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We published Denise Van Sant-Smith’s first letter to us on March 21, 2008. In it she chronicled the story of her young son, who was diagnosed with type 1 in August 2007. Denise, a registered nurse, enrolled her son in a clinical trial backed by the JDRF (Juvenile Diabetes Research Foundation) of an experimental drug, teplizumab (MGA031). After participating in the trial, she wrote to say that her son hadn’t used insulin since November 27, 2007.
She wrote to us a second time to give our readers an update and to ask if anyone else has had similar experiences or knows of someone who has. We encourage you to post a comment below and tell us about your experiences.
July 27, 2008 marked the eighth full month that my son has not used insulin. His last A1c was 5.9%, on July 9, 2008. On August 14th of this year, it will be one year since he was originally diagnosed with type 1. As you know, he was taken off insulin on November 27, 2007, about a month after getting the experimental drug teplizumab. I don't know if it is the drug or not, but others have taken it with good results. It will be interesting to see if they ever get the drug approved and can use it quickly on newly diagnosed type 1s.
I received some negative comments last time I wrote. I want to say that we should all be hoping for a cure and believing that it is possible. Some people believe that hope is dangerous or misguided—that it prevents you from dealing with reality.
I could not disagree more.
Imagine the medicine and products that would have never been created if everyone said it wouldn't work before it was even given a chance. Or if, at the first sign of failure, they quit and retreated, saying how they shouldn't have even tried. Look at the advances in medicine in the last 50 years alone - or even the last 20!
I choose to have hope, and, believe it or not, I can be hopeful and still deal with reality. If for some reason my son starts to need insulin again—while I hope and pray he doesn’t—we will deal with that.
Some people say that what my son is experiencing is a “honeymoon.” I have tried to do research on honeymoons, but there is not a lot of data and it is difficult to find information about the lengths of time. Some people consider a honeymoon a period where very little (or less than when first diagnosed) insulin is used. I would like to hear anecdotes from people about their "honeymoons" or lack of them, and what they were like, and how much (if any) insulin they used. I wonder if it was different for people who carefully controlled their diet after diagnosis—if that lengthened the honeymoon or caused a honeymoon.
Jul 31, 2008
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