James Ron is an American, Israeli, and Canadian academic, whose son, Sacha, was diagnosed with type 1 diabetes in 2009 at the age of two. Until then, James had never heard of the disease. Today, James is a member of the scientific and advisory group of Life for a Child, an Australia-based charity that supplies insulin and other diabetes supplies to children and youth in the developing world. James teaches international affairs and human rights at the University of Minnesota, and lives in Minneapolis with his wife, Emma, and their two children, Tessa and Sacha. Read full bio

When An Evening Walk Turns Scary

A few nights ago, my six-year old son Sacha and I took our dog Molly for an evening walk. Somehow, I managed to walk out the door without his diabetes kit; no blood glucose meter, no juice, no glucagon. That almost never happens, but that night, it did. Rookie mistake. 

Sacha happily ran around for a while, climbing on, and jumping off, stone walls along the way. He was having a blast. 

Suddenly, he stopped, and whispered that he was very tired. No more running or jumping. He just stood there.  ”He’s low,” I realized, and reached for the diabetes kit.

It wasn’t there.

I pulled his Continuous Glucose Monitor out of his belt to see where things stood, but it was blinking an out-of-order message: “Replace Sensor.” Damn; a perfect type 1 diabetes storm. 

We were about 10 minutes away from the house, if we were to walk back, or five minutes if we could run. What to do? It was dark and the streets were empty,  although the nearby homes still had lights on. It was only about 8 pm on a chilly fall night in Minneapolis. 

I made a move to sling Sacha over my shoulder and make a run for it – he’s only 55 pounds – but he bravely refused, reminding me that I had recently had lumbar fusion surgery, and wasn’t allowed to lift much weight. He was right; 55 pounds might do real damage.  

I called my wife at home, hoping she could jump in the car with the blood glucose monitor and a box of juice. She didn’t pick up; her cellphone must have been in another room. We don’t have a landline. We had a houseguest over, so I called her cell. She wasn’t picking up either.

I didn’t know what to do. Call an ambulance? Seemed like a big move, given that I really didn’t know what my son’s blood sugar was. I didn’t want to subject him to all that fuss if he didn’t need it. He had a seizure last year, I called an ambulance, and the ensuing paperwork took an hour.  

Should I go and knock on someone’s door, and ask for juice? Again, I wasn’t sure that was the right thing to do. (It was – more later).  

I decided to try and walk slowly back home together. I kept talking with Sacha, asking him repeatedly how he felt. When he angrily asked me to stop, I figured he might be well enough to get home. 

We made it back within 10 minutes. There in the entrance to the house was his diabetes kit; BG meter, juice, glucagon. I quickly tested his blood, and found that his glucose levels were low – 75 – but at least not in the 50s.

Sacha quickly drank the box of juice, and just like that, the crisis was resolved.  

I think back on those few minutes now, and kick myself for not being more proactive. I should have knocked on a neighbour’s door, and asked for a glass of juice. Why didn’t I? Perhaps I didn’t want to make a scene? Perhaps I wanted to save Sacha embarrassment?

Worse, perhaps I was ashamed I would have to tell a neighbour that I had walked outside, in the night, with a six year old suffering from type 1 diabetes, without proper equipment? 

Every day, every night, every minute, my wife and I, our caregiver and Sacha’s teachers, are next to him with BG monitor, juice, and glucagon. Once in a blue moon, one of us forgets. This time, nothing adverse happened; no seizure, no damage, no hospitalization.  

Please, don’t let me forget his kit again. And if I do forget, please don’t let anything happen to him. 

Raising a child is always a huge responsibility. Type 1 diabetes makes it so much more so. Most days, I don’t think about it much.

But every now and then….

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Should Parents of Children with Type 1 Diabetes Celebrate Their HbA1c Scores?

Yesterday my six year old son with Type 1 diabetes, Sacha, was at the Children’s Hospital in St. Paul, Minnesota, for his quarterly checkup. My wife went with him, and sent me a text from the road: “His HbA1c is xx!” It was a great number.  

