Skip to content

Posts tagged ‘diagnosis’

It’s Not. Your. Fault.

 

 

 

About a year ago, Luke’s behavior turned dark. This went beyond the terrible threes: he was alternately clingy, defiant, manipulative, and fiercely angry.  He missed hours of preschool due to tantrums. When he quietly told Erik that he didn’t like living because of diabetes, our suspicions were confirmed – at three, he was coming to terms with time, mortality, and “forever.”

We tried to put it in perspective, sometimes with hilarious insights from Luke. “Some kids don’t have both parents,” I said after reading Hansel and Gretel one night. “It’s tough – some don’t have parents at all.”

Luke didn’t skip a beat. “Well, I need more parents,” he said. “I’ll go to a bar.” When Erik and I have a date, the standard reason Luke can’t come is that we’re going to a bar, and kids aren’t allowed. Apparently the lesson is that bars are a great place to find quality parental material.

But nothing really softened his storms, and I had the feeling we were missing something aside from the obvious. When Luke was diagnosed, people often said, “Well, at least he’ll grow up with diabetes and won’t know anything different.” It was an understandable reach for silver lining, but I’d never really bought it.

One night, the pieces fell into place. It was bedtime, and I was lying with Luke in his darkened room. He was rocking his body from side to side and staring blankly at the ceiling. I felt a chill. “What’s up, bud? Why can’t you sleep?”

“I’m thinking about the bad things I do to my body,” he whispered.

My skin crawled. Blood sugar had been a roller coaster that day – one of those nasty 40 to 400 and back again kind of days. Of course – kids blame themselves for divorce, abuse, neglect, and all kinds of things beyond their control, so why wouldn’t he blame himself for crazy blood sugars? He saw us as able to bring blood sugar under control, while he could do nothing. No wonder he was disgusted with himself and mad at the world.

“It’s not. Your. Fault.” I told him. “Having diabetes and high or low blood sugars – none of that’s your fault. There’s nothing you did to cause that.”

He brightened. “Then whose fault is it?”

“Well, sometimes it’s my fault for not getting the insulin right, and sometimes it’s nobody’s fault – diabetes is just tough to get right sometimes. But it’s not your fault – your job is just to be a kid and to have fun, learn things, and be nice to people. It’s our job to take care of the diabetes. And when you’re big, it’ll be your job, but it’ll be a lot easier then.” I babbled, hoping something would stick.

It did. He smiled in a way I hadn’t seen in months. “I love you, Mom,” he said as he hugged me. He rolled over and in minutes was snoring softly.

He didn’t turn into an angel, but the nastiness faded, and we went back to more typical terrible-threes behavior. We still occasionally remind him that it’s not his fault, and the answer now is an assured, “I know.” There will be more phases as he grows up, and I hope we can help him navigate them. If not, we’ll just send him to a bar to find some parents who can.

Advertisements

Tidbits from JDRF’s Seattle – Sweden Diabetes Conference

This weekend, instead of enjoying the very last day of sun in Seattle, Erik and I went to JDRF NW’s 6th annual Seattle-Sweden Diabetes Awareness Day – and were so glad we did. The event brings top researchers from the US and Sweden together to give updates on their work, much of it immediately applicable to daily life with T1D. JDRF recorded all talks and will post them online, but these pieces of information were highlights for me (most of the talks focused on kids, so apologies to adult PWDs):

Hope!

  • 2-3 years after diagnosis, most kids are still producing insulin and c-peptides
  • Overall A1Cs have been steadily dropping over the years
  • Daily exercise lowers A1Cs on average by 1 point
  • Based on genetic and antibody testing, we can now predict development of T1D with 60% accuracy  (another study had 85%), and onset can be delayed by up to 4 years.  This would hugely cut down on the # of kids who are in full DKA by the time they’re diagnosed (50% of kids under 2).
    See TrialNet on how to get screened.
  •  Only half of T1 risk is genetic (at dx, only about 90% have it in their family) – the rest is environmental, which means there’s hope for prevention. One possible trigger may be illness without fever, whic increases the risk of developing antibodies by 3X! Fever actually reduced the risk. When a parent in the audience brought up that using Tylenol with vaccinations seemed to dampen the immune response and asked whether researchers would recommend not giving Tylenol for fevers, the circumspect answer was essentially “Yes.”
  • There are many brilliant, humble, passionate researchers around the globe working and collaborating on detection, prevention, management, and a cure. Obvious, true, but it makes an impression to see so many in one place on one day.

Dealing with Lows (esp. after exercise)

  • Night time really is different: even children without T1D have a blunted response to (mild) hypos during sleep.
  • One hypo puts you at risk for another, because the liver’s glucose supply has already been tapped.
  • The night after exercise, hypos usually occur betwee 12-2am.
    Suggestion (for pumps): use  -20% basal from 9pm – 3am, and suspend or drastically lower basal during exercise. And (as MDI users know), eat protein before bed – it turns to sugar overnight and helps buoy BGs.

