I agree, awareness is key. Dr. Jenike and all the wonderful people at the International OCD Founation (www.ocfoundation.org) are the best resources. Through this group, we finally found the right help for our child who was suffering severely with "garden-variety" OCD but we had many disagreements with doctors and therapists locally before we found the best treatment for our son (high praise for the Child and Adolescent Center at Rogers Memorial Hospital in Wisconsin). Hence, I was not at all surprised to read that children with PANDAS OCD have been misdiagnosed and mistreated in the Boston area as well. Tragically, not only PANDAS OCD but all OCD is misunderstood by too many health care professionals, and too many children are suffering because of this.
Thank you, Neil Swidey, for writing about this silent epidemic. Our family took a similar journey to your nephew's, though, unfortunately it involved more pysch meds and despair prior to the diagnosis of PANDAS for our beautiful daughter. I cannot stress enough, how important awareness of this type is, because it was not the medical professionals that thought to test her for PANDAS, it was I. And had it not been for another PANDAS parent reading about my daughter on a friend's blog, I wouldn't have learned of PANDAS. I know that you are aware, that by writing this article, and by The Globe publishing it, you may well have saved the mental and emotional lives of a number of children. How many parents will read this and realize that their child is not in need of psych meds, but rather, antibiotics? God Bless You for helping even one kid through this. I'm confident the numbers are far great than that. Oh, and I should also mention that there are plenty of doctors at MGH that don't just claim to treat children with PANDAS/PANS, but really do. PARENTS, START THERE. Or, if you don't live in MA, go to: http://www.pandasresourcenetwork.org or http://savingsammy.net/providers.php
The real story here is the utter disdain and contempt for parents shown by *some* of the doctors at Boston Children's Hosp. They are so certain that they are right that they will dig in their heels and continue doing the wrong thing long after it is obviously, shockingly counterproductive. Parents who protest get threatened by social workers. To this day, my son's doctors have not reported the life-threatening side effects he experienced with IVIG, insisting that they were not related. Doctors refuse to believe anything that contradicts the established literature, even when the evidence is right before their eyes. But by refusing to believe rare situations exist, and by refusing to report rare situations, they just perpetuate the cycle of denial: If it isn't in the literature, it isn't true. To the parents who are waiting for IVIG approval: If your child gets worse a few weeks or months into IVIG, stop the treatment. It is a miracle for some people, but not for everyone, and 30-minute-long seizures should probably be listed alongside "headaches" and "nausea" as rare but possible side effects.
Thank you Neil Swidey and The Boston Globe for raising awareness of a very real and very devastating illness. If one has not experienced it first hand, it is nearly impossible to understand. One day a child could be a straight A student, play sports, music, etc. and the next, have anxiety, tics, OCD, and decline/regression in academic skills so severe that the child can no longer function properly. Forget how to spell, can't do math or write anymore. Very scary! Very real! Not a behavioral issue. Not a psychiatric issue. It is a medical issue with a variety of possible infectious causes that present as psychiatric symptoms. Clear the infection, clear the symptoms. Standard medications for regular OCD, tic, and anxiety are not the appropriate treatment for these children. In most cases, the child's symptoms are made worse with anti-psychiotics/antidepressants/SSRIs. Thank you again for helping the public to understand PANDAS/PANS.
Comments
Thank you writing this article. Awareness is most important. Please take a moment to watch this short PSA by Dr Jenike:http://www.youtube.com/watch?feature=player_embedded&v=qDuxlDWMgso
I agree, awareness is key. Dr. Jenike and all the wonderful people at the International OCD Founation (www.ocfoundation.org) are the best resources. Through this group, we finally found the right help for our child who was suffering severely with "garden-variety" OCD but we had many disagreements with doctors and therapists locally before we found the best treatment for our son (high praise for the Child and Adolescent Center at Rogers Memorial Hospital in Wisconsin). Hence, I was not at all surprised to read that children with PANDAS OCD have been misdiagnosed and mistreated in the Boston area as well. Tragically, not only PANDAS OCD but all OCD is misunderstood by too many health care professionals, and too many children are suffering because of this.
Thank you, Neil Swidey, for writing about this silent epidemic. Our family took a similar journey to your nephew's, though, unfortunately it involved more pysch meds and despair prior to the diagnosis of PANDAS for our beautiful daughter. I cannot stress enough, how important awareness of this type is, because it was not the medical professionals that thought to test her for PANDAS, it was I. And had it not been for another PANDAS parent reading about my daughter on a friend's blog, I wouldn't have learned of PANDAS. I know that you are aware, that by writing this article, and by The Globe publishing it, you may well have saved the mental and emotional lives of a number of children. How many parents will read this and realize that their child is not in need of psych meds, but rather, antibiotics? God Bless You for helping even one kid through this. I'm confident the numbers are far great than that. Oh, and I should also mention that there are plenty of doctors at MGH that don't just claim to treat children with PANDAS/PANS, but really do. PARENTS, START THERE. Or, if you don't live in MA, go to: http://www.pandasresourcenetwork.org or http://savingsammy.net/providers.php
Thanks again, Neil, and The Boston Globe.
Malia Ott, West Newbury, MA
The real story here is the utter disdain and contempt for parents shown by *some* of the doctors at Boston Children's Hosp. They are so certain that they are right that they will dig in their heels and continue doing the wrong thing long after it is obviously, shockingly counterproductive. Parents who protest get threatened by social workers. To this day, my son's doctors have not reported the life-threatening side effects he experienced with IVIG, insisting that they were not related. Doctors refuse to believe anything that contradicts the established literature, even when the evidence is right before their eyes. But by refusing to believe rare situations exist, and by refusing to report rare situations, they just perpetuate the cycle of denial: If it isn't in the literature, it isn't true. To the parents who are waiting for IVIG approval: If your child gets worse a few weeks or months into IVIG, stop the treatment. It is a miracle for some people, but not for everyone, and 30-minute-long seizures should probably be listed alongside "headaches" and "nausea" as rare but possible side effects.
Thank you Neil Swidey and The Boston Globe for raising awareness of a very real and very devastating illness. If one has not experienced it first hand, it is nearly impossible to understand. One day a child could be a straight A student, play sports, music, etc. and the next, have anxiety, tics, OCD, and decline/regression in academic skills so severe that the child can no longer function properly. Forget how to spell, can't do math or write anymore. Very scary! Very real! Not a behavioral issue. Not a psychiatric issue. It is a medical issue with a variety of possible infectious causes that present as psychiatric symptoms. Clear the infection, clear the symptoms. Standard medications for regular OCD, tic, and anxiety are not the appropriate treatment for these children. In most cases, the child's symptoms are made worse with anti-psychiotics/antidepressants/SSRIs. Thank you again for helping the public to understand PANDAS/PANS.