Justin Delgado is husband to Kacie Doyle-Delgado, diagnosed at age 11. After more than a decade together, he considers himself to be an expert carb counter and Dexcom inserter. He graduated with his Master of Science in Finance from the University of Utah in 2013 and has been working in commercial banking since then. He attended his first Friends for Life conference in 2015 and is looking forward to volunteering with the teens.
April 16, 2001
Diagnosis and Symptoms
Question from Maryland, USA:
Our four and a half year old son has several undiagnosed abnormalities and is being followed by a pediatric neurologist. His EEG is abnormal yet does not present a typical seizure pattern. He has moments of unexplained rage (is usually very sweet), has developmental delays, and, at the age of 25 months, he could no longer stand or walk for three weeks. This is when we met his pediatric neurologist. Before they could determine anything, he resumed walking. He also has a movement disorder which looks like a complex motor and vocal tic, yet a Tay-Sachs specialist has ruled out Tay-Sachs. We noticed he is asking for food during his movements (which last anywhere from 3 seconds to 20 minutes), so his pediatrician ordered a blood glucose level which was normal. Since he gets dazed, confused and sometimes pale before the movements, we can predict their onset., so we bought a home blood glucose meter and noticed a pattern. Prior to the movements his readings are anywhere from 80-97 mg/dl [4.4-5.4 mmol/L]and immediately after the movements they are in the range of 123-130 mg/dl [6.8-7.2 mmol/L] (anywhere from 10 minutes to 45 minutes passes between these readings). He is taking seizure medication which has his seizures under control, so we are unable to get readings regarding before, during and after seizures. Sometimes before the movements he looks like he is in a panic and is asking for lemonade, juice, bread. Do you think it is worth pursuing? If so, what type of doctor should we see?
I think that the problems you are describing are not likely to be due to problems with blood sugars. I would suggest reviewing blood sugar results with your son’s pediatrician. I think your best resource for determining his underlying problem will be your pediatric neurologist. It might also be time for a consultation at an academic referral center with a neurodevelopmental specialist.