When our six-year-old daughter, Bisi, was hospitalized last summer after being diagnosed with type 1 diabetes, part of the torrent of information we learned is that some patients have a diabetes honeymoon period, where the pancreas starts working again—though not perfectly—after diagnosis. The theory, in layman’s terms, is that the hard-working pancreas has given up the ghost, but then revives a bit after getting the rest that outside insulin injections provide.
Not all people enter a diabetes honeymoon period, but the majority do; in one study of 103 children under 12 with type 1 diabetes, 71 had a honeymoon. Francine Kaufman, the chief medical officer at Medtronic Diabetes who formerly ran the Center for Endocrinology, Diabetes and Metabolism at Children’s Hospital in Los Angeles, explained that whether a child has a honeymoon and how long it lasts depends on “a combination of virulence of the autodestructive process and when in the course of the disease the diagnosis is made.” In the hospital, Bisi’s doctors told us that a honeymoon period could last for a couple weeks, or months, or up to a year. Very rarely, they emphasized—strongly—does it last longer than that, and the diabetes honeymoon, like all honeymoons, inevitably ends.
Bisi started off at 4 units of Lantus a day—that’s one shot of slow-acting insulin that lasts about 24 hours in the background. She also receives Humalog, or fast-acting insulin, with her meals. In the hospital, to be conservative, they started her off at one unit of Humalog for every seventy grams of carbohyrates she ate. Over time, this ratio was adjusted downward, to a low point of 40 or 45 carbs per unit of insulin. Meanwhile, after some night-time lows, they adjusted her Lantus downward from 4 to 3.5 to 3 units a day.
We stayed at these numbers for maybe 6 weeks when suddenly, she started having unexplained lows. In particular, I remember one morning when we went outside the city for a hike. Bisi had had no Humalog with her breakfast, and we’d given her a yogurt snack, which is normally enough to keep her blood sugar adequately high, even if she’s active. At lunch we tested her, and she was 55. Fifty-five! She’d never gone so low before. (Her range is supposed to stay between 80-180.) The honeymoon had begun.
The thing is, it turns out that the honeymoon is actually pretty stressful. As Bisi’s diabetes nurse educator told me, “A honeymoon is a terrible name for it.” For the next while, we felt like we were constantly chasing Bisi’s lows—she’d have a series of lows, and we would reduce her dose. She’d have more lows, and we’d reduce some more. Slowly, by half units, her Lantus dose went from 3 down to .5; then it went down to a “small” half unit—this is such a tiny amount that it’s not even a real measurement on Bisi’s syringes. Meanwhile, her carb ratio went up, to a high of 60 during the day and 45 for dinner (many children need more insulin to cover their carbs at night). There have been a couple of weekends—times when we’ve been very active, when Bisi hasn’t eaten many carbs—where she hasn’t needed insulin at all. On those weekends, what a huge relief it’s been to not worry about Bisi going low when she’s skiing or playing for hours at a water park—because she had no insulin in her system, there was no danger of her going low. It’s been a relief for Bisi, too. Not long after she was diagnosed, I asked her whether having diabetes was better or worse than she’d thought it would be when we first learned about her regimen. “It’s worse,” she told me. “I didn’t know I’d be getting so many shots.”
At her peak, right after diagnosis, Bisi was getting six insulin injections a day (plus all the blood tests). Now, she still gets the blood tests, but she usually gets a maximum of three shots a day. Yet as my understanding of diabetes and specifically the honeymoon has evolved, I’ve realized that staying on a bit of insulin is important—both so Bisi doesn’t get confused and think that she really doesn’t need shots, and to protect her pancreas from burning out sooner rather than it otherwise would. If she’s getting a little bit of insulin, her pancreas won’t have to work so hard when she eats carbohydrates. This is essentially the point made to me by Kaufman when I asked her if there are ways to extend the diabetes honeymoon. The important thing, she said, is to “stay in good control, and don’t stop insulin injections. But beyond that, it is all out of someone’s control.”
