Hi guys! Hope the moment finds you well. I wanted to share with you an interview I did for the organization, Alternative Mental Health, for a few reasons. I posted the interview below, and it's also posted in our monthly newsletter, which you can find here Alternative Mental Health News. If you click on the prior link, you'll find another link to download a FREE ebook, Complementary and Alternative Medicine Treatments in Psychiatry, which was written by Safe Harbor president, Dan Stradford, with additional chapters written by Christine Berger, Ph.D., of the University of Maryland Medical School, Hyla Cass, MD (author of 8 other books on alternative treatments including 8 Weeks to Vibrant Health), and Garry Vickar, M.D.. of Washington University Medical School. The publishing company just said the book has already been downloaded across 75 countries, and downloads continue to accelerate. That's exciting, because it tells me people are actively seeking alternatives to the prescription pill craze! So, definitely check it out!
The interview I posted is with Beth Maloney, an attorney who was recently featured on a segment of the TV show, The Doctors. She's the author of Saving Sammy, A Mother's Fight to Cure her Son's OCD. Her full biography is below. I wanted to share her interview for a couple of reasons. First, her story perfectly highlights how a physical illness or outside pathogen, such as Strep. Pneumo, can be at the root of perceived mental illness and how overlooking that fact can result in tragic consequences for a person. Too often people come to the doctor's office with mental symptoms, are diagnosed with a mental illness and prescribed psychiatric medication, without a thorough physical exam or blood tests. In Beth's case, a simple blood test would have saved her son from a lot of unnecessary medication and trouble. Secondly, Beth's experience and willingness to share her story show the power of personal testimonies and the impact they can have within the traditional media and cyber-connected world. By courageously sharing her story with as many people as she can, she's educating patients, teaching doctors and, essentially changing medicine and improving the way a medical diagnosis is made. She's helping countless children avoid the wrong diagnosis of OCD, simply because their parents read her book and demand a blood test first. And that's the power of one person's voice and determination. We can all make a tremendous difference in other people's lives simply by sharing our experiences with the world. Especially today, since everyone's online. So if you're thinking about starting a blog, writing a book, article, etc., and sharing bits and pieces of yourself with the world, do it. Don't worry about what people say or think. There will always be haters, and "haters gonna hate." And chances are, you'll have fans too. ;) As Elie Wiesel says, " “Whoever survives a test, whatever it may be, must tell the story. That is his duty." Amen.
Beth Maloney is a successful attorney who has represented both writers and producers, celebrity entertainers and athletes, including Johnny Carson, Kareem Abdul-Jabbar and Shaquille O'Neal. Her experience includes serving as Vice-President of Legal Affairs for Orion Pictures Corporation and producing motion pictures. She also handles general business matters, wills, trusts, and estate planning. She has served as Guardian ad Litem for hundreds of children in family matters and in state cases alleging neglect and abuse, and she offers consulting services via telephone and skype to parents across the country dealing with complicated medical issues and difficult custody situations. Saving Sammy is her first book. It's a heartwarming, true story based on her incredible experience with her son who was misdiagnosed with OCD and prescribed psychiatric medication, when he actually had PANDAS, a complication from a streptococcus infection that infects the brain. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. It's common mental symptoms include OCD, ADHD symptoms, Tourette Syndrome, Anorexia and Trichotillomania. You can find more information on PANDAS on the International Pandas Research Site. Ms. Maloney was recently featured on the popular TV show The Doctors to raise awareness about PANDAS and to help meet her goal for writing Saving Sammy which is, "I want to change the face of mental illness for children. I want parents to insist that doctors eliminate the possibility of a physical cause, like a bacteria or virus, before starting children on psychiatric medication."
Dr. ErinKate: How did you finally figure out that your son's mental symptoms were due to PANDAS?