HbA1c is the figure people with diabetes use to track how well they are doing. It provides a three-month average of blood glucose control and should, ideally, be under 7.0. It rarely is, of course, but the more people with diabetes keep their HbA1c figures in the zone, the less likely they are to suffer medical complications later on.  

I was thrilled with Sacha’s excellent score, since the whole family works so hard at controlling his blood glucose.

It starts with Sacha himself, who never eats without telling us, and who always waits patiently for a blood glucose test and insulin dose before the meal begins; it continues with his rapidly maturing 10-year old sister, Tessa, who has learned not to try and sneak him food, and who doesn’t fuss much when we impose limits on them both; it continues with our wonderful 21-year old caregiver, Katie, who helped out all summer, carefully checking Sacha’s sugars under all kinds of conditions; and it ends with my wife Emma and myself, who make sure the whole system runs smoothly, buy the diabetes supplies, do the insulin pump and Continuous Glucose Monitor insertions, and check Sacha’s blood sugars twice a night, every night, at 11:30 pm and 2:30 am, and often more. All those sleepless nights of reducing blood sugars with insulin or, conversely, raising his sugars with juice, Glucerna, or other late-night snacks. 

There is something awful about talking publicly about a good HbA1c, however. So many parents, siblings, and kids pour their hearts and souls into controlling blood glucose, but still don’t get good HbA1c results, for whatever reason. Bodies vary at different times of life and the year, and can easily defeat the best of all-family efforts. Love, attention, and watchfulness are no guarantee of success. When Sacha was first diagnosed over four years ago, we struggled to keep things under control, and had more than a few high HbA1c scores too.    

In even more cases, parents don’t have the wonderful diabetes management resources we do, such as an expensive insulin pump and Continuous Glucose Monitor, rapid acting insulin, and the resources to afford summer help so that we can do other things during the day.

This resource problem is a big one even in developed countries like Canada and the US, where there is still so much poverty and, in the US, lack of basic health care. It is an even bigger one in countries with much less wealth and physical or medical infrastructure.

I’m working now with a team of researchers studying the HbA1c results of kids with Type 1 diabetes from low-resource families in central India, and we’ve found that their numbers are often quite poor. They receive charitable help from wonderful doctors and donors in India, but they labor under extraordinarily difficult conditions. They often have no money for blood glucose tests, no refrigeration for their insulin, and no ability to speak with their medical providers on a regular basis. High-tech insulin pumps and Continuous Glucose Monitors are out of the question.

Unfortunately, many of these kids are likely to develop severe, diabetes-related complications when they get older, even though they are the lucky ones enrolled in a charitable program. After all, kids from low-resource families in the developing word often die shortly after developing Type 1 diabetes, typically without ever being diagnosed. 

HbA1c is thus a marker of achievement, but also one of luck and privilege. Sacha was horribly unlucky to get the disease at the age of two, but was incredibly fortunate to be born in Canada, and to be now living in the US. He was even luckier to have been born into a family with health insurance and sufficient income to hire help.

Parents like us probably should celebrate the family’s achievements; we all worked really hard, together, to get Sacha’s HbA1c into the zone. We should also keep trying to remember, however, and to regularly discuss with our kids, how much our “success” was due to sheer luck and raw privilege.   

And we must also keep this in mind; to reduce the probability of developing complications, Sacha must keep getting decent HbA1c numbers every three months, every year, for the rest of his life. It’s comparatively easy now, while he’s still young, under our care, and watched constantly – even while he sleeps – by those who love him most. 

Once he starts living on his own, preparing his own meals, and handling his own insulin doses and blood glucose tests, it’s another game entirely. 

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Other Wonderful Groups Around the World Helping Children with Type 1 Diabetes

So what are some of the other groups doing wonderful charitable work for low income kids with type 1 diabetes in the developing world? I’ve met a few, and have been humbled and amazed. 

In Monterrey, Mexico, Laura Gutierrez Cruz created and still runs Regalando Vida (Gift of Life), a fantastic program of the Mexican Diabetes Association in the northern state of Nuevo Leone. Parts of Monterrey are extremely wealthy city, but it has its fair share of severe poverty, and has also suffered terribly from drug-related violence.

