Thursday, March 28, 2013

The Loneliness of T1D

Yesterday, Mark, Jamie, and I each got separate letters from the Joslin Diabetes Center saying that the results of our screening tests for type 1 diabetes were negative. This does not mean that we are totally in the clear, but still, it's good news. In the words of the letter: "This means that no diabetes-related autoantibodies are present in your blood at this time. This is not a guarantee that you will never develop diabetes. It does mean that you are currently at lower risk than if you tested positive." If one of us had tested positive, they would have done more testing, including a glucose test like the one they give to pregnant women, where you down a very sugary drink, and then are tested to see how you process it. If, after that second round of testing, we were still deemed to be at high risk for developing T1D, we would have been eligible for a clinical trial, testing whether ingesting small amounts of insulin helps to stave off the disease. Mark and I are now permanently ineligible for the study; Jamie could still be tested each year to see if his autoantibody status has changed--ie, to see if his immune system has started attacking the beta cells in his pancreas.

Of course, Mark and I agonized over whether Jamie should do the test. Would it scare him? Would he start worrying that he, too, will get diabetes? How would Mark and I handle the news if he tested positive? What would we tell him? In the end, we decided that if he is prone to getting diabetes, we didn't want to be blindsided by it, as we were by Bisi's diagnosis. And if there's a chance that this study would delay the potential onset of T1D, we wanted to know that we'd done everything we could. In explaining the clinical trial, we told him that this could help push T1D research forward, and therefore might help his sister.

The day of the test, Bisi was pretty thrilled to see the three of us get blood tests while she could just sit by and watch. (It reminded me of when Jamie and Bisi got their flu shots this year; he was eligible for the flu mist and was begging for it, since he didn't want the injection. Bisi was not technically supposed to get the live vaccine that's in the mist, since her immune system is a bit compromised by the diabetes, but the nurse told me it was probably fine, and it was my choice. What would you have done?? I decided that both would get the shots, and Jamie immediately started to sob. Bisi got hers, as cool as a cucumber, and then watched with a cheshire cat grin while Jamie cried and got his. Afterwards, he admitted that it wasn't so bad.)

For all of our anxiety about whether to do the test and how it would affect Jamie, he seemingly hasn't thought one bit about it in the six weeks since. He's never asked what the result was, or mentioned it in any way again. Mark and I are thrilled that, at least for now, we can banish this one worry from our thoughts. But for Bisi, I feel that this "all clear" news is more mixed. Having T1D sets Bisi apart--sets her apart from her friends and from her family. In some ways I think that the extra attention she gets through the diagnosis makes her feel special--friends walk her down to the nurse, she gets a special pink card to save her place at the lunch table since she's often late because of the blood sugar testing and insulin dose. But the diagnosis makes her feel lonely too. We've tried to do what we can to remedy this: Bisi and Jamie have a favorite babysitter who has T1D; we've set up playdates with other kids with T1D; we all usually eat the same meals, and, as I've mentioned, Mark has gone gluten free in solidarity with Bisi. (Bisi recently said she wanted the whole family to go gluten free, but I see no reason to force this on Jamie; and I'm not ready to give up all the delicious things that have gluten--though I do try to avoid them when Bisi's around. The most difficult challenge so far has been not ordering the amazing homemade biscuits at our favorite BBQ place.)

None of this makes up for the fact that Mark, Jamie, and I have no idea what it feels like to have this disease--the sharp hunger when she's low, the listless tiredness when she's high, and the emotions caused by the swings in between the two extremes. Most of the time when your child is going through something, you can tie it into your own childhood experiences. You can help them work through it because you understand just how they feel. Bisi feels this absence keenly, even though she's only expressed it a couple of times. Once she asked whether our new dog, Cinnamon, might get T1D. Another time, she was talking with our friend Rachel, who has asthma, as does her son, Owen. Bisi asked all kinds of questions about asthma and then said about Owen: "He's lucky. I think it's nice that someone else in his family has what he has." So for now, there won't be any discussion in our house of the results of those blood tests. Why would we want to rub it in?

