Alex Posted June 2, 2010 Report Share Posted June 2, 2010 Our local newspapter, the Portland Press Herald, featured an article on Sammy and Beth Maloney and PANDAS on the front page the other day. I thought it was a well written article and I can't fault the reporter for accurately portraying the current state of belief in the medical community on PANDAS. I made an attempt at a letter to the editor which is posted below. The responses are limited to 300 words which was about half the size of my orignal draft. Hope it doesn't stink too bad and I'll let you know if it makes it into the paper. The link to the article is below and please send your own responses if you are so inclined. Alex http://www.pressherald.com/news/a-mothers-...archterm=pandas Response to June 1 ariticle “OCD caused by Strep?” My son developed Pediatric Autoimmune Disorders Associated with Streptococcus, or PANDAS after an untreated strep infection. I take exception with the opinion of Dr. Stephen Rioux of Maine Medical Center who remains unconvinced of its existence. I’m curious to know Dr. Rioux’s views on the 14 studies on the National Institute of Mental Health website supporting the case for PANDAS, including case histories, identification of specific antibodies and their effect on brain tissue, similarity to the other post- streptococcal diseases Rheumatic Fever and Sydenham’s Chorea, and an animal model. Dr. Swedo, the senior researcher from the National Institute of Mental Health quoted in the article, believes that the time for controversy about the existence of PANDAS should be long over. Due to the doubt physicians like Dr. Rioux foster, many parents find it nearly impossible to find treatment. In one of many such stories from our support network, a mother, in desperation when her child developed psychotic behaviors several days into a sore throat and fever, drove to a local children’s hospital. Once there, the staff denied treatment, including antibiotics for an obvious strep infection because ‘PANDAS does not exist’. In waiting for a large scale double blind study, Dr. Rioux sets an unattainable standard of proof, because PANDAS stems from untreated strep, something that would be unethical and unsafe to allow in a medical study. We were fortunate in that our son’s pediatrician was open to PANDAS and through her we found doctors willing to treat with antibiotics and immune modulating therapies. These doctors stumbled into treating PANDAS when the children of close friends or relatives developed the disorder. Their open minds to strong if not overwhelming scientific evidence allowed them to witness incredible recoveries. Maybe all the convincing Dr. Rioux would need would be to treat some PANDAS patients. Link to comment Share on other sites More sharing options...
nevergiveup Posted June 2, 2010 Report Share Posted June 2, 2010 That is great. I hope it gets published. Our local newspapter, the Portland Press Herald, featured an article on Sammy and Beth Maloney and PANDAS on the front page the other day. I thought it was a well written article and I can't fault the reporter for accurately portraying the current state of belief in the medical community on PANDAS. I made an attempt at a letter to the editor which is posted below. The responses are limited to 300 words which was about half the size of my orignal draft. Hope it doesn't stink too bad and I'll let you know if it makes it into the paper. The link to the article is below and please send your own responses if you are so inclined. Alex http://www.pressherald.com/news/a-mothers-...archterm=pandas Response to June 1 ariticle “OCD caused by Strep?” My son developed Pediatric Autoimmune Disorders Associated with Streptococcus, or PANDAS after an untreated strep infection. I take exception with the opinion of Dr. Stephen Rioux of Maine Medical Center who remains unconvinced of its existence. I’m curious to know Dr. Rioux’s views on the 14 studies on the National Institute of Mental Health website supporting the case for PANDAS, including case histories, identification of specific antibodies and their effect on brain tissue, similarity to the other post- streptococcal diseases Rheumatic Fever and Sydenham’s Chorea, and an animal model. Dr. Swedo, the senior researcher from the National Institute of Mental Health quoted in the article, believes that the time for controversy about the existence of PANDAS should be long over. Due to the doubt physicians like Dr. Rioux foster, many parents find it nearly impossible to find treatment. In one of many such stories from our support network, a mother, in desperation when her child developed psychotic behaviors several days into a sore throat and fever, drove to a local children’s hospital. Once there, the staff denied treatment, including antibiotics for an obvious strep infection because ‘PANDAS does not exist’. In waiting for a large scale double blind study, Dr. Rioux sets an unattainable standard of proof, because PANDAS stems from untreated strep, something that would be unethical and unsafe to allow in a medical study. We were fortunate in that our son’s pediatrician was open to PANDAS and through her we found doctors willing to treat with antibiotics and immune modulating therapies. These doctors stumbled into treating PANDAS when the children of close friends or relatives developed the disorder. Their open minds to strong if not overwhelming scientific evidence allowed them to witness incredible recoveries. Maybe all the convincing Dr. Rioux would need would be to treat some PANDAS patients. Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted June 2, 2010 Report Share Posted June 2, 2010 I like it, Alex. With your permission, I might even borrow it, replace "Dr. Rioux" for "Dr. Schulman" (for Stanford Schulman, Chicago Children's Hospital's infectious disease "expert" who recently panned the entire concept of PANDAS and thus poisoned the lake for a lot us Chicago-area PANDAS folks) and send it on its way to our local papers, as well! Why such obstinance among people who are supposed to have some level of intellectual curiosity?!?! It's appalling. Link to comment Share on other sites More sharing options...
