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
NOTES FROM SURVIVORS
I just finished reading Beth Healy’s very touching, deeply sad account of losing her partner, Kris Kono (“The Enemy of Unknown Origin,” October 28). I wanted to write to thank her for sharing her personal story, especially in such a direct and unflowery way. As a caregiver for my elderly parents who live 1,300 miles away, I appreciate the frustration and, at times, helplessness that she and Kris must have faced. I often wonder whether this is what we as a family are facing with my mother’s health challenges. There are still so many more questions than answers in health care, and I pray the talented professionals like Dr. Alexi Wright are up to the challenge of finding answers. Ultimately, we as caregivers must walk a balance of optimism and realism that reminds us all too well how precious time with our loved ones is and how important it is to be with them throughout.
Judy Ozbun / Boston
Healy’s article was very meaningful for me to read because my mother was diagnosed with cancer of unknown primary six years ago. After 10 months of treatment, she passed on at age 56. I had never heard of CUP before or since, as there are very few resources to be found. I am grateful that Healy wrote about this and hope that others find her article as comforting as I did; her writing very clearly explained what it is like to be diagnosed and treated for CUP. I loved that she ended her article with uplifting memories of Kris, a fitting tribute to someone who was not defined by cancer.
Jessica Noone / Weymouth
I really enjoyed reading James H. Burnett III’s article (“The Conception Challenge,” October 28). I went through eight miscarriages, bed rest, cerclage, and more. I know the pain, frustration, and joy of it all — I’m now blessed with two beautiful girls. It’s funny, now that they’re 14 and 12 the history of how they got here seems ancient. Lots of work having them, but anything good in life requires work, pain, and suffering. Good luck to the Burnett family with their second child!
Elaine Currie / Danvers
HUMOR IN SADNESS
Gwen Romagnoli’s piece “In the System” (Connections, October 28) reminded me of an incident after my husband had died. Our son, a Junior, had an appointment with our family optician. When I answered the phone one day, the woman from the optician’s office told me that she was confirming an appointment for John. I told her I was so sorry, but he had passed away. She was so sorry to hear it and said, “How tragic.” Her jaw dropped when my son Jay walked into the office for his appointment, having remembered it on his own, and she exclaimed, “Your mother said you had died!’’ They could all, fortunately, find the humor in an otherwise sad situation.
Carol Borselle / Oak Bluffs
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