Does the possibility of nighttime hypoglycemia in your child keep you awake at night?
Nighttime hypoglycemia. This is truly one of the biggest fears among parents of children with Type 1 Diabetes.
A few months ago I was invited to speak at a pediatric endocrinology medical education to a roomful of physicians.
I am always incredibly honored to do this because it gives me an opportunity to participate as a patient advocate and remind those in the medical field about just some of challenges those in their care are dealing with.
As part of the curriculum, there was a section with case studies about people facing various challenges with their diabetes.
Like all the other cases, the proper treatment and recommendations were discussed by groups at the tables in the audience. Then a panel of experts that included some leading physicians and a psychologist presented the “proper” way to go about dealing with these challenges.
The fear of nighttime hypoglycemia
One of the examples was about a mom who feared hypoglycemia at night for her child with Type 1 Diabetes. To try to guard against it, she would send her child to bed with higher blood sugar, or have her child eat a snack before bedtime without administering insulin in order to avoid a low blood sugar at night.
Hypoglycemia is always scary.
However, if anyone with Type 1 Diabetes goes low in the night, and they are still getting insulin – whether that is from an insulin pump, or due to active insulin that was injected into their bodies – the consequences can be severe.
And we do read about cases like this on a regular basis.
Yes, sometimes there are other factors at play that result in the death of a person with Type 1 Diabetes. But as parents we are all too aware of children who have suddenly died in their sleep because of this condition.
Challenging the notion that a parent’s fear is a curable “disorder”
So when it came time for the psychologist to give her expertise about how to “treat” the mother for her anxiety, I was of course anticipating her response. She was an excellent psychologist. All her answers for all the cases were truly spot on, academically correct and in alignment with everything I have ever read, researched and understand about managing diabetes.
However, the one thing that as a mom I struggled with was the approach that the mother’s anxiety was a disorder and it would be cured or drastically minimized.
There was the suggestion that the mom in the case study needed to be professionally treated style=”font-weight: 400;”> for this behavior.
While I remained quiet for all the previous case discussions, this one I certainly raised my hand on to speak up. And as the moderator just happened to be my son’s previous physician, I think she knew what was to come.
Your fear of hypoglycemia at night is normal
I introduced myself as someone who has not yet been diagnosed with a psychology disorder, although because of my passion, opinions and sometimes high emotions as the result of this condition, some may disagree.
I told the panel that in pretty much every parent group I am in, locally and internationally, that I would estimate at least 80–90% of all the parents of children with Type 1 Diabetes wake up every night at least once, sometimes more, in the early morning hours to check that their children’s blood sugars are in a safe range.
While I only do it if medically needed based on his blood sugar number at bedtime, many parents do give their children snacks before bedtime.
I admitted that even though my son now wears a CGM (Continuous Glucose Monitor) that “speaks” to his pump so it will stop pumping insulin into his body as he approaches a low blood sugar, I still check on him every night for fear of hypoglycemia.
Advocating for parents of children with Type 1 Diabetes
The psychologist did not think it was necessary and asked me, “But why are you checking on him? What are you afraid of?”
In that room full of perhaps 75 or so physician and diabetologists from the region I openly admitted, “I am afraid that he will die.”
This had to be said because:
1 – It is the absolute truth.
2 – I must advocate for my fellow parents of children with diabetes so that the medical community can understand this is a true worry – call it anxiety if you will – that will not go away.
Nighttime hypoglycemia is a real threat to people with diabetes
There was some discussion among the attendees about the fear of nighttime hypoglycemia after that.
Some physicians supported my statement as they have several people in their care who do the same. Another psychologist presented a study earlier that day about the fear of hypoglycemia, so she could scientifically empathize with me.
And while that was lovely, it wasn’t really validation I was seeking.
That entire room could have disagreed with me, and it would not convince me to change this critical part of my nighttime routine since Type 1 Diabetes entered our lives.
Fearing for your child with a chronic illness is not a disorder, it is parenting
I do not think that there is a parent on this earth who does not worry about their child – diabetes or not.
When you have a child with a chronic illness, you know the risks are increased and the chance of losing them too soon is a reality. Therefore, we fight so very hard to make sure that does not happen.
It may clinically be called anxiety, but I call it caretaking, or parenting.
There was no time left in the session to debate this or add additional reasons for my why. I never had the chance to tell the psychologist that you cannot take the parent out of the caretaker.
No matter how much you try to treat that anxiety, you will not convince us to live a carefree life until there is a cure for this condition – a proper cure that does not rely on technology or insulin to monitor and regulate blood sugar.
And even then, we will most likely still be waking up at night to make sure that our children are still breathing.
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Hi Pam, thanks for sharing your fears and your thoughts on hypoglycemia. I agree that the fear is coming from the fact that you are parenting, and it is nature that you worry about your son’s wellbeing. You are a great mother. Take care of your son and meanwhile take care of yourself too so you will be always there for him.
Thank you Erin!! And you are right – moms of children with any disease need to make sure they are taking care of themselves! My dream holiday is to just go somewhere for a couple of days and sleep through the night.. However, I know I would probably wake up in the middle of the night to call home!!
This is still my biggest fear. You can call it anxiety if you like, but I check on my daughter to make sure she is still breathing every…single…night! And I agree, I know a ton of Type 1 parents who do the same.
Because Type 1 is seen largely as a manageable condition, many are not aware of this REAL situation. Keep talking about it Pam, and from this Type 1 mum…
…THANK YOU! <3
Thank you Lorraine! It is such a real fear because the risk, although perhaps small is there. And be sure I will never stop talking about this! When I present to physicians and healthcare providers I always show an image from a fit bit program that tracked my sleep one night. It was a night that required a few checks, but this visual really helps tell the story of how little we sleep!! It really puts it into perspective. And I will keep sharing those examples until there is a proper cure and we will no longer live with this worry.
Good for you, Pam! You brought a painful reality that exists beyond the medical training of even the most skilled medical professionals. It’s a lesson we all can learn in many areas of life. Thank you for sharing your fear and your struggle with us. You are a light to many!
Thank you April!