mama2alex Posted June 2, 2010 Report Share Posted June 2, 2010 Excellent!! I hope they print it! And I hope that Dr. reads it. Link to comment Share on other sites More sharing options...
JAG10 Posted June 2, 2010 Report Share Posted June 2, 2010 Alex: I am always so impressed with your ability to cut through all the garbage to the very essence of what really matters... in a way that even Dr. Rue-the-day-he-messed-with-PANDAS can comprehend! Link to comment Share on other sites More sharing options...
bgbarnes Posted June 2, 2010 Report Share Posted June 2, 2010 BRAVO!!! Well said! I hope they print it- let us know!! Brandy Link to comment Share on other sites More sharing options...
becjonz Posted June 2, 2010 Report Share Posted June 2, 2010 Really nice job! You did a great job of providing info and answering the dr.'s protests against PANDAS. Link to comment Share on other sites More sharing options...
peglem Posted June 2, 2010 Report Share Posted June 2, 2010 You cut very nicely to the heart of the matter, and so civil, too...didn't even mention Dr. Rioux's castration! Link to comment Share on other sites More sharing options...
colleenrn Posted June 2, 2010 Report Share Posted June 2, 2010 I think your letter to the editor is very good. I had to check out ther infamous Dr Rioux after reading what he said in that article.How scary is it that the Center where he works lists his "primary responsibility" as performing pediatric neurology consultations and teaching house staff and medical students So he is teaching these med students that PANDAS does not exist so we can have a whole new batch of the "disbelievers" . UGH............... I would just love to be there when these drs finally realize how real PANDAS is. What will they say then? "Whoops, it is real. How dumb was I?" Colleen Link to comment Share on other sites More sharing options...
peglem Posted June 2, 2010 Report Share Posted June 2, 2010 I left a comment for people to vote for our refresh project to give Dr. Rioux some more research! Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted June 2, 2010 Report Share Posted June 2, 2010 I left a comment for people to vote for our refresh project to give Dr. Rioux some more research! Brilliant!!! Link to comment Share on other sites More sharing options...
peglem Posted June 2, 2010 Report Share Posted June 2, 2010 I left a comment for people to vote for our refresh project to give Dr. Rioux some more research! Brilliant!!! They haven't published it yet (my comment) and wonder if they will the last published comment was yesterday. Link to comment Share on other sites More sharing options...
forjpj Posted June 2, 2010 Report Share Posted June 2, 2010 Nice!! I wish I could quote the studies so well!! Link to comment Share on other sites More sharing options...
airial95 Posted June 2, 2010 Report Share Posted June 2, 2010 I left a comment for people to vote for our refresh project to give Dr. Rioux some more research! Brilliant!!! They haven't published it yet (my comment) and wonder if they will the last published comment was yesterday. It was there when I read it about an hour ago! Link to comment Share on other sites More sharing options...
coco Posted June 2, 2010 Report Share Posted June 2, 2010 Alex, beautifully written! I am so glad you took the time to rebutt! I always say to the "doubters" out there, "Yeah, and the earth was flat until it was round!" Link to comment Share on other sites More sharing options...
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