Laura has mobilized local donations from Monterrey corporations, individuals, foundations, and others, and benefits from the kind services of Dr. Oscar Flores, a paediatric endocrinologist who also has type 1 diabetes. Together, Laura, Oscar, and her team of dedicated diabetes educators help the families of over 100 children from local, low income families. She commissions a detailed analysis of each patient’s socio-economic condition, and makes sure that those who are truly in need get regular supplies of insulin, syringes, and four test strips per day, as well as superb nutritional and other diabetes education.

The program’s kids seem to be doing really well, and it’s all due to Laura’s remarkable passion. She is in her 40s, has a family of her own, and maintains her own successful professional career. But as a type 1 diabetes survivor herself, Laura is utterly committed to helping less fortunate kids in her city survive and flourish. I’ve visited her organization twice, and was utterly humbled by what she’d managed to accomplish.

Happily, Life for a Child now gives her program some modest support, in coordination with the Mexican Eli Lilly Foundation

Another great set of diabetes heroes are the Guptas, a remarkable Indo-American couple. They retired several years ago from distinguished medical careers  in St. Louis – Santosh is a paediatric endocrinologist, and JK is a cardiologist. They now spend a few months each winter in Haridwar, India, a Hindu holy city located five hours drive north of Delhi.

In Haridwar, Santosh and JK volunteer in a local hospital run by the Ramakrishna mission, a religious and charitable order that tends to India’s poor, and operates hospitals across the country. Santosh has spent the last few years training Ramakrishna physicians and nurses on the basal/bolus system common in the US, and her colleagues typically use the best insulins and other management tools. 

All this costs a comparative fortune in India, so Santosh and JK have created their own charity, the Manav Seva Foundation, to raise funds for insulin, test strips, A1c tests, and other basic tools. Santosh gets some of her insulin from the Insulin for Life Foundation in Australia, which collects unused insulin from individuals and corporations. Incidentally, there are other Insulin for Life organizations around the world, including one in the US; I’ve sent them unused insulin and strips before. 

The Guptas are in their 70s, but are as fit as fiddles, and the most optimistic, happy people I’ve ever met. I visited them once in Haridwar, and joined them on one of their morning walks; they really go at a fast clip!

I am in awe of this couple, leaving their retirement home in Naples, Florida each year to work long hours, for months at a time, in a city whose creature comforts are comparatively limited. 

For me, the Guptas are a shining example of how to use one’s retirement, giving to others after having had so much of their own personal success. When I’m in my 70s, I hope I’m healthy enough, and brave enough, to be like them. 

In Rabat, Morocco, the wonderful Badil Association led by Dr. Amina Balafrej, a paediatrician, cares for some 700 kids with type 1 diabetes, most of whom come from low income families. I visited once for Life for a Child, which extends Badil some support, and wrote about them earlier in this blog. 

Another wonderful group in India is the DREAM Trust run by Dr. Sharad Pendsey, a diabetes physician who cares for some 500 kids and youth with type 1 diabetes in Nagpur, central India. I’ve visited him twice for Life for a Child, and have written about his work previously on this blog. Sharad is a great man, and his collaborator, social worker and diabetes educator Seema Chalkhore, manages this huge program almost singlehandedly. 

These are only a handful of the fantastic groups doing wonderful work for children with type 1 diabetes worldwide. I’ve gotten to know them all through Life for a Child, a growing global hub for the charitable type 1 diabetes movement.  

This weekend, my six year old son, Sacha, promised me that when he grew up, he’d spend time contributing to Life for a Child or another group like them. He increasingly understands that his insulin, pump, continuous monitor, and ten strips a day are a rare privilege. Type 1 diabetes makes his life so difficult, but he’s also alive and well thanks to everything that our family, and the developing world as a whole, has to offer.  