Ms. Maloney: When he started presenting with symptoms, I took him first to a psychologist. We had just moved, his older brother was going away to school..., and though that hadn't bothered anyone, my son started presenting with all these symptoms. The assumption was that he needed some sort of counseling. Honestly , no one was anxious about any of the stuff. It was an upbeat, positive atmosphere, but I thought I might have underestimated how it was all effecting my son. So I took him first to a psychologist, and my son continued to not improve. Then we were referred to a psychiatrist who diagnosed him with Obsessive Compulsive Disorder and placed him on the SSRI, Zoloft. But my son continued to get worse. He never ever responded to the medication. We did every single thing we were requested to do. We created anxiety charts, administered the medication religiously, and...well, I'm an attorney so I'm very thorough. He never improved. Then he developed motor tics and verbal tics and was diagnosed with Tourette's. A whole year had gone by, and there was no improvement. He was about to start Clonidine when he had a major crisis episode, and that's when the doctor started telling me that he might never get better, I might have to find a place for him, and he might be in and out of hospitals for the rest of his life. One day, I called my mom sobbing to say that I could no longer maintain him at home. I wasn't able to work and had 2 other kids at home. Then someone who worked with my mom called me and asked me if I had him tested for Strep. And I said he never had Strep. As far as I knew he never had strep. She said you don't know that in less you run a blood test. That's how we found out.
Dr. ErinKate: Was your mom's friend in the medical community?
Ms. Maloney: No. Her son had PANDAS for 10 years. And what had happened is one day, she took her daughter to see an ENT, because her daughter was having throat problems, and the ENT asked questions about her daughter's family history. When that mom mentioned that her son had an OCD disorder, the ENT looked up at her and said, "Have you ever had your son tested for Strep?" As luck had it, he had just been to a medical seminar where PANDAS was briefly mentioned. So that's how she found out.
Dr. ErinKate: Wow. I went to medical school, and I don't think, until now, that I would ever even list PANDAS on my differential for an OCD disorder.
Ms. Maloney: Right. And that's not uncommon. Actually Dr. Travis Stork, the ER physician on The Doctors said to me before the taping of the show, " I just don't understand why I never heard about this. I'm an ER physician and never even heard of it." I told him that's not unusual,which is why I set up meetings with deans at medical schools across the country trying to get PANDAS into their learning curriculum, because if you catch it early, it's simple. The problem is that it's not recognized so what happens is kids are being misdiagnosed and given the wrong medication. About a week ago the American Academy of Pediatrics came out with a bulletin recommending that preschoolers be evaluated for ADHD and potentially medicated. I'm looking at this thinking, "Are you kidding me? But we're not going to run Strep tests?" If you go to the International PANDAS foundation and click on basics, there is a list of different behaviors that can indicate Strep. infection. ADHD is one of them.
Dr. ErinKate: From your research, can PANDAS ever present in adults? If, say, an adult was misdiagnosed as a child and now presenting with ADHD symptoms as an adult..., could that be due to an untreated Strep infection?
Ms. Maloney: It could, but I think what happens, and this is what I gather from receiving almost 14,000 emails through my website, is that there comes a point in time when the infection becomes chronic, and the pathways in the brain are so damaged that they just stay that way. I hate to say that. Sometimes I get emails from parents who say, for example, "My god. My daughter is 25. When she was 15 she suddenly changed and had OCD. Is there hope for her now?" I just think the older you get, it's a whole different thing.
Dr. ErinKate: I see, which is why it's so critical to recognize it and treat it early. Is there a particular area of the brain that's affected more than others?
Ms. Maloney: Yes - it attacks the basal ganglia...which is the area that controls behavior. And when I say "it," I'm referring to the antibody. It's the antibody that attacks. ( Meaning it's not actually the Strep. bacteria directly attacking the brain. When our immune system forms antibodies to the Strep. bacteria, in PANDAS, those antibodies also attack the basal ganglia area of the brain.)
Dr. ErinKate: I read that you first started your son on penicillin? ( Strep infections can be treated with penicillin.)
