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Boston Globe article


kos_mom
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I'll copy here, in case the link isn't available later:

 

PARENTS AND DOCTORS REACT

 

As a pediatrician and a mom, I just want to thank Neil Swidey for his article on PANS/PANDAS (“The Children Who Change Overnight,” October 28). Too often medical professionals are unwilling to acknowledge what we do not know or what does not easily fit into a diagnosis that we have been taught. I have many PANDAS patients in my practice in the Philadelphia suburbs, and I admit to each one of them that I am learning right along with them, being open-minded, as pediatricians need to be. Thank you to Swidey for continuing to spread the word.

 

Dr. Heather Orman-Lubell / Yardley, Pennsylvania

 

I am a physician whose oldest son was diagnosed with PANDAS in January 2009. His case was severe. Thankfully, as a physician, when I would walk in and tell his story, my colleagues would listen. He is now 11 and thriving. Two years ago my second son started showing symptoms and has required both antibiotics and IVIG (intravenous immunoglobulin) to heal. My daughter, age 6, woke up one Saturday six weeks ago with severe anxiety, a tic, and OCD. I took her to the pediatrician, and sure enough she was strep positive. Three for three now. I can’t thank Swidey enough for his interest and thoroughness. This discussion needs to be brought to the attention of all parents and pediatricians. I am convinced, though, that PANDAS is not rare, just rarely diagnosed.

 

 

 

Dr. Claire Bowles / Charlotte, North Carolina

 

My daughter was an athletic, smart, well-liked, beautiful 10-year-old who turned overnight. She could not sit down even at school or in the car, would not eat, and was obsessed with exercising. We were told by Children’s Medical Center in Dallas that she was an anorexic and needed inpatient treatment. They would not even entertain any idea that it could be caused by an infection. We did not send her to their inpatient program but spent a year with counselors, doctors, antidepressants. We even took her to a one-week out-of-state eating disorders program. We had heard of PANDAS from her nutritionist and felt sure she had it because she had high blood strep levels, but needed the counseling to help until she was better. Twelve months later, for no apparent reason, our daughter came back. She returned to her friends, her sports, and her life, eating normally, like an 11-year-old should. I took her in for blood work, and her strep levels had returned to normal. She is now a well-adjusted 14-year-old. She will not talk about that year, but I will never forget it. I wish I could do more to get these doctors to believe that this is a real condition.

 

Karen Nichols / Longview, Texas

 

As the mom of a PANDAS kid going on four years, I know what a difficult battle it is. Every doctor who agrees to see you and with the diagnosis is a godsend. Getting this information out to a broader public is essential to prevent misdiagnosis and incorrect treatment, but simply having the public more aware helps all of us living with this health challenge.

 

Deborah C. Penney / Memphis

 

I am a PANDAS mom in Sweden, and Swidey’s article is so well written and informative that I am spreading it to everyone I know. Being a professional in the autism field, I can also say that this PANDAS battleground has many traits in common with the situation regarding autism 30 years ago. It is just that the world wasn’t so connected at that time, so the battles weren’t going on in the open. The professionals were thinking that autism was caused by bad parenting, and for years and years mental health professionals could not see outside this paradigm. At least not until parents pushed and pushed for change, and got some professionals on their side, did we eventually get a new paradigm. That is where PANDAS stands today. With time, more open-minded scientists are moving toward the new paradigm, while others continue to cling to the old. It is a difficult situation for scientists to stand between paradigms. But eventually a scientific revolution takes place and the paradigm shifts. We have seen this happen over and over in science. What is really helpful is that articles such as Swidey’s can make the paradigm shift sooner rather than later.

 

Gunilla Gerland / Stockholm

 

Thank you for your thoughtful article on PANDAS. My 9-year-old son is now doing well as a patient of Dr. Denis Bouboulis after a harrowing ordeal of sudden onset, confused doctors, misdiagnoses, treatments being stopped because they worked (incredible as that may seem), and a year of missed school. We were fortunate enough to find Dr. Bouboulis, and the antibiotic treatment has my son back to about 75-80 percent. IVIG may be next for him; we’ll see at our next visit. I hope that balanced reporting like Swidey’s will help sensible doctors to consider the patient first, not the “controversy’’ that seems too often to get in the way of helping our kids when they need it most.

 

John Egan / Warwick, Rhode Island

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I'll copy here, in case the link isn't available later:

 

PARENTS AND DOCTORS REACT

 

As a pediatrician and a mom, I just want to thank Neil Swidey for his article on PANS/PANDAS (“The Children Who Change Overnight,” October 28). Too often medical professionals are unwilling to acknowledge what we do not know or what does not easily fit into a diagnosis that we have been taught. I have many PANDAS patients in my practice in the Philadelphia suburbs, and I admit to each one of them that I am learning right along with them, being open-minded, as pediatricians need to be. Thank you to Swidey for continuing to spread the word.