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My Type 1 Diabetes Hero

Last week, the American Diabetes Association awarded Dr. Graham Ogle, manager  of the Australia-based Life for a Child program, an award for distinguished international service. Ogle’s group uses charitable donations from individuals, foundations, and corporations to help over 10,000 children with their basic type 1 diabetes needs, including insulin, syringes, test strips, and educational materials. 

Some 450,000 children in the world are known to have type 1 diabetes, and roughly half of these kids live in the developing world. Many more thousands probably die each year without their affliction ever being  diagnosed, registered, or acknowledged. We have no accurate data on the true incidence of type 1 diabetes in many countries around the world.  

It’s wonderful that groups such as the JDRF and the ADA raise money for research on the artificial pancreas and a cure. My son will benefit from those advances, and I pray that these groups will be successful.

Yet if and when these innovations occur, many children in the developing world will not benefit for years to come, if ever. 

Insulin pumps are great; my six year old has one. So is his Dexcom CGM, which has reduced our anxiety greatly. The former costs over $7,000 USD, however, and the latter costs about $1,000 USD. The weekly maintenance costs, moreover, are huge.

Last week, my son mistakenly jumped into the pool with his Dexcom on. The company graciously gave us a huge discount, but a new receiver still cost $250.

I know that many children in the US, Europe, Canada and other wealthy countries have difficulty meeting their diabetes needs. Still, things are so much worse in the developing world, where even the fortunate middle classes can’t afford pumps, CGMs, and expensive analogue insulins.

And when the artificial pancreas finally arrives in 5-7 years, they’ll only be able to read about it online. 

In the short, medium, and possibly long term, there are only a handful of small, underfunded organizations looking out for the world’s paediatric diabetes needs, and Life for a Child is one of them.

Graham Ogle, more than anyone else I’ve ever met since my son was diagnosed four years ago, is my diabetes hero. The world needs more people like him.   

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Type 1 Diabetes, or Dog Allergy?

A few days ago, one of the boys in our neighborhood came over to play with my six-year old son, Sacha, and our black lab, Molly.

Unfortunately, the boy was allergic to dogs, and by the next day, he’d developed an uncomfortable rash around his mouth. He’s even more allergic to cats, so his parents are going to have to give away their long-time pet. It’s breaking their kids’ hearts. 

A few days later, as I was doing a particularly painful insertion of his pump set, Sacha began to cry, saying he hated his diabetes.

Knowing how much Sacha loves our dog Molly, I asked him, “if you had to decide, would you rather have diabetes, or would you rather have an allergy to Molly?”

Sacha didn’t hesitate for a moment: “Diabetes,” he said firmly.

Hmm. Does that help?

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Are Kids with Type 1 Diabetes “Special Needs” Children?

A few days ago, I found myself telling a colleague that I couldn’t attend a conference, as I try not to travel much any more. “I have two young children,” I explained in an email, “and of them is a special needs kid.” 

Wow, did I really write that? I did. Did I mean it? I don’t know. It makes it easier when communicating about my limitations at work. “Special needs” can mean all kinds of things, but everyone realizes that it translates into extra parental responsibilities. That is true for parents of kids with type 1 diabetes, but are our kids “special needs?” 

I’m uncomfortable with saying that about my son. He’s psychologically and physically healthy, well adjusted, easy (for the most part) to get along with. He does have this one whopping physical problem that sucks up so much of our time and energy. But is this “special needs?” And why do I even care?

Part of me hates saying “my son has type 1 diabetes.” Outside of our little world, no one knows what that means. I never knew until my son was diagnosed at the age of two. So it makes life easier to just say “special needs.” But I’d better think about this carefully, before I wind up labelling my boy in a way that is inaccurate, or that will cause him upset later on. 

What do you think?

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Kids, Dietary Compliance, and Type 1 Diabetes: What a Mess

Over the last few days, I’ve begun to understand how fragile my son’s compliance with our eating guidelines really is.

Sacha is six, and was diagnosed at the age of two. Until recently, he’s been young and impressionable enough to (more or less) follow our rules. If we tell him to please not eat something without telling us, he’s largely done that. So much so, that over the past few years, I’ve realized that I don’t need to watch him like a hawk at birthday parties or gatherings with food. Until now, he’s accepted the unpleasant fact that eating and drinking are, for him, acts requiring adult discussion, judgement, carb counting, and insulin dosing.

