Well it has been 4 years since we got a diagnosis of ketotic hypoglycemia. We have managed to stay out of the doctor's line of vision with the exception of the yearly "how are we doing" visit. Simeon has not had a true, dangerous episode since November of last year. Almost a whole year! Well, until Monday that is.
Simeon went to bed Sunday night complaining that his belly hurt. I assumed that he was fishing, as he always does, for an excuse to not lay down and go to sleep. Much like how desperately thirsty he manages to become at bedtime. I gave it no thought, told him to rest, and he'd feel better in the morning. He didn't. He woke me around 5am on Monday. His belly still hurt. Laying in the playroom and watching cartoons was certainly a perfectly reasonable remedy to a belly ache so those were the instructions he got. Not because I wanted to sleep a little longer, but because I knew it would help. Honest.
He began throwing up sometime around 9 and I began frantically trying to find someone to cover my shift at work. After the second time he vomited I knew where this was heading. I couldn't believe it. No one else has been sick. He never gets sick. I broke out the glucometer and ketostix.
Lesson in hypoglycemics:
Glucometer: Device used to test one's blood sugar.
Ketostix: Little test strips to evaluate one's urine for ketones.
Ketones in Urine= Ketonuria= Body has no sugar to break down, thus is breaking down fat instead.
Simeon's blood sugar was holding steady as equal amounts of gatorade went in and, eventually, came out. His ketones were between small and moderate, a normal value for him in a seemingly fasting state. Message with the metabolism nurse at Riley. Check! Simeon was allowed a banana rather than the yogurt he wanted and is now fully educated on the BRAT diet. He proceeded to later tell everyone that he ate a banana because he could only have that, applesauce, rice, or toast. It was pretty funny. Little sponge.
The day progressed with me trying to get a hold of someone at Riley who would inevitably tell us to come in. Sugar was down to 76, his ketones were now darker than the +4 "large" category on the little bottle. Sim became lethargic and fell asleep on my bed. At least he wasn't throwing up right? The whole thing sucked, just as I always imagined it would. I ended up finally talking with Dr. Stuy's nurse and the Dr. wanted Sim to come in for evaluation, fluids, and blah blah blah. Off we went.
The worst of it seemed to be over as soon as I drove through the gate in the parking garage. He chatted up the nurses who triaged him and followed obediently to our room in the ER. He talked baseball with the young resident who came in to treat him. He tolerated his zofran rather well despite the look of terror on his face as it dissolved. The fact that he saw so many doctors at a young age could have scarred him badly, but he always, always handles it so well. I can remember him screaming bloody murder over having his blood pressure taken at the neurosurgery office when he was 2, now he's getting compliments on how well he behaved getting his vitals done and finger pricked for a glucose reading in triage. Up to 88, by the way. We went home without IVs and with a script for zofran, since it seemed to help.
Days like that make me wish he was just a normal little boy, but in reality he could be so much worse off. I am thankful that we only have a small thing to deal with. I am thankful that he handles it so well, and that he is finally old enough to mostly understand what's going on when this happens. He can outgrow anytime from a year ago until around age 8. If not by then, he likely won't. I hope for sooner, rather than later.