A recently published paper by the CHI research team and the Collaborative Research Network (CRN) members, “Real-world experience with the use of diazoxide among people living with congenital hyperinsulinism and their caregivers,” explored some significant topics related to diazoxide use to treat congenital hyperinsulinism (HI). The paper utilized data from the HI Global Registry and interviews with caregivers and individuals living with HI to generate key themes and insights on using diazoxide. However, some topics that were shared during the interviews warranted additional exploration beyond the paper. One of those topics is sleep, which is top of mind for most parents but is much more fraught with HI!
If somebody just offered me time to sleep, that is all I want. For Mother’s Day, I told my husband I just want to sleep. Just let me sleep. It takes a toll on your mind, your brain becomes tired. You don’t want to do anything else. -Parent of a 5-year-old with HI
Nighttime Hypoglycemia and Preventing Lows
Sleep can be elusive for many reasons as families work tirelessly to prevent overnight lows. This leads to being awoken to test blood sugars, by alerts from continuous glucose monitors (CGMs) or beeping from feeding pumps necessitating additional feeds. Additionally, there is a pervasive sense of anxiety related to the constant vigilance associated with HI management.
I’m going to say we’re probably up eight to 10 times a night on a good night. They might be little ones, it might be just getting up and you know, repositioning her and then putting the pump back on. -Parent of a 2-year-old with HI
In a newly launched question in HIGR, 30% of 40 respondents reported that, on average, they were waking up three or more times per night for HI-related reasons, with 10% of individuals reporting that they were waking up 6 times or more.
Of 40 people from HIGR who reported on sleep quality, it was described as poor or very poor by 13% of caregivers and poor or very poor by 10% of people with HI.
On a good night, it could be four hours, between the feeds. But on a bad night, it feels like it’s every half hour…I would say the longest stretch either of us gets is four hours in a row. -Parent of a 2-year-old with HI
I don’t know what eight hours of sleep looks like. If I get five hours, that’s my eight hours. -Parent of a 5-year-old with HI
Overnight Feeding
Feeding throughout the night was a common theme. In the interviews, parents discussed how continuous or episodic feeding resulted in disruptions to sleep, whether to set up feeding pumps or perform a bolus or oral feed.
If she had a low, and I was trying to shove something in her mouth when she needed it, that was rough because she would say, “I’m trying to sleep.” You need to eat. -Parent of a 10-year-old with HI
HIGR survey participants currently taking diazoxide (n=109) were asked about the length of time a person with HI could go without eating before their blood glucose level dropped below 70 mg/dL (3.9 mmol/L). One in six (17%) of people could only go 0-4 hours without eating, and 36% of people with HI could not go more than 8 hours overnight.
The feed only has a hang time of four hours, so every four hours for the feed. Then the G-tube, if she rolls over, it will beep if there’s no flow. That will probably be two or three times a night, we’ll have to get up and roll her over. -Parent of a 2-year-old with HI
Constant feeding also presents other challenges, including the need to help children with trips to the bathroom or increased frequency of diaper changes.
She is still taking fluid all night, I think that causes her to need to have a diaper changed more often. I’m sure at the same time, I wasn’t changing my big kid’s diaper in the middle of the night. -Caregiver of a 2-year-old with HI
Anxiety and Other Nighttime Disruptions
Gastrointestinal distress also impacted nighttime disruptions. Nighttime vomiting was mentioned as a challenge in two of the interviews, including one person who mentioned that their child vomited multiple times every night for years.
I had to wake him up every hour, so I got no sleep. I was just waking him every hour to feed him and to pump him sugar. When he vomits, I would still have to try to give him food even while he sleeps because the sugar is just not stabilizing. -Parent of a 5-year-old with HI
Even if there were no management needs for the night, parents often were faced with anxiety, especially if their child was sick or had not eaten enough.
If he doesn’t eat great for the day, I will feel a lot of anxiety that night when he’s sleeping. Sometimes my husband and I will trade off and just go poke his finger in the middle of the night to make sure that he’s fine. -Parent of a 1-year-old with HI
Two parents specifically mentioned that they did not move their child into their own bedroom because of their ongoing fears and the ease of having their child nearby to manage nighttime needs. Within HIGR, 36% of 33 families who use CGM reported that remote monitoring allowed the person with HI to sleep in their own bedroom. CGMs provided comfort for many, but alarms still require action, which may or may not indicate a true low.
Many studies have shown the importance of sleep for overall health, but in HI, many families face an additional burden on their ability to attain adequate rest. Lack of sleep remains one of the most difficult features of parenting a child with HI. If you are a parent of a child with HI, we would like to hear from you. You can share how HI impacts your sleep in the HI Global Registry.
