to comment Share on other sites More sharing options...
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