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Anxiety Community
This patient support community is for discussions relating to generalized anxiety, anxiety and eating, anxiety and sleeping, mood swings, and phobias.
PANDAS. Just wondering how rare my anxiety condition is...does anyone else have it?
by Treasuresgirl, May 21, 2007 12:00AM
When I was in kindergarten, I got strep for what seemed the first time. I immidiatly started acting paranoid and extreemly anxious and ocd. i wouldnt eat the food my mom cooked cus i thought it was poisoned. i wouldnt sleep alone cus i thought someone would kill me with ciggaretts (hey, i was in kindergarten ok?) and i washed my hands every 5 minutes because i had just learned about germs on bill nye the science guy and i was scared i could die from the germs on my hands. I would walk around with my hands in the air and I wouldnt touch anything cus of the germs. i remeber crying. ALOT. My parents were worried about my anxiety and my "worries" as they called them and they took me to so many doctors. so many. finnally, one doctor diagnosed me with PANDAS. Piediatric Autoimmune Nuerosphycotic Dissorder Associated with Strep. I was put on ammoxicillion and prozac for life. Its really rare, like 1 in a million or something...i havent gotten strep since. but i have had other anxiety/ocd issues. when i was in 6th grade, I ran out of meds on vacation. I couldnt sleep. at all. i would try to sleep, think so hard about falling asleep that i couldnt. my doctor told me that every time i get off the meds, my body finds something new that seems reasonable to me to be anxious about. in kindergarten it was germs, in 6th grade it was sleep.
So anyways i dont get it much anymore. but i do have routines every night that if i dont do, i get kinda anxious, but i can live if i dont do them.
just wondering if there is anyone out there who is a pandas patient. your symptoms might be totally different but i just wanna know...im 15 now
So anyways i dont get it much anymore. but i do have routines every night that if i dont do, i get kinda anxious, but i can live if i dont do them.
just wondering if there is anyone out there who is a pandas patient. your symptoms might be totally different but i just wanna know...im 15 now
Post Comment
"They usually have dramatic, "overnight" onset of symptoms, shortly after or during strep"
i would get it checked out...but chances are its not...i would guess its more likely just anxiety that happened...then again im no doctor, it possibly could be
http://intramural.nimh.nih.gov/pdn/web.htm
By definition, the disorder is pediatric. This doesn't necessarily mean that adults don't have a syndrome of their own which is similar (they can) but the onset, diagnosis and treatment of PANDAS, as such, has a pediatric orientation. Some important facts I picked up from the web site:
There is no test for PANDAS. It is a "clinical" diagnosis, meaning the determination is based on a set of criteria (see the website).
I saw nothing that said once you have it, you have it as an active condition for life. But that's probably because of the way the disorder works: the strep slaps your bodies defenses which mistakenly interact with parts of the brain and bingo! you get the anxiety, OCD acting up. I take from this that if you never get strep. (or something close to it) again, you may not get the anxiety side-effects, either. THAT'S JUST WHAT I GET from what I read and is not a qualified medical opinion. What WAS more clear to me was that if you DO get strep, brace yourself for the anxiety part because it almost certainly is going to happen.
Also, it is certainly possible that there are other issues which manifest in axiety/OCD, etc. apart from the PANDAS and if any exist, they should be treated. It would make sense, I beleive that the PANDAS experience in and of itself would make most people pretty edgy.
TG, I hope you will become a member of this forum and a frequent participant. I don't know how many folks suffer from PANDAS, but I'll be there is a substantial population of those who have it and have not YET been properly diagnosed.
I also note from your post that you have a routine you employ to help deal with the situation, so you are, evidently really quite an "expert" when it comes to living with PANDAS. You know both sides: having it -and DEALING with it.
The information I have on this disorder comes from the National Instittutes of Mental Health. I encourage you (if you have not already done so) to contact them about enrolling in any studies planned or currently underway. And I encourage you to monitor this forum with a keen eye for any younsgters who may have it -and not know it. We do not diagnose anyone here -that's for the doctors- but we can suggest people ask their medical providers to consider possibilities. Otherwise, TG, would you mind becoming our resident "expert" on the subject. With your parent's and doctor's approval and support, please consider contacting the NIMH and such other agencies as are working on it. I feel certain that at least one of them will know about local support groups and all may be able to give you reliable information about treatment, research, etc. I realize you are just 15 years old, but from the way you express yourself, you have an alert mind and the ability to communicate clearly. I think you will be a very valuable member of this community.
This is a very important post, for a number of reasons and I encourage everyone who reads it to send a message to their freinds asking them to read it as well.
First of all, as I and many others will report, the most effective and commonly applied strategy to deal with panic and anxiety is medication to calm you down, and then a course of therapy to root out the thoughts and ideas that bring it on in the first place. Ideally, once that is done, you don't need medication anymore. Such was my situation- such it was for many others. HOWEVER, there are situations where the prime mover behind panic/anxiety and the related family of disorders has an organic, physical and/or pathological basis. Long story short -the wiring or chemistry is messed up somehow and it has little to do with (or is in addition to) exposure to "bad stuff." For these folks, the medication is or may be the ONLY way to deal with it.
But beware! The fact that any of us may have symptoms of physical problems (like strep) DOES NOT automatically mean that our particular condition is the same as hers.
Second, for those of you who resist all the tests looking for physical causes or contributory conditions -and for all who are embarrassed at all the tests that they have taken, think again. Yes, most of the time you're "normal." Much as we sometimes hope to find some gremlin that can be surgically removed or chemically altered, test results that show "normal" aren't really bad news because it is as important to know what it ain't as well as what it is. Imagine the consequences if TG had NOT been properly diagnosed.
Third, with all due respect (and much respect is due) for the medical community, not all providers are alike and some are more attuned to the issues of anxiety/panic than others. The "MD" after a name refers to a college degree and implies nothing at all about suitability for YOU. Therefore, choose wisely, and keep choosing until you get the right one for YOU. Where would TG be without the "right people?"
Finally, if you see anyone here (or anywhere at all) who seems to fit TG's profile, you might want to mention the relationship between strep. conditions and OCD and related disorders as something that should be investiogated and hopefully, ruled out.
The information imparted by TG and the responses to it are an example of this forum at its very best. We all get better and closer to health because of it.