Tuesday, March 12, 2013


When Mark pushed me to have Bisi go gluten free, his goal was to get her into a “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 honeymoon period, but the majority do; in one study  of 103 children under 12 with T1D, 71 had a honeymoon. 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 carbs 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 to Gloucester 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, and for a diabetic, anything below 70 is considered worrisome. (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, and when she perhaps has had a low-grade illness pushing her blood sugar down—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.

Once Bisi started honeymooning, we looked into other ways aside from the gluten-free diet of pampering her resurgent (though still very weak) pancreas. Her 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 I’ve complained here about having to get up in the middle of the night to test Bisi, 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? (Sometimes the testing process at night goes perfectly, Bisi doesn’t wake up, and her blood sugar is at a comfortable 150. Other times, we have to poke around a while to get a big enough drop of blood. On one such night, Bisi roused slightly and said something that sounded like “Fooooouk.” “What did you say??” I asked her. “Foooouk.” I’m still not sure what she was saying, but if she was dropping the f-bomb, who can blame her?)

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 five months since she’s been honeymooning, we’ve thought the 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. 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 T1D 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 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.

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 6.3, 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 percent.) 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 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.

Honeymoon Sundaes

Okay, neither of these really qualifies as a sundae. But both are relatively low carb, yet delicious enough to feel like a special dessert.

Sliced strawberries, topped with whipped cream (heavy cream that you whip up yourself, not the stuff in a can), flavored with a tiny bit of honey.

Frozen blueberries with ½ and 1/2, with a little bit of cinnamon sprinkled on top.

Thursday, March 7, 2013

Even More on Sugar

A couple weeks ago I wrote about some of the lower-sugar products we've come to rely on, including Oikos Organic strawberry, blueberry, and vanilla yogurt. This week I had a rude shock at the grocery store, when I found that Oikos Organic has been rebranded as Stonyfield Greek, and that in the rebranding process, both strawberry and vanilla yogurts have gone up in carbs (strawberry from 16 to 19; vanilla from 9 to 10). Okay, they've only gone up by a carb or two, which is a small amount even for Bisi. But one carb can send her blood sugar up by six to ten points, depending on the time of day, so it does matter. And I was annoyed in principle. So I emailed the company asking why the carb counts had changed, and quickly got this response:

Hello Katie,

Thanks for reaching out to us about Strawberry Greek organic yogurt. We
added a little more fruit and flavor to our strawberry and vanilla
Stonyfield Greek Yogurts to make them even more delicious. These slight
adjustments changed some of the nutritional information, like the carb and
sugar amounts, just a little bit.

Thanks again for getting in touch. If you ever have another question please
give us a shout.


The folks at Stonyfield

I was glad they responded so quickly, but their response--essentially that they added a little more sugar to make these two kinds of yogurt even more delicious--annoyed me even more. I buy this yogurt specifically because it's *not* as sweet as others, so I don't want sugar added to make it "more delicious."

My mom had a similar experience with her favorite cereal, Kellogg's Special K Protein Plus, which she buys specifically because it's high in protein (10 grams) and low in sugar (2 grams). This summer, she noticed an ominous new banner on the box saying, "Now tastes EVEN BETTER!,"  and realized that they'd more than tripled the sugar, to 7 grams. When she wrote the company, they responded that they were just providing what people wanted.

The thing is, what about the market--it can't be negligible--of people who buy products specifically because the sugar is low? I'm curious how many products over the last year or two have bumped up their sugar to try to bump up their sales? Have you noticed any? I'm going to do my tiny part to show them they have the wrong idea. From now on, when I buy strawberry yogurt, I'll ditch Stonyfield's 19 carbs for Smari's 14. Let's just hope Bisi likes it as well.