January 6, 2020
Diagnosis and Symptoms, LADA and MODY
Question from Vista, California, USA:
My grandson was born with diabetes mellitus. Neither of his parents has diabetes, nor are there any genetic risks. Why would he be born with this? I have studied and found out it’s extremely rare, but I can’t find answers as to why? He is 15 months old and he hasn’t “grown out” of it. His mother was considered overweight at conception but took care of herself during her term. Any answers would be greatly appreciated. We also can’t seem to get his sugars balanced; he remains high despite advice from doctors to feed him with care. Are there experts on diabetes in southern California that we can see?
You are absolutely correct to be concerned since there is a rare genetic condition, MODY, that affects newborn and very young babies – and classical type 1 diabetes can be misdiagnosed and therefore mistreated with insulin producing the situation you describe in your question. This is diagnosable with genetic specialty blood testing but a general pediatrician may not be aware of this while a pediatric diabetes specialist will not only be aware but can get such testing done at special centers in the US and Europe. The expensive testing can often be done completely free of charge with special insurance requests for coverage as well as existing research grants readily available except for the special mailing fees to get the small blood sample shipped properly to Children’s Hospital of Philadelphia, for instance or to colleagues in Exeter, UK (among others). The ISPAD website https://www.ispad.org has more information about the free testing. If this were the type of rare diabetes that your grandchild has and it could be confirmed, then he might be able to be removed from insulin injections multiple times each day and switched to very safe pill medication daily that almost miraculously controls the blood sugar variability within a few days of the switch – so actually, it is rather important to think about and make the diagnosis.
It is important to speak to the child’s medical team and see if this has already been done; if not, then the pediatric team at the Los Angeles Children’s Hospital or any other of the large pediatric diabetes programs (UCLA, Orange County), etc., can make such arrangements, too.