From Bakersfield, California, USA:
Finally, after three years of issues and testing, my five-year-old son has been diagnosed with MODY2. But, my confusion comes in dealing with new doctors, Emergency Room (ER) doctors, and others. Not very many people know about MODY. When telling others and filling out paperwork, how do I tell them what it is? How do I explain it?
Originally, we were told he was pre-type 1. At that point, it was easy to tell everyone he was in a honeymoon phase and we were just watching and waiting. Now that has changed and we have a whole new game plan and name and everything. While it is confusing to me and my family and we are trying to make it easier on my son, we don't want to have to sit for hours and explain to every ER doctor and specialist (he sees several) exactly what MODY is. When telling others and filling out paperwork, how do I tell them what it is? How do I explain it? What do I call it? How do I tell them it is neither type 1 nor 2?
I should add that my son makes frequent trips to the ER and Urgent Care, and sees several specialists. Would it be better to type up a basic description and information sheet on it for these instances and keep it handy to take with us and give to the doctors? If so, what should be included?
I think that you should ask these specific questions to his diabetes team since they can give you specific advice. In general, a half page information sheet would be great for unknowing medical staff in emergency situations. It is best to provide a simple explanation of what MODY is, what treatment usually requires and, also, what other medications or other diagnoses he also has. Also, you should include who to call from the diabetes team for emergency consultation. I would simply call it what it is and provide a brief explanation. In emergency situations, he may actually require insulin so that your diabetes team will also know how such situations have been handled in the past and what to recommend.
Original posting 25 Jan 2007
Posted to LADA and MODY
Last Updated: Tuesday April 06, 2010 15:10:09
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