There are doctors out there who still insist hypoglycemia doesn’t exist as a separate diagnosis. There are plenty of other people, professionals and not, who deny it as well. This can make it a tricky condition to live with. Now to add another layer of ‘fun’ make the person with hypoglycemia an infant, and even better, one who is autistic and has trouble communicating. How do you manage something as intangible as blood sugar in a child who cannot speak and for whom sticks and gluco checks will require several adults to accomplish? Join me in our journey below the fold.
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When I was pregnant with my son, my blood sugar kept dropping dangerously. Before I became pregnant I’d had no sugar issues at all, but suddenly my sugars were reading consistently in the 40-65 range. I was always hungry, and keeping my sugar in safe levels became a huge chore.
And then my son was born. It was a long and difficult labor ending in a c-section. He was just shy of 10lbs and 25 inches long, and was born on his due date. Within 10 hours he was whisked away to the NICU because we couldn’t get him to wake up and eat. I didn’t find out until about 2 years later that his blood sugar had dropped to 0, they just told me it was low. Despite recovering from surgery I walked to the NICU to nurse several times a day for the three days he was there. We went home finally with instructions to feed him every 2-4 hours, even if I had to wake him at night to do so.
At his first Pediatric visit his doctor instructed me on caring for a hypoglycemic infant. I remember him saying “I don’t care what any dentist or any other doctor tells you, when he gets older he goes to bed with a bottle or a cup. If he doesn’t have access to food during the night he won’t wake up in the morning.” I think those words were what made me fully realize just how serious this issue was for my child. A lot of ‘parenting advice’ went out the window.
As he got older and started on solid foods, he still ate more frequently than other children his age. Even as a toddler, I kept food available. A bowl of cheerios on the table where he could snack as he wanted, more frequent snacks like fruit throughout the day became common routines. The whole “don’t give your child snacks right before meals” was one of the common parenting tips I had to throw away. So was not giving him snacks while we shopped. How do you tell with a toddler whether they are throwing a tantrum because they want something or if it’s a low sugar reaction? I didn’t give him candy and junk, but I didn’t make him wait to eat either. Even so, there were times when he’d sleep too long, or it would get hot and he’d burn sugar faster than expected and we ended up in the ER with him getting IV Glucose.
Potty training was more difficult, especially overnight. You know that old adage about not giving a child anything to drink after 7 while you're potty training? Yeah, another bit of "parental advice" out the window. He potty trained late, partly due to the as yet undiagnosed autism and partly because of his hypoglycemia. Even then, water proof mattress pads and "Good Nights" were staples, and he bathed in the morning not before bed. Accidents were the norm, not the exception.
When he was 4 he attended Head Start. They had the brilliant idea that if he misbehaved they were going to withhold his snack in the afternoon. (This is the same time period when the autism spectrum was first raised as well.) With hold the snack, and his behaviors only escalated, because his sugar would drop. I started bringing a snack with me when I picked him up so it wouldn’t drop too low in the car. I tried bringing them a note from his doctor, I tried having his doctor call them, nothing changed. This was the method they used with all the kids, and they weren’t going to make an exception for my son, never mind this method only made him worse. There were many days when I had to leave work early and go pick him up because his behaviors were out of control, including self-injurious behaviors like biting himself or getting away from them and running into the street. He would also go into rages and destroy the classroom. Some of that was the autism, but it was escalated by the hypoglycemia.
The following year he attended TwigBenders, a full day behavioral therapy program. He wasn’t diagnosed autistic yet, but we knew there was a problem. But, as it was run by medical professionals (therapists) and not day care teachers, his sugar issues were taken much more seriously and we had fewer problems with sugar dips that year. He was also learning, gradually, how to make good food choices, and how to communicate when he wasn’t feeling right. He knew when he needed to eat and we listened to him. I kept half sandwiches in ziplocks in the fridge, so if he got hungry, he went and got one (PB&J became a staple, quick sugar, carbs, and protein all in one). Even if I was making dinner he was allowed to get a sandwich, because he could not always wait the 5-10 minutes for me to finish cooking, he also always ate all of his dinner, we never had a problem with him not eating. At least until they tried putting him on Prozac for his behavioral issues. Oh, Prozac calmed the behavioral issues, but he was doing nothing but sleep, even on the playground. We ended up in the hospital again because I couldn’t wake him up to eat. That med lasted a week. That year was better so far as his sugar went but it was very trying in everything else as they tried to find a med to help him with his other issues.
Next came elementary school. Most of his regular teachers were good. They followed his dietary restrictions (no milk, added snacks). Substitutes were another story. They didn’t always listen to the aides about what the kids needed. It was manageable still so long as he had a ‘normal’ lunch period. But the years his class was stuck on early lunch (10:15am) were much trickier to manage. By 2pm his sugar would be dropping off again, earlier if it was really hot or he had PE after lunch. And if he didn’t get a snack around 2, by the time he got off the bus (4-4:30) he’d be stumbling and near comatose. Several more trips to the ER ensued; I started carrying glucotabs to the bus stop just in case. One extended substitute teacher in third grade accused him of ‘avoiding math’. When I asked why she thought that, she said he was whiny and complaining he was hungry and had to eat. They did math at 2pm every day. She hadn’t bothered to read the IEP’s of the students. She insisted on a new Doctor’s note, even though one was on file already. Even with that, she was not consistent with giving him the snacks I sent in, and she’d often call me to argue that it wasn’t fair to the rest of the class. She didn’t like my response of medical need trumping fairness.
As he got older he learned more about how to take care of himself. He was getting better at refusing milk, even when someone tried to push it on him. He was getting better about making good choices so far as what he ate and keeping his sugar balanced. I didn’t keep a lot of high sugar snacks in the house and what I did have were out of his reach so he couldn’t over indulge. I’m glad he’s not allergic to gluten like he is to Casein. I don’t know how we’d manage without bread and pasta. We’ve home schooled him since 6th grade for a variety of reasons, so we no longer had to deal with school lunch schedules and snacks. Without a car, we walk or take the bus everywhere, and often we have to stop for a drink and a snack. Even at a convenience store he’s gotten good about keeping himself balanced. He’ll choose gator-aid or juice over soda and a bag of peanuts over a candy bar.
Now he’s 17. He still gets up and eats during his sleeping hours sometimes. He keeps a drink in his room at least. I almost never have to step in and wake him up to make sure he eats, unless he’s sick. He manages his condition now. He knows how to test himself, though he hates it and probably doesn’t do it as often as he should. He knows how to eat to keep his sugar stable, and he understands the dangers of letting himself get out of balance (trip to the ER, or throwing himself into diabetes as he gets older).
I still worry though. I worry what’s going to happen when he enters the working world. Will he be allowed to take breaks to eat when he needs to? Will he be capable of standing up for himself and making sure he gets those breaks or will his boss intimidate him into pushing himself too far? The work world out there is tough right now, and he’s likely to have issues with work due to his other issues. Is his hypoglycemia and need to eat every few hours going to hold him back further? He has two years before he graduates high school because of that one year of TwigBenders when he would have been in kindergarten. Maybe, just maybe by that point things will be a bit better. At least, if it isn't repealed, the ACA will be in force and he’ll be able to get health care. A mother can hope, right?