This last week, however, two incidents made me realize how fragile this consensus really is. Over the weekend, Sacha’s nine year old sister Tessa and I went out for breakfast, and then picked up a sweetened iced tea drink that she’d been longing for. I was happy to buy it for her, as she rarely gets the treats she wants at home.

As we returned to the house, however, I reminded her to be careful not to let Sacha drink from her glass, as we didn’t really know how much sugar was in the concoction.

A few hours later, however, a routine blood sugar check revealed that Sacha was an inexplicable 350; after some discussion, my wife and I learned that Tessa and Sacha had secretly arranged to give Sacha some of the iced tea, and to not tell us. Parental anger and tears ensued. 

Only one day later, however, Tessa grabbed a plate of grapes after dinner, and ran with them into the living room, where she was doing cartwheels with Sacha. What a normal, innocent thing to do; she was thirsty and hungry, and a pile of freshly washed green grapes was just sitting on the kitchen counter. What kid wouldn’t want to grab the plate and go play?

My wife and I sucked in our breath, and exchanged worried glances. Trying hard not to hover, we calmly called to Sacha and asked him to keep track of the number of grapes he was eating while playing. 

Ten minutes later, he returned and announced that he’d eaten a whopping 32 grapes, roughly 30-35 carbs.

We were astonished. Sacha had never done that before; at most, he would take two or three, and then run to tell us. In fact, we weren’t even sure if Sacha could count accurately to 32; smart as he is, he’s only in kindergarten. His sister hadn’t counted for him; she was busy with her round-offs and splits. 

We didn’t know what to do. It was time for bed, and if we dosed him for 35 carbs and he’d in fact eaten only 22 or 12, he’d go dangerously low while sleeping. But if we didn’t dose him properly, we’d continue to have night time highs, something we’d been battling for weeks. 

What to do?

We dosed him for 32 carbs, after exchanging some angry words with the kids about judgement, eating, and diabetes. I glumly went to bed, preparing to arise at 2 am to handle the rest of the night. As usual, my wife took the first shift. 

Over the coming hours, Sacha indeed went low, as we feared. My wife corrected with juice, and by the time I’d taken over, I was battling highs for the rest of the night. We woke early the next morning, grumpy and exhausted.   

But the bigger issue is this: now that Sacha is getting older, the opportunities for eating without carb counting, or reporting to an adult, will multiple exponentially. We’ll have to try and maintain some kind of oversight and control, while also letting go, hoping that we’ve taught Sacha to care enough about his health to not hurt himself. 

But how can you tell a six year old that if he doesn’t accurately count his grape consumption, he might go into seizure or coma? Or that if he messes up regularly enough, he could easily damage his kidneys, eyes, heart, or nerves? We sometimes say these things, and then instantly regret them. Those are not messages that six year olds should have to hear. But we desperately want him to realize how serious this stuff really is. 

Sacha has begun to cry, “I hate diabetes,” and so has his sister. They are both beginning to understand how different their lives are from those of other children. Sacha, rightly, has a mind of his own, and Tessa, rightly, is angry that his disease imposes so many restrictions on her.  Surely, eating a grape without engaging in complex mathematics and technological maneuvers should be part of any kid’s daily routine. 

We didn’t realize how easy we’ve had it until now. As other parents of kids with Type 1 diabetes have warned us, the tough years really begin when the kids are old enough to do their own thing…..

 

 

 

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Pasta, Pizza and Ice Cream: The Trauma of “Kid Friendly” Dinners with Type 1 Diabetes

We’re new to Minneapolis, and eager to meet people. Naturally, families with kids our own children’s age are the most logical place to start. Outside of work, the parents of our kids’ schoolmates are the only community we are connected to, as we don’t attend religious services.

Our school has been incredibly welcoming, but there is one constant problem: the “kid friendly” dinners organized by well meaning parents. Unfortunately, these meals are not aimed at children with Type 1 diabetes; why should they be?

