Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School
Before I share our similar story with my son, I?d like to really commend these girls on their courage in coming forward. My thoughts and prayers go out to them and their families. Also, I will start by telling you that our story has a good ending with 100% recovery.
My son, 9 at the time, started his symptoms in November of 2010 (a little over a year ago). The symptoms started 2 weeks after his Flu shot (actually he got the nasal mist). I remain suspicious that this was the instigator in our case, but we never were able to confirm it. I wonder if the girls in NY had Flu shots possibly from the same source around the same time? Would make sense given they all started their symptoms in October (Flu shot season).
What started out we though was viral (cough, stridor) morphed several times during the course of his illness. Most disturbing were the acute chest pains which were seemingly random and twitch-like and then came the near complete paralysis of his legs. Over the period of three weeks we were in and out of ER visits and tested everything. After all tested clear, the diagnosis turned to conversion disorder. I did a lot of reading on this and had a hard time dismissing organic causes. A top Pediatric Neurologist @ UCSF saw my son and ruled out things like Guillain-Barre syndrome, but also let me know that there had been some strange reactions reported with regard to the Flu shot ? so I still remain suspicious of this. What I also found is that conversion disorders are often triggered by organic causes. So it?s NOT an either/or.
Once it was clear that after all the tests that there was no apparent imminent life threatening known cause, we started to treat this as if it was a conversion reaction. There was really no harm in pursuing this treatment path and there was no logical reason to dismiss this as a possiblity. A big clue for me throughout this scary ordeal was that when he slept, the symptoms went away (no chest pain surges, legs moved when nudged, etc.) . At that point I felt there was enough to signal this had a mind/body neurological component when he was conscious. So we started a combination of pediatric physical therapy and Cognitive Behavioral Therapy (CBT). I wonder if these twitches for the girls in NY subside during their sleep?
At any rate, the first order of business in CBT was to take the spotlight of the symptoms ? treating the symptoms in a more nonchalant ? even normal daily life - way. This was an unnatural act, but after two weeks ? with the spotlight off of all the doctor visits, extreme parental attention and concern, etc. etc.. I can tell you that it started working. It took about four months to go from hints of leg movement (toes), to kneeling, to crutches, etc.. He is now he is 110% and doing fantastic.
In summary, my belief is our situation started with the Flu shot or some strange virus, but then morphed into a conversion reaction probably due to the trauma, stress, and fear of the ER visits. I believe it was all nervous system and neurological and the most effective treatment we pursued was CBT therapy (which also required changes in OUR behavior and OUR reaction to his surges). We did not pursue any medications other than pain killers which didn't seem to help by the way.
I hope our story helps. I?m happy to clarify any points or answer any questions in attempt to help these girls in NY and others.
Before I share our similar story with my son, I?d like to really commend these girls on their courage in coming forward. My thoughts and prayers go out to them and their families. Also, I will start by telling you that our story has a good ending with 100% recovery.
My son, 9 at the time, started his symptoms in November of 2010 (a little over a year ago). The symptoms started 2 weeks after his Flu shot (actually he got the nasal mist). I remain suspicious that this was the instigator in our case, but we never were able to confirm it. I wonder if the girls in NY had Flu shots possibly from the same source around the same time? Would make sense given they all started their symptoms in October (Flu shot season).
What started out we though was viral (cough, stridor) morphed several times during the course of his illness. Most disturbing were the acute chest pains which were seemingly random and twitch-like and then came the near complete paralysis of his legs. Over the period of three weeks we were in and out of ER visits and tested everything. After all tested clear, the diagnosis turned to conversion disorder. I did a lot of reading on this and had a hard time dismissing organic causes. A top Pediatric Neurologist @ UCSF saw my son and ruled out things like Guillain-Barre syndrome, but also let me know that there had been some strange reactions reported with regard to the Flu shot ? so I still remain suspicious of this. What I also found is that conversion disorders are often triggered by organic causes. So it?s NOT an either/or.
Once it was clear that after all the tests that there was no apparent imminent life threatening known cause, we started to treat this as if it was a conversion reaction. There was really no harm in pursuing this treatment path and there was no logical reason to dismiss this as a possiblity. A big clue for me throughout this scary ordeal was that when he slept, the symptoms went away (no chest pain surges, legs moved when nudged, etc.) . At that point I felt there was enough to signal this had a mind/body neurological component when he was conscious. So we started a combination of pediatric physical therapy and Cognitive Behavioral Therapy (CBT). I wonder if these twitches for the girls in NY subside during their sleep?
At any rate, the first order of business in CBT was to take the spotlight of the symptoms ? treating the symptoms in a more nonchalant ? even normal daily life - way. This was an unnatural act, but after two weeks ? with the spotlight off of all the doctor visits, extreme parental attention and concern, etc. etc.. I can tell you that it started working. It took about four months to go from hints of leg movement (toes), to kneeling, to crutches, etc.. He is now he is 110% and doing fantastic.
In summary, my belief is our situation started with the Flu shot or some strange virus, but then morphed into a conversion reaction probably due to the trauma, stress, and fear of the ER visits. I believe it was all nervous system and neurological and the most effective treatment we pursued was CBT therapy (which also required changes in OUR behavior and OUR reaction to his surges). We did not pursue any medications other than pain killers which didn't seem to help by the way.
I hope our story helps. I?m happy to clarify any points or answer any questions in attempt to help these girls in NY and others.
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