Most interesting

I love how much data the Swedes have about T1 (the CDC has just started tracking it)! All kinds of interesting points came up:

  • A1Cs by city vary widely, which shows that higher A1Cs aren’t just the individual’s fault. Heatlth care policies have huge impact (shocker).
  • Most children are diagnosed during fall and winter. They didn’t suggest a reason, but there’s annecdotal evidence that abrupt temperature changes from warm to cold may trigger T1. There’s a theory that diabetes in humans may have developed during the Ice Age as an adaptation to extreme cold, with higher blood sugar preventing frostbite.
  • There are gender differences that need to be understood:
    Girls have a higher a1c than boys right from the start, but the difference disappears (oddly enough) by the time boys and girls are 15 years old.
    Men are more likely to develop complications.

What’s unique about WA state

  • WA and CO have the highest rates of T1 in the country (a vote for sunnier climes)
  • WA state is hardest place in the country to get CGMs and even pump supplies . For whatever reason, insurance companies push back harder here, and there are many hurdles to jump through. (This year’s HTA fight was just one example.)

Something to keep an eye out for:

  • Dr. Hirsch gave a very unsettling talk about “biosimilars” (generics): In the next few years, patents for most insulins now in use will expire. Insurance companies will be pushing for people to use biosimilars, but the FDA rules around production are so vague that it’s not clear in what ways biosimilars will be allowed to vary. “Would you give a biosimilar to your 3 year old or 80 year old grandmother?” Dr. Hirsch asked. “I wouldn’t.”

The latest on the Artificial Pancreas (Aaron Kowalski):

  • The Medtronic Veo (which shuts off insulin delivery when blood sugar is low) is available in every single country that sells pumps except the US! 50k Veo pumps have been sold outside the US, with no incidents of DKA (as the FDA fears) and many of hypos averted by shutoffs.
  • The next step in the artificial pancreas would be predictive algorithms, which research has shown prevent 75% of hypos. With A1C of 6.5, for example, you’re spending 1.5 hrs of day low – reducing that by 75% would mean just 20 minutes a day.

It Takes a Village

  • An international NovoNordisk Dawn study found that family & social support are the key factor in living well with T1D (having lower A1Cs, less depression, etc.). This runs counter to the traditional view that puts the onus of responsibility on the patient, and it makes sense that the burden is more easily carried and better dealt with when shared.

There were a few laughs…

  • There was a dark laugh at mention of the WA state HTA’s assessment that the impact of blood sugar testing was controversial, and that frequent testing lead to depression and hurt the fingers. I learned more about the back story: the state’s committee had actually done a comprehensive data review, but because the reviewers had no diabetes expertise and were looking primarily for cost savings, they didn’t draw the right conclusions. Fortunately, experts (and parents, PWDs, and the JDRF) had a chance to submit research and testimony that turned around the decision.
  • If you’ve ever heard Aaron Kowalski talk, you know about his obsession with diet soda. Throwing his arms wide at the conference (held at Microsoft) and gesturing to the fridges stocked with free diet soda, he grinned, “I love this place!”

A message to friends and family about our son’s type 1 diabetes:

A few months ago, our son Luke was diagnosed with type 1 diabetes, and we’ve struggled to express what that means without overtly complaining. Result is, we haven’t said much. 🙂 So here’s a stab at explaining how our lives have changed and why we’re often glassy-eyed or distracted these days:

What type 1 diabetes is and isn’t:
It’s an autoimmune condition where your body attacks its own pancreas and kills the insulin-producing islet cells. Result: your body cannot produce insulin, and you need insulin injections (via shot or pump) every few hours for the rest of your life.
It cannot be cured, outgrown, or can it be managed via diet or exercise – that’s the more common “type 2” variety of diabetes, where the body still produces insulin but has become largely resistant to it.

Type 1 can be fatal inside a few hours if blood sugar drops drastically, or fatal inside a day or two if blood sugar goes too high – you’re always “one cupcake away from a coma,” as one commentator said.

Imagine your only option for heating your house during deep winter is a combination of kerosene, matches, and a fire extinguisher, with no stove, hearth, or place to contain the fire. You tend a fire in the middle of the floor and try to keep it from burning down the house or going out entirely. Inbetween all of this, you try to get on with your life. This constant balancing act is essential to managing type 1 diabetes: the trick is to balance insulin and food without freezing (going unconscious) or burning the house down (going into a sugar-fueled coma).

Luke’s on an insulin pump and is doing well, but since toddlers’ bodies are constantly growing and changing, his blood sugar likewise swings up and down, keeping us on watch. We prick his fingers every few hours to test blood sugar, weigh everything he eats and calculate the carbs, tell the pump how much insulin to administer, and check him at 3am most nights – sometimes more frequently. Innumerable things can send blood sugar soaring or plummeting, aside from food and insulin: happiness, sadness, anger, a good game of chase, a cold, the location of his insulin pump insertion, or any new sitation. In the life of a toddler, that covers a lot. 🙂

It has been hard. We’ve been grateful for encouragement from other parents and adults with type 1 and for support from family and friends. Some days we manage to be thankful that Luke’s alive and his condition is knowable and managable, and some days we run on exhaustion, fear, or grief. We’re discovering far too many people know someone with type 1, supposedly a rare condition but mysteriously on the rise (no cause has been pinned down). If this is your first encounter (I knew nothing before Luke was diagnosed), this gives you an idea of what it’s all about. It will get easier as we learn more, he gets older, and technology improves – for now, we’re just hanging in there.

Lukas

 

 

Lukas just before diagnosis – still enough energy to be a monkey.