 

Dr. Heather Orman-Lubell / Yardley, Pennsylvania

 

I am a physician whose oldest son was diagnosed with PANDAS in January 2009. His case was severe. Thankfully, as a physician, when I would walk in and tell his story, my colleagues would listen. He is now 11 and thriving. Two years ago my second son started showing symptoms and has required both antibiotics and IVIG (intravenous immunoglobulin) to heal. My daughter, age 6, woke up one Saturday six weeks ago with severe anxiety, a tic, and OCD. I took her to the pediatrician, and sure enough she was strep positive. Three for three now. I can’t thank Swidey enough for his interest and thoroughness. This discussion needs to be brought to the attention of all parents and pediatricians. I am convinced, though, that PANDAS is not rare, just rarely diagnosed.

 

 

 

Dr. Claire Bowles / Charlotte, North Carolina

 

My daughter was an athletic, smart, well-liked, beautiful 10-year-old who turned overnight. She could not sit down even at school or in the car, would not eat, and was obsessed with exercising. We were told by Children’s Medical Center in Dallas that she was an anorexic and needed inpatient treatment. They would not even entertain any idea that it could be caused by an infection. We did not send her to their inpatient program but spent a year with counselors, doctors, antidepressants. We even took her to a one-week out-of-state eating disorders program. We had heard of PANDAS from her nutritionist and felt sure she had it because she had high blood strep levels, but needed the counseling to help until she was better. Twelve months later, for no apparent reason, our daughter came back. She returned to her friends, her sports, and her life, eating normally, like an 11-year-old should. I took her in for blood work, and her strep levels had returned to normal. She is now a well-adjusted 14-year-old. She will not talk about that year, but I will never forget it. I wish I could do more to get these doctors to believe that this is a real condition.

 

Karen Nichols / Longview, Texas

 

As the mom of a PANDAS kid going on four years, I know what a difficult battle it is. Every doctor who agrees to see you and with the diagnosis is a godsend. Getting this information out to a broader public is essential to prevent misdiagnosis and incorrect treatment, but simply having the public more aware helps all of us living with this health challenge.

 

Deborah C. Penney / Memphis

 

I am a PANDAS mom in Sweden, and Swidey’s article is so well written and informative that I am spreading it to everyone I know. Being a professional in the autism field, I can also say that this PANDAS battleground has many traits in common with the situation regarding autism 30 years ago. It is just that the world wasn’t so connected at that time, so the battles weren’t going on in the open. The professionals were thinking that autism was caused by bad parenting, and for years and years mental health professionals could not see outside this paradigm. At least not until parents pushed and pushed for change, and got some professionals on their side, did we eventually get a new paradigm. That is where PANDAS stands today. With time, more open-minded scientists are moving toward the new paradigm, while others continue to cling to the old. It is a difficult situation for scientists to stand between paradigms. But eventually a scientific revolution takes place and the paradigm shifts. We have seen this happen over and over in science. What is really helpful is that articles such as Swidey’s can make the paradigm shift sooner rather than later.

 

Gunilla Gerland / Stockholm

 

Thank you for your thoughtful article on PANDAS. My 9-year-old son is now doing well as a patient of Dr. Denis Bouboulis after a harrowing ordeal of sudden onset, confused doctors, misdiagnoses, treatments being stopped because they worked (incredible as that may seem), and a year of missed school. We were fortunate enough to find Dr. Bouboulis, and the antibiotic treatment has my son back to about 75-80 percent. IVIG may be next for him; we’ll see at our next visit. I hope that balanced reporting like Swidey’s will help sensible doctors to consider the patient first, not the “controversy’’ that seems too often to get in the way of helping our kids when they need it most.

 

John Egan / Warwick, Rhode Island

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Proud to say that our Pediatrician's letter to the Editor is first on the list. We are so lucky to have a Pediatrician that is open minded and knowledgable! She has supported us every step of the way in this challenging journey and we are so grateful to her!

Teri

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Proud to say that our Pediatrician's letter to the Editor is first on the list. We are so lucky to have a Pediatrician that is open minded and knowledgable! She has supported us every step of the way in this challenging journey and we are so grateful to her!

Teri

Teri- could you pm me info on the Ped. She is not far from us and I was so excited to see someone close to home willing to learn.

 

ko's mom- thanks for sharing!

Edited by philamom
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