My 3-year-old son was diagnosed one month ago, and it has been an emotional roller-coaster. He is currently in a strong honeymoon and not on any insulin at all, and we have been advised to treat lows at 55 or 50. We have had to treat lows 2-3 times a night every night for the past 3 weeks, and he is fed up with it and has been refusing juice and food. We have had to wake him and resort to force-feeding him honey or GU gel while we restrain him, and he screams and cries, telling us not to do it. The force-feeding is so bad that he ends up conceding to drink juice and eat a cookie afterwards. Last night, about 15 minutes after he went back to sleep, he had a nightmare and cried out, “I don’t want the gel! Don’t do that!” This is surely traumatic for him and is also triggering my own past trauma. The endo has suggested “rubbing GU gel on his gums” without waking him, and that does not work. We have started seeing a psychologist who is part of our son’s care team and we will discuss this at our next appointment. Any advice on how to manage all this and minimize the trauma while giving the physical care he needs to avoid hypos?
hi @Lynnie welcome to Type One Nation. If your son is not taking any insulin, the chances of a severe low is, I imagine, quite small. Please check in with your pediatrician/Endo on a plan for “treating lows” while not taking any insulin. My notion is that the finger stick (or even CGM) you are using may not be designed/ may not be optimal for his current situation. There might also be a candy you guys agree on, Smarties, or skittles, cake icing in a tube, tootsie roll, may be more palatable.
There is also Baqsimi, a form of glucagon. He does not need to be awake. I urge you to talk it over with his doctors. Good luck.
Hi @Lynnie and welcome to the forum.
Oh goodness. Lows can trigger a “fight or flight” response, similar to a swimmer who becomes combative when a lifeguard is attempting to rescue them.
I don’t know what the guidelines are for children, but 50/55 is pretty low and I want to treat well before I get there. Do you have instructions on what to give as a snack before bed to prevent lows from happening in the first place? Someone recommended yogurt to me as a bedtime snack that has “staying power” and I find it did the trick, but your dietitian/educator might have other recommendations for foods that will help him stay steady during the night. Hopefully some of your son’s favorites are included.
Please keep us posted!
Since you are new to diabetes I highly recommend you check out the book Think Like a Pancreas by Gary Scheiner. He has Type1 diabetes and works in the field so has a unique personal perspective that is particularly helpful. I don’t know that it will be able to help with your specific issue but you might find it a worthwhile addition to what you are learning from your endo.
Also, many endos work with Type2 patients but have very little understanding of Type1. If yours does not treat Type1 - ideally in children - finding one who does can make all the difference.
UPDATE:
Thank you for your replies. It turns out he wasn’t so low all that time—he was high! The sensor had malfunctioned during the last few days of use. On day 10, we swapped in a new sensor and it said he was “High” and rising. We thought it was inaccurate because the last reading was in the 90s. A finger stick showed he was over 450! We had been plying him with carbs for days when he was high all that time. Now my spouse wants to do a daily finger stick to confirm the Dexcom number, and I think that’s overkill. Still, the malfunction and the seemingly universal server outage last night does not instill confidence in this technology!
I also had a talk with my kid and learned that he is ok with the nighttime snack as long as we turn on the lights all the way. He doesn’t like not being able to see the food. This is a great reminder to always communicate with him, something I generally keep in mind, but it’s hard when I’m the only person on the care team who prioritizes this (he’s 3).
I ordered a copy of Think Like a Pancreas within the first 2 weeks of diagnosis and just haven’t had time to read it, but I will as soon as things settle down a bit. Thank you for the reminder about the book.
Thank you for the update. I’m sorry to hear about the huge inaccuracy with the Dexcom! I’ve come to trust mine but will do a fingerstick if the way I feel (something I’ve learned over time) doesn’t match my reading. I find it is rarely far off but I can’t blame your husband for wanting to do a daily stick, at least for the time being.
Did you contact Dexcom to issue a replacement? They do that if a sensor fails.
Lynnie @Lynnie, in a way, it may be a big part of your diabetes management journey to know that technology is not always right and that dependence too much on some of these really awesome tools can cause harm. As a side note, I’m about as fully automated as possible, but I do keep my eyes open and know to check just in case; I also lived with diabetes for 30 years before there were digital glucose meters.
As far as doing a fingerstick every day, that may not be necessary, but is wise to do a comparison between the meter and CGM about a day after beginning a new CGM; generally the CGM reading is more accurate than any meter reading. Three years old and being a “newbie” your son knowing or being able to guess his body glucose level may not be possible, but as you observe him, his behavior, you may be able to tell - if there is any question, do a fingerstick to give you guidance.
A “universal server outage” should not affect management or treatment in any way. CGM and fingerstick glucose readings are within 30 feet of your son - they don’t need to travel through clouds.
Hi Lynnie, In case you’re unfamiliar with the term “compression low”-here’s a link. It’s very possible this was causing the “fake” lows on your son’s CGM:
In all my years using a CGM I consistently get false low readings in the first 12 hours- with every CGM I’ve tried, including the Dexcom G7. You can calibrate the G7 BUT I was told by Dexcom customer service not to calibrate in the first 12 hours because the sensor is “warming up”.
I’ve been happiest with the Libre 3 as far as accuracy- but each patient (or parent) will need to find the CGM that works best for them. CGMs are great-but not perfect. When in doubt, always do fingerstick blood test.
You’re doing great- T1D is a tough road but will get easier as your knowledge grows, and your son gets older. My prayers are with you !
- Joanne, T1d for 51 years