how i care for type 1 diabetes: ‘i used to be a control freak and i had to give that up'
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the day-to-day of giving mason, right, the freedom to just be a kid is still a constant challenge for his mother miriam, left.
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miriam dos anjos vividly remembers the early friday morning when her baby boy mason woke up crying unconsolably. then he went unconscious.
“he was unresponsive. we got him on the couch, i’m on the phone with 9-1-1, and nothing was waking him up. within probably five minutes, my whole house was filled with emergency responders. we had sergeants because it was a child who was unresponsive and the look on their faces was just horrendous. they’re all in there trying to get him going and revive him. they’re able to wake him up a bit and they do a finger prick. and right away they said, ‘he’s got to go with us now.’ so my husband mike went with mason in the ambulance because we had just woken up. i got dressed and drove after them.”
that was the beginning of one of the toughest days of her life. the er doctor thought her baby was going to be okay and could go home until dos anjos asked if he had checked mason’s blood sugar since the finger prick back at her house had prompted immediate concern. suddenly mason began staring blankly and having seizure-like episodes, dos anjos recalls. “his sugars were so high, they couldn’t get a reading. he kept going in and out of consciousness, and when he would be awake, he would be thrashing. this went on for hours. they wanted to do an mri, but the sedation wasn’t working.”
diagnosed with type 1 diabetes
the aurora, ont. family was rushed to sickkids hospital in toronto for emergency care where he continued screaming and thrashing. mason was usually a “happy little dude” making the day’s events seem unbelievable and adding to the rising panic. they spent 16 hours in a treatment room, hearing the staff members say that he was dka, which was later explained as diabetic ketoacidosis, a life-threatening state of insulin deficiency that means little to no glucose, or fuel, is being delivered to cells and the body’s organs are starting to shut down. he also had fluid and swelling on his brain which subsided but led to regular follow-ups with a paediatric neurologist for the next two years.
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that was dos anjos’ introduction to her son’s diagnosis at age 16 months of type 1 diabetes, a chronic disease where the pancreas can’t make the insulin needed to get sugar, or blood glucose, to cells to produce energy. kids, teens and adults of any age can be diagnosed with type 1 diabetes. this is an autoimmune disease where the immune system mistakenly attacks the pancreas. while family history can be a risk factor, the cause isn’t yet understood.
patients face the lifelong requirement of managing the right amount of insulin by injection or insulin pump to keep their blood sugar in a healthy range.
diabetes canada estimates there are 5.7 million canadians with diabetes, and about 10 per cent of them are living with type 1 diabetes that comes with higher risks of complications, including heart disease and stroke, vision loss, kidney damage and depression. the threat of hypoglycemia (low blood sugar) and hyperglycemia (high blood sugar) can affect mood and behaviour, and lead to hospitalization. brain scan analysis of young children with type 1 diabetes have shown the chronic swings in blood glucose levels change their brain structure and cause mild performance impairment, stanford university school of medicine scientists have revealed. glucose is important for brain development, so kids with type 1 diabetes can have learning delays and behaviourial issues.
also, adherence to treatment can be undermined by costs of drugs and devices not covered by insurance. there’s a lot to take on for family caregivers, especially those with vulnerable toddlers. the canadian paediatric society says that children under five are the fastest group of newly diagnosed cases for type 1 diabetes, and about 30,000 school-aged children in canada are now living with the disease.
learning to manage type 1 diabetes
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for dos anjos, the diagnosis meant a crash course in learning about how to treat type 1 diabetes and always be on high alert to keep her son’s blood sugar from going too high or too low. it’s not just about checking blood sugar and administering insulin, but planning meals, monitoring food intake and physical activity, noticing his moods and behaviour. the family was referred to the paediatric endocrine clinic in nearby markham for support and services.
“they got our family at our worst,” dos anjos says of the first clinic visit. “we were all traumatized from the whole thing. we’ve got this 16-month-old boy, and now we’ve got to do needles, we’ve got to do finger pokes with a little lancet [to put a drop of blood on a glucose analysis device]. essentially, it was like bringing home a newborn to a family that had never had a newborn. you’re starting from scratch and learning how to keep this little human alive and safe. he can’t tell you how he feels and he doesn’t know how he feels. it was the most isolating, lonely, terrifying time in our lives, to be honest.”
what followed was a strict regimen of carb-counting and detailed attention to food labels, and chasing mason around to make sure whatever he ingested would be covered by the appropriate dose of insulin. after a month of needles for multiple daily injections, he went on the insulin pump and then a continuous glucose monitoring device when he was 19 months, giving dos anjos the management assistance she needed.