Still, we couldn’t help but look into alternative ways of pampering her resurgent (though still very weak) pancreas. We already had her on a gluten-free diet, after my husband’s research turned up a study of a boy in Denmark who had been honeymooning for twenty months and counting after going gluten free. My husband also found a Canadian study of 42 people with T1D showing that “nearly half had an abnormal immune response to wheat proteins, while none of the 22 participants without diabetes had such a reaction. When the researchers looked for a genetic cause of the immune cell overreaction, they found that it was linked to a gene associated with type 1 diabetes…. According to the study’s authors, people with certain genes may be more likely to have an exaggerated immune reaction to foods like wheat, and this may spur other immune problems, like diabetes.” Bisi’s endocrinologist suggested we give her vitamin D, since there’s evidence that high vitamin D levels can extend the honeymoon. A relative who’s also an endocrinologist suggested that she take omega 3s. An herbalist suggested that she take fenugreek, burdock, and nettles to strengthen her pancreatic function. They won’t cure type 1 diabetes, he told me, but he believes that herbs like these can extend the honeymoon. Preserving the honeymoon is also a reason why we’re keeping Bisi relatively low carb—we don’t want to overtax her pancreas.
Are we beginning to sound like kooks? Sometimes I wonder. But from other parents I’ve talked to, the highs and lows of diabetes are much more difficult to manage once the honeymoon ends. At that point, from my understanding, when the pancreas stops working for good and insulin needs are much higher, you are subject to higher highs, lower lows, and more dangerous swings between them. Even though we sometimes do have to wake up to test Bisi in the middle of the night, those parents of children with diabetes whose honeymoon is over have to get up far more than we do—their kids are low, then high, then low again. If that is our future with Bisi, who can blame us for trying to delay it for as long as possible?
So we live in dread of what we’ve been told is the inevitable end of her honeymoon. Meanwhile, Bisi’s pancreas is sputtering along—I picture it as like the Vespa I once rode in Sicily—sometimes it’s speeding along faster than you’d expect, causing lows, other times it decides to conk out, causing highs. In the eight months since she’s been honeymooning, we’ve thought the diabetes honeymoon was over several times—usually after holidays, when it is very difficult to limit her sugar intake because desserts are plentiful, and everyone around her is eating a lot of them. (And I do think it’s waned a bit, since her insulin needs have climbed from her low of a small ½ unit of Lantus; though they are still much lower than they were when she was first diagnosed.) But, like the little engine that could, to use another metaphor, each time she starts producing a little bit of insulin again and her blood sugar levels go down.
Yet, according to at least one prominent expert in diabetes, Dr. Richard Bernstein, the end of the honeymoon period is not inevitable—though it’s very, very likely. Bernstein, a type 1 diabetic, is the inventor of the basal/bolus method of injections that Bisi and many other type 1 diabetics now follow, where you have one long-lasting “basal” shot each day (Lantus), and then other, short-acting “boluses” with your meals (Humalog). Bernstein was diagnosed with type 1 diabetes at age 12, and became a doctor in his late forties so he could better understand the disease that he felt was killing him through its complications. He sharply improved his health by switching to a low-carb diet to normalize his blood sugars. In his book Dr. Bernstein’s Diabetes Solution, he writes, “Based upon my experience with the fair number of type 1 diabetics I’ve treated from diagnosis, I’m convinced that the diabetes honeymoon period can be prolonged indefinitely. The trick is to assist the pancreas and keep it as quiescent as possible. With the meticulous use of small doses of injected insulin and with the essential use of a very low carbohydrate diet, the remaining capacity of the pancreas, I believe, can be preserved.” The problem, Bernstein explains, is that by the time someone has been diagnosed with T1D, at least 80% of their beta cells, the ones that produce insulin, have been destroyed. So all Bisi has to work with for the rest of her life are the less than 20% that remain. What’s more, high blood sugar levels are thought to be toxic to these beta cells, so unless you are able to keep very tight control of your blood sugar levels, these cells will burn out one by one. Dr. Kaufman pointed out that there’s ongoing research to figure out how to “allow the beta cells present at diagnosis to survive. But so far there is nothing that has been durable for a long time.”
Bisi is maintaining good blood sugar control; her last A1c level, a measure of how much sugar has been in your bloodstream over the past three months, was 6.2%, whereas the target for someone her age with diabetes is anything below 8%. (A child without diabetes should have an A1C between 4 and 6%.) But she is not maintaining the sort of tight control Dr. Bernstein is talking about—we just don’t feel like that would be sustainable for a young child. Her growing brain needs carbs, and she needs to have the freedom to eat more than just vegetables and protein. If she were old enough to choose to take such an approach, that would be one thing. But it doesn’t feel right to impose it on her. So for now, we’ll see if we can walk the fine line of protecting her remaining beta cells, while giving her enough of what she likes to eat. It’s hard not to have a tiny bit of hope that the diabetes honeymoon will continue and continue, but we also need to prepare ourselves that it won’t. Like a real honeymoon, we’ll try to enjoy it while it lasts.