DO YOU NEED TO SEE MULTIPLE SPECIALISTS? CHOPS COMPLEX CARE DEPARTMENT CAN BUILD YOUR DREAM TEAM The Childrens Hospital of Philadelphia is HUGE. It took our family 7 years to build our team and all of that advocacy and persistence has been worth it! In our case, 14 mito literate heads have proved better than one. Our team has successfully REVERSED 3 HUGE mitochondrial disease regressions in our boys (Niels twice, Lachlan once). The quality of life our family enjoys has surprised every member of our team!!! Our team communicates, collaborates, and uses current medical practices to treat our kids. We have not benefitted from some magical clinical trial or experimental procedure. We just work together for the benefit of Niels and Lachlan. How do we do this? In short, we enlisted Dr. Magnusson, a brilliant, compassionate, Complex Care Specialist. Mags (as we affectionately refer to him in our household) understands about a million complex diseases and conditions. He is accustomed to experiencing the unusual, and he has a tremendous breadth of experience. Whats more, he is intrigued by what he does not know, or what does not make sense to him. He is fearless, curious, intelligent, practical and creative. To best understand how our DREAM TEAM works, please watch the speech I delivered at CHOPs Chairmans Circle Dinner. The purpose of this speech was to thank CHOPs biggest donors, important executives, doctors, staff... everybody who has helped build CHOP into what it is today. I explained what our family is facing and how our team has worked tirelessly and bravely to help us enjoy life. In the process, our family has come to embrace hope. This is my speech. vimeo/m/102089043 This is the video that served as the conclusion. https://m.youtube/watch?v=WA8eRjhHXcg When you watch the video, you will learn that Dr. Tennekoon now calls the shots, and that I now do the coordinating. This is because Dr. Magnusson has taught our family and team well. I think Dr. Tennekoon (Nuero) and I have grown into communicating telepathically! We certainly have evolved over the years! NO ONE at CHOP expects families to jump into coordination at the level I have. I am extremely lucky in that our CHOP team embraces Moms insane level of advocacy! Our team seems to empathetically respect that, for me to survive emotionally, this is what I need to do. I think most (more reasonable) families will keep Dr. Magnusson at the helm! Poor Dr. Magnusson (and Jean Donato, his AMAZING right hand) have been overwhelmed by interest since Mom has been singing their praises all over Facebook! Jean has been receiving so many inquires ([email protected]), all she can do is respond by advising folks to send their files. In the mean time, she and Dr. Magnusson continue to process incoming files when they can. Experienced doctors, who are unafraid of unusual and curious clinical presentations (like Dr. Korson) leaving clinical practice has further increased the inquires Dr. Magnusson and Jean Donato experience. So, it may take a while to get Dr. Magnusson at the helm of your DREAM TEAM. That said, when using him you will avoid wasting time, energy, and resources doctor shoping for a DIY CHOP DREAM TEAM. He and his office will handle intake, be fully up to speed on your file, recruit CHOPs bestcase-appropriate sub specialists to join your team, coordinate collaborative out side of the box care, schedule and consolidate your appointments, serve as your primary point of contact, and advocate for your family. If you do not live locally, chances are that Dr. Magnusson can consolidate your visits into one or two trips a year. Between those trips, he can work with you via email and video conferencing. chop.edu/centers-programs/diagnostic-and-complex-care-center
Posted on: Thu, 08 Jan 2015 17:47:08 +0000