hawks Posted February 24, 2012 Report Posted February 24, 2012 Here's another article that was on MSN's website. http://todayhealth.today.msnbc.msn.com/_news/2012/02/24/10490105-sudden-ocd-in-kids-culprit-may-be-strep-throat-other-infections?chromedomain=vitals
thereishope Posted February 24, 2012 Report Posted February 24, 2012 (edited) . Edited September 30, 2019 by Vickie
MMWG Posted February 24, 2012 Report Posted February 24, 2012 This is the first I have heard about the "if you it gets triggered 3 times, it become chronic"...I totally believe it, but i had not heard anyone be that specific before.
Fixit Posted February 24, 2012 Report Posted February 24, 2012 This is the first I have heard about the "if you it gets triggered 3 times, it become chronic"...I totally believe it, but i had not heard anyone be that specific before. i like this report alot better than the paper yes and i do agree that at some point it does become chronic and i like the idea that she gives a number but it could be higher maybe something like 3-8 times. I want all reading to know that my ds12 had complete remission 15 times with only a standard 10day course. Now with more info i would have kept him on the abx 2 weeks the first time or 2. After that, do at least a month. Correction ...if it is a neurological reaction i would make the first course at least one month. I just wonder if we ever fully eradicted a couple of the episodes that were 3 months apart. Parents don't let the number 3 scare you, but i would do everything in my power not to let a second episode happen!!! i also like the last statement “You have a treatable and perhaps preventable form of mental illness,” she said. “While we’re debating, these kids could be being treated.”
Tracie Posted February 24, 2012 Report Posted February 24, 2012 Ok the #3 just scared me... we were on #3 with IVIG #2 But she is doing good .. So everyday her brain heals the better off we are.. I hope Tracie
nicklemama Posted February 24, 2012 Report Posted February 24, 2012 I can't worry about the 3 now. They all happened before he was diagnosed. I believe my DS is chronic. IVIG helped tremendously and I plan to keep him on prophy abx for years.
T_Mom Posted February 24, 2012 Report Posted February 24, 2012 (edited) re: the reference to "3" episodes and it becomes chronic... Most of our kids have had numerous blips, up-ticks in symptoms, do each of those qualify as an "episode" ? The nature of the beast of PANS IS that it IS episodic, and kids can flare with simple exposure to illness in others--time and time again. I would read that with a grain of salt -- just my advice. I think the take away message is to promptly and effectively TREAT the symptoms with medically researched approaches to PANDAS/PANS -- as noted on the updated NIH webpage!! ____________________________________________________________________ We all know that left untreated, our kids lose years of their lives to this illness -- and the horrid behaviors/habits/compulsions can, of course, become "chronic"...thru habituation if nothing else. -- don't take that as '3 strikes and you are out', however! Rather, I think the message is to use effective, medical treatments for PANS/PANDAS and beyond that to use targeted therapies, and quickly, as needed, time and again. Edited February 25, 2012 by T.Mom
Joan Pandas Mom Posted February 25, 2012 Report Posted February 25, 2012 I noticed that too. Don't let the "3 times become chronic" scare you. My son's PANDAS did become chronic for many, many years. He suffered 7 years with it. After 8 IVIG's, 2 years now on abx., intensive CBT treatment, he is doing great! He was completely incapacitated with it last year.
hawks Posted February 26, 2012 Author Report Posted February 26, 2012 Joan - We have been working for a year now to get our DS15 out of the horrible 2nd exacerbation that started over a year ago. My son has made improvements from antibotics but still unable to attend school. The OCD rules. He wasn't able to finish the 3 week intensive program because the therpy was too much for him at the time - we are 10.5 weeks post #1 IVIG. Seeing ups and downs. Did insurance cover the ivig's and how far apart did you do them. I am glad you posted - I was wondering about your son. Thanks, Angie
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