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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\u2014though not perfectly\u2014after diagnosis. The theory, in layman\u2019s 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.<\/p>\n
Not all people enter a diabetes honeymoon period, but the majority do; in\u00a0one study<\/a>\u00a0of 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\u2019s Hospital in Los Angeles, explained that whether a child has a honeymoon and how long it lasts depends on \u201ca combination of virulence of the autodestructive process and when in the course of the disease the diagnosis is made.\u201d In the hospital, Bisi\u2019s doctors told us that a honeymoon period could last for a couple weeks, or months, or up to a year. Very rarely, they emphasized\u2014strongly\u2014does it last longer than that, and the diabetes honeymoon, like all honeymoons, inevitably ends.<\/p>\n Bisi started off at 4 units of Lantus a day\u2014that\u2019s 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.<\/p>\n 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\u2019d given her a yogurt snack, which is normally enough to keep her blood sugar adequately high, even if she\u2019s active. At lunch we tested her, and she was 55. Fifty-five! She\u2019d never gone so low before. (Her range is supposed to stay between 80-180.) The honeymoon had begun.<\/p>\n The thing is, it turns out that the honeymoon is actually pretty stressful. As Bisi\u2019s diabetes nurse educator told me, \u201cA honeymoon is a terrible name for it.\u201d For the next while, we felt like we were constantly chasing Bisi\u2019s lows\u2014she\u2019d have a series of lows, and we would reduce her dose. She\u2019d have more lows, and we\u2019d reduce some more. Slowly, by half units, her Lantus dose went from 3 down to .5; then it went down to a \u201csmall\u201d half unit\u2014this is such a tiny amount that it\u2019s not even a real measurement on Bisi\u2019s syringes. \u00a0Meanwhile, 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\u2014times when we\u2019ve been very active, when Bisi hasn\u2019t eaten many carbs\u2014where she hasn\u2019t needed insulin at all. On those weekends, what a huge relief it\u2019s been to not worry about Bisi going low when she\u2019s skiing or playing for hours at a water park\u2014because she had no insulin in her system, there was no danger of her going low. It\u2019s been a relief for Bisi, too. Not long after she was diagnosed, I asked her whether having diabetes was better or worse than she\u2019d thought it would be when we first learned about her regimen. \u201cIt\u2019s worse,” she told me. “I didn\u2019t know I\u2019d be getting so many shots.\u201d<\/p>\n 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\u2019ve realized that staying on a bit of insulin is important\u2014both so Bisi doesn\u2019t get confused and think that she really doesn\u2019t need shots, and to protect her pancreas from burning out sooner rather than it otherwise would. If she\u2019s getting a little bit of insulin, her pancreas won\u2019t 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 \u201cstay in good control, and don\u2019t stop insulin injections. But beyond that, it is all out of someone\u2019s control.\u201d<\/p>\n Still, we couldn\u2019t 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\u2019s research turned up a study of a boy in Denmark<\/a> who had been honeymooning for twenty months and counting after going gluten free. My husband also found a Canadian study of 42 people<\/a> with T1D showing that \u201cnearly 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\u2026. According to the study\u2019s 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.\u201d\u00a0Bisi\u2019s endocrinologist suggested we give her vitamin D, since there\u2019s evidence<\/a>\u00a0that high vitamin D levels can extend the honeymoon. A relative who\u2019s 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\u2019t 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\u2019re keeping Bisi relatively low carb\u2014we don\u2019t want to overtax her pancreas.<\/p>\n Are we beginning to sound like kooks? Sometimes I wonder. But from other parents I\u2019ve 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\u2014their kids are low, then high, then low again<\/a>. If that is our future with Bisi, who can blame us for trying to delay it for as long as possible?<\/p>\n So we live in dread of what we\u2019ve been told is the inevitable end of her honeymoon. Meanwhile, Bisi\u2019s pancreas is sputtering along\u2014I picture it as like the Vespa I once rode in Sicily\u2014sometimes it\u2019s speeding along faster than you\u2019d expect, causing lows, other times it decides to conk out, causing highs. In the eight months since she\u2019s been honeymooning, we\u2019ve thought the diabetes honeymoon was over several times\u2014usually 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\u2019s waned a bit, since her insulin needs have climbed from her low of a small \u00bd 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.<\/p>\n Yet, according to at least one prominent expert in diabetes, Dr. Richard Bernstein, the end of the honeymoon period is not<\/em>\u00a0 inevitable\u2014though it\u2019s 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 \u201cbasal\u201d shot each day (Lantus), and then other, short-acting \u201cboluses\u201d 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\u2019s Diabetes Solution<\/em><\/a>, he writes,\u00a0 \u201cBased upon my experience with the fair number of type 1 diabetics I\u2019ve treated from diagnosis, I\u2019m convinced that the diabetes \u00a0honeymoon 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.\u201d 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\u2019s 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\u2019s ongoing research to figure out how to \u201callow the beta cells present at diagnosis to survive. But so far there is nothing that has been durable for a long time.\u201d<\/p>\n