“so we had this little robotic guy, with this little pump pouch and this little teeny insulin pump on his back. and he had a continuous glucose monitor sensor that was attached on his tummy or his upper buttock where it would measure his interstitial body fluid every five minutes and give a reading to a cell phone or a device, so i did not have to finger poke. we had to carry around his device with us at all times, because that’s how his continuous glucose monitor would upload, so we could see his sugars in real-time. these two devices were game changers for us.”
the dos anjos family (left to right) – mason, miriam, makayla and mike.
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living with and advocating for type 1 diabetes
now mason is an active 10-year-old boy with a little sister makayla and a powerhouse mom who advocates for his treatment and supports other families with kids with type 1 diabetes. she runs a dedicated facebook group, has a job as a senior development officer with jdrf canada, the juvenile diabetes research foundation, and keeps extra type 1 diabetes supplies at home to give to people who she knows might need them. she takes her son to the markham clinic every three months for check-in appointments with members of his care team, including a dietitian, a certified diabetes educator, a family support worker and the endocrinologist.
“the type 1 community is a very strong, fierce family – that’s the best way to put it. they will drop whatever they have, whatever they’re doing to be supportive. the online presence is huge,” she says, grateful for the connections she’s made over the years. “and my door is always open.”
up until two years ago when they were able to qualify for funding support, the family paid thousands of dollars out-of-pocket for mason’s continuous glucose monitoring system, which meant scrutinizing finances and buying 15-year-old vehicles. “in all honesty, there needs to be more access for families that don’t have the means to afford the devices.”
the day-to-day of giving mason the freedom to just be a kid is still a constant challenge. he has a full-day nurse who stays with him at school in the classroom, making sure he’s okay and adjusting his insulin pump dosing if needed because his diabetes is so complex.
when his blood sugar is high, he can get really excited, irritable and argumentative, and when it dips down, he often ends up in tears and quiet frustration.
“type 1 diabetes is incredibly unpredictable. it has no rhyme or reason. how his blood glucose reacts with the exact same activity, no two days are the same. no two moments are the same. so it’s constant and it’s relentless. you don’t have the option to say, ‘i’m tired today, i don’t want to deal with this.’”
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dos anjos explains that when someone is diagnosed with type 1 diabetes and lives with the disease for about two years, typically they can feel their blood sugar becoming high or low. however, mason doesn’t feel these changes. she says it’s likely the result of being diagnosed so young where his brain didn’t become sensitized to blood sugar levels. the problem is, he could experience a low blood sugar and have a seizure or go into a diabetic coma.
“so he’ll be running around with his continuous glucose monitor that is attached to his stomach, that measures his blood glucose levels, and i get alerts on my phone and on my watch. he wears a watch that vibrates to let him know something’s wrong. and we have ipads that start chiming and singing, because you have 15 minutes to deal with a severe low before it can become potentially life-threatening.”
during the night, those ipads are on either side of the parents’ bed in case mason has a low or high episode when he’s sleeping. a close friend of dos anjos who lives nearby has the device app on her phone so she can follow his blood glucose levels as a backup. like anybody, dos anjos gets tired. she worries she or her husband might miss that alarm. her friend also has a key to the house in case of emergency.
“she has messaged me once or twice in the night going, ‘miriam, seriously, check mason, are you okay?’ if she couldn’t reach me and she can see that things are off the rails and i’m not responding, she would come over.”
advice to other caregivers of type 1 diabetes
as a caregiver, dos anjos says the toughest part is not having a day off or a break. her parents are elderly and don’t live close, and there are no other relatives who can help out. she relies on her good friend and the people she’s met in the type 1 diabetes community for emotional support.
her advice to other caregivers is something she keeps telling herself:
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“give yourself some grace. we are so hard on ourselves as caregivers. we think, ‘i’m failing if i make a mistake.’ well, mistakes happen, life happens. just brush yourself off. i used to be a control freak and i had to give that up because you can’t control this. you have to take each day as it comes and reach out to find someone that you can talk to who relates to what you’re dealing with. that’s a huge component.”
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