Ms. Maloney:Yes. Well, first, I went immediately for a blood test. Once you have strep, you are positive for strep for the rest of your life. The question is what is the level of antibody and my son had an elevated titer. So we immediately put him on penicillin and figured we were done. The penicillin did have a positive effect, but the problem was after about 3 weeks it became completely ineffective. And so we tried a series of antibiotics. And then I called my mom's friend back, and she gave me name for a doctor who knew the kids respond best to augmentin. Across the board, that is what the children respond to.
Dr. ErinKate: How prevalent do you and other experts think PANDAS is?
Ms. Maloney: Half of the children diagnosed with OCD. At least half of the kids with OCD.
Dr. ErinKate: Wow, that is a lot! Will the titer always be high?
Ms. Maloney:What happens is the titers are at least initially high. There was 1 study done at Columbia university with 2 groups of mice. In the first group, only Strep. bacteria was injected, and the mice produced antibodies to the Strep and started OCD behavior- to the point of ripping hair out of their skin. Then they only injected the antibody in the second group of mice, not the bacteria, and the mice exhibited OCD behavior. So we know it’s the antibody causing the behavior.
Dr. ErinKate: Can you talk a little bit about your goal for Saving Sammy and the work you're doing within the medical community?
Ms. Maloney:My goal would be to have PANDAS taught in all pediatric residencies, because that’s where parents take their kids first: to the pediatricians.I spent a lot of time trying to convince doctors, and that didn’t really get me anywhere. So my goal is to get as much national publicity as possible. Writing the book and going on television has changed medicine. It has motivated parents to say, “Well I want my child to have a Strep test.” Every single day I get an email saying thank you so much for writing this book. I figured out what was going on with my son and so on.
Dr. ErinKate: Any more books in the future?
Ms. Maloney:I’m writing another book- a parent handbook . Saving Sammy is biographical, but this book is going to be a roadmap for the disorder written in very understandable terms. In the meantime I continue to do any kind of publicity that comes along, because that’s what works. We can have a medical conference and have a bunch of researchers talking to each other, but honestly, that doesn’t really help the kids. What happens after people read my book is they walk into their doctor’s office with my book and say, "I want my kid tested like Sammy."
To purchase Saving Sammy and find out more about PANDAS, you can find it on Ms. Maloney's following website: Saving Sammy: A Mother's Fight to Cure her Son's OCD. If you'd like to repost this inteview somewhere, please just write me and ask.
Thanks,
erinKate
The interview I posted is with Beth Maloney, an attorney who was recently featured on a segment of the TV show, The Doctors. She's the author of Saving Sammy, A Mother's Fight to Cure her Son's OCD. Her full biography is below. I wanted to share her interview for a couple of reasons. First, her story perfectly highlights how a physical illness or outside pathogen, such as Strep. Pneumo, can be at the root of perceived mental illness and how overlooking that fact can result in tragic consequences for a person. Too often people come to the doctor's office with mental symptoms, are diagnosed with a mental illness and prescribed psychiatric medication, without a thorough physical exam or blood tests. In Beth's case, a simple blood test would have saved her son from a lot of unnecessary medication and trouble. Secondly, Beth's experience and willingness to share her story show the power of personal testimonies and the impact they can have within the traditional media and cyber-connected world. By courageously sharing her story with as many people as she can, she's educating patients, teaching doctors and, essentially changing medicine and improving the way a medical diagnosis is made. She's helping countless children avoid the wrong diagnosis of OCD, simply because their parents read her book and demand a blood test first. And that's the power of one person's voice and determination. We can all make a tremendous difference in other people's lives simply by sharing our experiences with the world. Especially today, since everyone's online. So if you're thinking about starting a blog, writing a book, article, etc., and sharing bits and pieces of yourself with the world, do it. Don't worry about what people say or think. There will always be haters, and "haters gonna hate." And chances are, you'll have fans too. ;) As Elie Wiesel says, " “Whoever survives a test, whatever it may be, must tell the story. That is his duty." Amen.