You know the drill. You get invited to someone’s house, the hosts know there will be lots of children, so they choose food that most young folks are likely to enjoy: pizza. pasta, and ice cream. Our school is a Montessori, so the food at parties is usually organic and Whole Food-bought. Still, pasta is pasta. 

Our kids, aged 9 (no diabetes) and 6 (type 1), love pasta and ice cream as much as anyone. But pasta wreaks havoc on our son’s blood sugars, all night, and when you throw in a serving of ice cream – including the fat, protein and high carb count – the damage is even greater.

Dinner is served typically around 6. We do a combo bolus, but nonetheless, our troubles begin around midnight. Sugar levels begin to zoom up, and we start correcting to try and bring them down. Nothing much happens for a while, but by 3 or 4 am, his sugars usually start coming down too hard, and too fast.

Since I’m the night-time BG guy, I spend 1 to 5:30 am waking up, studying his CGM, testing his blood, wondering if the pump isn’t working, and tinkering with basal and boluses. 

At 5:30, if I’m not too exhausted, I go to the gym and get a bit of relief. My wife takes over, dealing with the oscillating BGs until the kids get up at 7:30 for school. 

We’ve tried dealing in different ways. We tinker with basal rates, combo boluses, and the like. It doesn’t help. We’ve called our hosts ahead of time, asking if they can tweak the menu. This gets awkward, however, as it imposes on people we don’t know particularly well, and throws their dinner plans into chaos. We’ve also tried bringing our own food for Sacha, but that just causes a scene; he doesn’t like being singled out.

More often than not, we just let it go, look at each other with resignation, and hope that this time, things will be different. 

Any suggestions? 

 

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The CGM makes life easier, but it’s no cure

Two weeks into Sacha’s use of the Dexcom continuous glucose monitor, and the excitement is over. Yes, the CGM is great. No, it didn’t make his type 1 diabetes go away. I suppose it’s like every new toy that you get, either as an adult, or as a kid. At first, you’re so excited – “this will change our lives!”  - but then, a short while later, reality and familiarity do their bit. Yes, things are a bit better, and a bit different. But, the underlying situation stays the same. 

Here are some initial thoughts on the Dexcom. 

First, reliability: The new Dexcom CGM does often give good trend data. Fantastically helpful. The point BG estimates, however, are often very wrong. Not very encouraging, and makes one suspect, in the heat of the moment, that the trend data are also wrong. And even if the trend is right, there is a huge difference between a 300 and a 200! I suppose with time, we’ll get a sense of how much we can rely on this thing. 

Second, the alarm function: I love it, especially in those down times when I wouldn’t be testing him, but want to know whether he might be going low. The alarm is only as good as the underlying data, however, so see above. If those aren’t correct, the alarm may be unuseful.

Twice now, Sacha has buried the CGM under his coat, or his blankets, when it has alarmed. He can’t really explain why, but in both cases, he risked his life; there was a serious hypo underway. I think he just didn’t want to deal with it, or have anyone else deal with it.  

Third, ease of insertion: Pretty good. Pain is moderate, and the process is pretty simple. And replacing only once a week is a godsend. SO MUCH better than the older Medtronic CGM.  

Finally, keeping it on: Much to our surprise, Sacha has not asked to take the CGM off. It hasn’t yet bothered him sufficiently. Good news!

All in all: we’re happy we have it. But life with Type 1 diabetes continues….This is one tool. A neat tool. But unlike the hype from my last posting, this is not, really, a “game changer.” 

Sigh. 

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This may be a game changer: Using the Dexcom G4 Platinum Continuous Glucose Monitor

We received our new Dexcom G4 Platinum Continuous Glucose Monitor a few days ago. It seems absolutely wonderful. What a difference from the old Metronic one we tried when Sacha was 2! Insertion was easy, calibration is a breeze, and the interface is wonderful. We’re getting so much excellent information, especially about the nights. We’re only three days in, but at this point, I can begin to believe that this may really be a game changer.

Wow.  

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