Jason Maude has developed an online diagnosis support program in order to help doctors be sure they have not overlooked something in the course of diagnosis and treatment. This system is called the Isabel System, in honor of his daughter who suffered a terrible staph infection that went undiagnosed for a very long time. Here is her story:
When she was three years old, Isabel Maude had a worsening fever that was dismissed as complications from chicken pox by the family doctor. Even after she began vomiting blood and developed a purplish swelling in her groin, a local emergency room failed to check for other infections. Only when she collapsed in delirium was she rushed to a larger hospital where doctors finally diagnosed her with two deadly infections — toxic shock syndrome and necrotizing fasciitis, a flesh-eating bacteria. Hospitalized for nearly seven weeks, she had multiple organ failure, required 22 defibrillations, and was left with a gaping wound in her stomach that required extensive plastic surgery. Source
You will be happy to know that Isabel is now a healthy 11 year old. Kaiser and the VA hospitals are pilot testing the Isabel System, which claims to suggest a correct diagnosis 98% of the time. While doctors wouldn’t necessarily want to rely on this system all the time, it certainly can help them deduce a difficult illness.
Some helpful tips on what you can do to help prevent a misdiagnosis are:
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Tell your story well: Describe symptoms clearly and completely, and detail past illnesses and treatments.
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Be an informed consumer: Read about your condition or diagnostic tests online.
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Get results: Make sure you and your doctor receive and follow up on any test results.
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Speak up: Don’t be afraid to ask, ‘What else could this be?’
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3 responses so far ↓
Sagree Govender // May 22, 2007 at 3:33 pm
I am so touched, that I am in tears. Wish there were more people that were concerned about family members. I am a nurse, and it destroys me to see what happens in health care, therefore I am now in informatics. I could not see this happen. We have pledged to all the children in the world that we wil WASH OUR HANDS and stop the spread of MRSA. That is the first point of contact, CONTACT, WASH YOUR HANDS and save lives. Isabel, I do hope you are well, and will always remember how lucky you are. The guys that are piloting this project, Good luck, wish I was there to help. I am abroad, Cheers
Christina Jones // May 22, 2007 at 4:04 pm
Thanks so much for the heartfelt comment, Sagree. It just kills me to read these stories sometimes, and to talk to parents who have been through this with their babies. I thought my husband having it was devastating, the only thing worse would be my children. Keep up the great work, and take good care of yourself.
Barbara // Aug 7, 2007 at 8:46 pm
It warms my heart to know that 8 years have passed and Isabel is doing well. It is very encouraging as my family now, for the second time in 7 months, have watched our one year old grandaughter undergo surgery to her neck for MRSA infection. The first time it was Necrotizing Fasciitis that was in fact diagnosed very quickly (although the diagnosis was missed the morning she was sick, however, Children;s Hospital where we brought her some five hours later got the diagnosis right on, and treated her swiftly with surgery). However, this time around, the MRSA infection, again in her neck, did not turn necrotzing. The antibiotics (5 weeks worth) clindomycin and vanomycin work. The scary part is will this happen again after the antibiotics stop whether it be shortly or again another six months. We are not sure how to stop the spread of it or rid it. We are working with infectious disease, immunology and surgeons, but there are no good answers or guarantees. We are all hypervigilant about washing our hands, especially around Kaylee, but we wonder too how many good bugs are we killing with the constant purell washing, etc. We are trying so hard. I am very touched that Isabel’s outcome was good. I want to be able to right in eight years too so other people can get well.
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