Beth Maloney is a successful attorney who has represented both writers and producers, celebrity entertainers and athletes, including Johnny Carson, Kareem Abdul-Jabbar and Shaquille O'Neal. Her experience includes serving as Vice-President of Legal Affairs for Orion Pictures Corporation and producing motion pictures. She also handles general business matters, wills, trusts, and estate planning. She has served as Guardian ad Litem for hundreds of children in family matters and in state cases alleging neglect and abuse, and she offers consulting services via telephone and skype to parents across the country dealing with complicated medical issues and difficult custody situations. Saving Sammy is her first book. It's a heartwarming, true story based on her incredible experience with her son who was misdiagnosed with OCD and prescribed psychiatric medication, when he actually had PANDAS, a complication from a streptococcus infection that infects the brain. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. It's common mental symptoms include OCD, ADHD symptoms, Tourette Syndrome, Anorexia and Trichotillomania. You can find more information on PANDAS on the International Pandas Research Site. Ms. Maloney was recently featured on the popular TV show The Doctors to raise awareness about PANDAS and to help meet her goal for writing Saving Sammy which is, "I want to change the face of mental illness for children. I want parents to insist that doctors eliminate the possibility of a physical cause, like a bacteria or virus, before starting children on psychiatric medication."
Dr. ErinKate: How did you finally figure out that your son's mental symptoms were due to PANDAS?
Ms. Maloney: When he started presenting with symptoms, I took him first to a psychologist. We had just moved, his older brother was going away to school..., and though that hadn't bothered anyone, my son started presenting with all these symptoms. The assumption was that he needed some sort of counseling. Honestly , no one was anxious about any of the stuff. It was an upbeat, positive atmosphere, but I thought I might have underestimated how it was all effecting my son. So I took him first to a psychologist, and my son continued to not improve. Then we were referred to a psychiatrist who diagnosed him with Obsessive Compulsive Disorder and placed him on the SSRI, Zoloft. But my son continued to get worse. He never ever responded to the medication. We did every single thing we were requested to do. We created anxiety charts, administered the medication religiously, and...well, I'm an attorney so I'm very thorough. He never improved. Then he developed motor tics and verbal tics and was diagnosed with Tourette's. A whole year had gone by, and there was no improvement. He was about to start Clonidine when he had a major crisis episode, and that's when the doctor started telling me that he might never get better, I might have to find a place for him, and he might be in and out of hospitals for the rest of his life. One day, I called my mom sobbing to say that I could no longer maintain him at home. I wasn't able to work and had 2 other kids at home. Then someone who worked with my mom called me and asked me if I had him tested for Strep. And I said he never had Strep. As far as I knew he never had strep. She said you don't know that in less you run a blood test. That's how we found out.
Dr. ErinKate: Was your mom's friend in the medical community?
Ms. Maloney: No. Her son had PANDAS for 10 years. And what had happened is one day, she took her daughter to see an ENT, because her daughter was having throat problems, and the ENT asked questions about her daughter's family history. When that mom mentioned that her son had an OCD disorder, the ENT looked up at her and said, "Have you ever had your son tested for Strep?" As luck had it, he had just been to a medical seminar where PANDAS was briefly mentioned. So that's how she found out.
Dr. ErinKate: Wow. I went to medical school, and I don't think, until now, that I would ever even list PANDAS on my differential for an OCD disorder.
Ms. Maloney: Right. And that's not uncommon. Actually Dr. Travis Stork, the ER physician on The Doctors said to me before the taping of the show, " I just don't understand why I never heard about this. I'm an ER physician and never even heard of it." I told him that's not unusual,which is why I set up meetings with deans at medical schools across the country trying to get PANDAS into their learning curriculum, because if you catch it early, it's simple. The problem is that it's not recognized so what happens is kids are being misdiagnosed and given the wrong medication. About a week ago the American Academy of Pediatrics came out with a bulletin recommending that preschoolers be evaluated for ADHD and potentially medicated. I'm looking at this thinking, "Are you kidding me? But we're not going to run Strep tests?" If you go to the International PANDAS foundation and click on basics, there is a list of different behaviors that can indicate Strep. infection. ADHD is one of them.
