Question from Hartselle, Alabama, USA:

My six year old daughter was diagnosed with reactive hypoglycemia yesterday by a nurse practitioner assisting an endocrinologist (not a pediatric specialist). We see the endocrinologist in December. She was hospitalized in October for hydration and pain management of a migraine, and was found to have a blood glucose level in the 180s or 190s mg/dl [10.0 to 11.0 mmol/L] and sugar in her urine. She had several handfuls of pretzels in the 45 minutes or so prior to the blood test, but had not eaten in probably 19 hours due to copious vomiting.

Several days later, she had a two hour fasting glucose tolerance test. She was 89 mg/dl [4.9 mmol/L] fasting; 199 mg/dl [11.1 mmol/L] at 30 minutes; 149 mg/dl [8.3 mmol/L] at one hour; and 90 mg/dl [5.0 mmol/L] at two hours. After we left, she was extremely hungry, so we got breakfast and she ate a giant muffin and drank a very large glass of milk in about two minutes with her hands shaking and teeth chattering (it was warm inside). Then, she wanted more to eat. She ate a plate of bacon and eggs and drank a very large orange juice and began to normalize. I can only guess that this was a low sugar time, but I had no glucometer.

A subsequent A1c and anti-GAD were 5.5 and 0, respectively. However, I received no instruction on how to manage her symptoms and the pediatrician had suggested she was hyperglycemic. She began Kindergarten in August and has been cranky ever since. She has cried and fussed about her panties being wet for several months and when I realized she was itching; the pediatrician gave nystatin for yeast. She has had a couple of occasions in the last couple of months of wetting her panties in her sleep and waking up to finish up in the bathroom.

She has been having total meltdowns, particularly within an hour of ice cream, candy, and maybe even just processed carbohydrates. Apparently, she has been sneaking candy from my kitchen for months (we don’t allow them much), but she begs for sweets of any kind daily, particularly just plain candy. She is hungry more and more frequently and she is quite angry and demanding with that hunger, striking at her brothers, kicking and screaming, and often whining and crying herself to sleep in the afternoon. I was given a glucometer by a friend and have no documented lows. Fasting numbers are always between 80 and 90 mg/dl [4.4 and 5.0 mmol/L]. However, she was checked at intervals after a pancake dinner and went from 94 mg/dl [5.2 mmol/L] premeal, to at 115 mg/dl [6.4 mmol/L] at 30 minutes; 127 mg/dl [7.1 mmol/L] at an hour; 149 mg/dl [8.3 mmol/L] at two hours; and 112 mg/dl [6.2 mmol/L] at three hours. She was crying at the 149 mg/dl [8.3 mmol/L] level, telling me she was sleepier than she had ever been.

The next morning, after a breakfast of cereal, she was 159 mg/dl [8.8 mmol/L] at 15 minutes after the meal. I have simply been checking her during meltdown times and didn’t know what else to do because I’ve had no professional guidance. I don’t know what a high versus a low would look like. She has also had increased fidgeting at school, to the point that the teacher called me at home because it was so excessive. She has always been able to sit still and attend without difficulty. So, we have no documented lows at all and now have a diagnosis of reactive hypoglycemia. I am unsure if this is accurate.

As I reflect on her little life, she has always eaten very aggressively (bottle feeding was this way) and particularly with things like cake at a birthday party; she goes at it like she’s getting a fix. She has also never had a solid bowel movement and often has to go after just a few bites of food. Her little brother has many of the same patterns. I have long had concerns about his demanding food, being hungry immediately after eating (in fact, he seems to be a bottomless pit but is average on a weight chart), shakiness in the mornings at times, and excessive non-solid stools. I have recently discovered he is a candy-sneaker, too. A couple of mid-day finger pricks at the pediatrician’s office have yielded normal results. I may be going off on a tangent, but they both have the foulest bowel movements and it is always diarrhea-like. We used yeast cream on my daughter and her younger brother for at least a solid year while they were in diapers.

I am wondering about some sort of enzyme deficiency or metabolic or immunological problem that might tie all this together. Their father has an undiagnosed blood sugar problem, which looks like reactive hypoglycemia, since his late teens. The stool patterns are similar. What might we be looking at? Do you think we are on the right path? Do you have other ideas about diagnostic measures we should be taking? Information on the Internet about reactive hypoglycemia in childhood seems to be confined to medical journals that I cannot access. I realize that her numbers are not dangerous, but the behavior that accompanies those numbers is extreme and upsetting to the entire family. The candy went in the trash this morning and we anticipate a major change in diet for the whole family. I would be grateful for whatever information you can provide or if you can point me to an accessible source about reactive hypoglycemia. The endocrinologist and the Children’s Hospital in our state neither had information about this topic.