Dr. ErinKate: From your research, can PANDAS ever present in adults? If, say, an adult was misdiagnosed as a child and now presenting with ADHD symptoms as an adult..., could that be due to an untreated Strep infection?
Ms. Maloney: It could, but I think what happens, and this is what I gather from receiving almost 14,000 emails through my website, is that there comes a point in time when the infection becomes chronic, and the pathways in the brain are so damaged that they just stay that way. I hate to say that. Sometimes I get emails from parents who say, for example, "My god. My daughter is 25. When she was 15 she suddenly changed and had OCD. Is there hope for her now?" I just think the older you get, it's a whole different thing.
Dr. ErinKate: I see, which is why it's so critical to recognize it and treat it early. Is there a particular area of the brain that's affected more than others?
Ms. Maloney: Yes - it attacks the basal ganglia...which is the area that controls behavior. And when I say "it," I'm referring to the antibody. It's the antibody that attacks. ( Meaning it's not actually the Strep. bacteria directly attacking the brain. When our immune system forms antibodies to the Strep. bacteria, in PANDAS, those antibodies also attack the basal ganglia area of the brain.)
Dr. ErinKate: I read that you first started your son on penicillin? ( Strep infections can be treated with penicillin.)
Ms. Maloney:Yes. Well, first, I went immediately for a blood test. Once you have strep, you are positive for strep for the rest of your life. The question is what is the level of antibody and my son had an elevated titer. So we immediately put him on penicillin and figured we were done. The penicillin did have a positive effect, but the problem was after about 3 weeks it became completely ineffective. And so we tried a series of antibiotics. And then I called my mom's friend back, and she gave me name for a doctor who knew the kids respond best to augmentin. Across the board, that is what the children respond to.
Dr. ErinKate: How prevalent do you and other experts think PANDAS is?
Ms. Maloney: Half of the children diagnosed with OCD. At least half of the kids with OCD.
Dr. ErinKate: Wow, that is a lot! Will the titer always be high?
Ms. Maloney:What happens is the titers are at least initially high. There was 1 study done at Columbia university with 2 groups of mice. In the first group, only Strep. bacteria was injected, and the mice produced antibodies to the Strep and started OCD behavior- to the point of ripping hair out of their skin. Then they only injected the antibody in the second group of mice, not the bacteria, and the mice exhibited OCD behavior. So we know it’s the antibody causing the behavior.
Dr. ErinKate: Can you talk a little bit about your goal for Saving Sammy and the work you're doing within the medical community?
Ms. Maloney:My goal would be to have PANDAS taught in all pediatric residencies, because that’s where parents take their kids first: to the pediatricians.I spent a lot of time trying to convince doctors, and that didn’t really get me anywhere. So my goal is to get as much national publicity as possible. Writing the book and going on television has changed medicine. It has motivated parents to say, “Well I want my child to have a Strep test.” Every single day I get an email saying thank you so much for writing this book. I figured out what was going on with my son and so on.
Dr. ErinKate: Any more books in the future?
Ms. Maloney:I’m writing another book- a parent handbook . Saving Sammy is biographical, but this book is going to be a roadmap for the disorder written in very understandable terms. In the meantime I continue to do any kind of publicity that comes along, because that’s what works. We can have a medical conference and have a bunch of researchers talking to each other, but honestly, that doesn’t really help the kids. What happens after people read my book is they walk into their doctor’s office with my book and say, "I want my kid tested like Sammy."
To purchase Saving Sammy and find out more about PANDAS, you can find it on Ms. Maloney's following website: Saving Sammy: A Mother's Fight to Cure her Son's OCD. If you'd like to repost this inteview somewhere, please just write me and ask.
Thanks,
erinKate
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