Learning about GLUT3 enzyme made my mind rest easier. I know Glut3 isn’t a free card to get and stay in the low territory, but just knowing what Glut3 enzyme was and what it’s purpose was and how it helps the brain (the most important organ we are concerned with in our children where lows are concerned) has really made me rest easier when treating lows.
Is this some kind of unthinking fear, like fear of the dark, or does it reflect a scenario in which you’re not sure you can recover in time? If the latter, maybe someone here can suggest a way to make that scenario safe.
The term “rage bolus” comes to mind. There’s definitely a nuisance factor with a stubborn high, but no actual danger if it’s treated with reasonable dispatch.
I can only speak for myself in what my worries were, but it all boiled down to a single fear - death of my child.
I just wanted to encourage you. You are doing a great job taking care of your son. Diabetes is a moving target and even the veteran experts ( who I am NOT) have days or weeks like you have discribed. My youngest brother was 3 when he was diagnosed and is now 53. Mom and Dad did not have all the tools or information that we have today. I remember mom spooning Kari syrup down his throat with swigs of orange juice followed by a bowl of cereal. His bg probably went skyhigh but that was what the doc said to do. He is my support as I was diagnosed at age 57 as type 1. Go figure. Don’t beat yourself up. You are doing great.
And how did you solve this? Acclimatization? Carrying glucagon? Something else?
No. Before he got on the CGM I solved it by never sleeping and doing constant finger sticks as he slept because i couldn’t sleep seeing him asleep and not being sure if it was just asleep or something bad. Once he got on the CGM I solved it by being able to see the BGs and being able to watch and correct them. The biggest thing for me was just in realizing that low doesn’t equal death or brain damage. But a parents fear for their child never goes away. I worry for his adult self more these days knowing how cruel the healthcare system is in the US.
Are you looking to get a pump for your kiddo? That would arm you with the ability to micro-dose (0.1 unit increments) meals and more importantly reduce basal insulin for high activity times. Might be something to think about. Another thought, when we have a few days in a row of wacky reactions and roller coasters, we perform a basal test. There were times when my son’s basal needs would change with the seasons. Don’t know why, but whenever we got his basal dialed in, everything else becomes easier.
Are you looking to get a pump for your kiddo? That would arm you with the ability to micro-dose (0.1 unit increments) meals and more importantly reduce basal insulin for high activity times. Might be something to think about.
Absolutely. I am in the long drawn out processes with our health care to get him on a pump. I go to the initial training/intro to all the pumps in early June, and will proceed from there. The reasons you mention are exactly why I am eager to get him on a pump, and am irritated at the long waits I’ve been put throught despite my persistance (they made us wait 4 months for dexcom, and it would have been much longer had I not been a thorn in their side).
So yes, the goal is to get on a pump. Hopefully by the end of summer, but again who knows how long this process will take.
Don’t know why, but whenever we got his basal dialed in, everything else becomes easier.
For the past mpnth I had him on 8 u Lantus in the evenings and it was really working quite well. I increased it from 7.5 when we were having some trouble. With the recent lows, I went back to 7.5 u for the past several days, but we’re back to struggling a bit with higher than needed numbers in the morning, and those increases at night. I think I may go back to 8 u tonight, and chalk the recent events to honeymooning and a bump in the road. But I agree, it seems that when basal is right, everything else falls into place a bit better.
With summer coming I am worried about keeping up with his changing needs on MDI. His endo totally dismissed splitting is basal dose and says its never done on such low doses of basal insulin.
s this some kind of unthinking fear, like fear of the dark, or does it reflect a scenario in which you’re not sure you can recover in time?
I think its fear of scenarios. I worry I’ll sleep through a dexcom alarm, or my phone won’t really be charging and die in the night and I won’t know an alarm had been going off or my sound is off or some random thing. And a fear of not giving enough glucose to recover from a low, as I worried the other night when he kept dropping. I just didn’t know how much he’d need, and it seemed to me like he should have already had plenty! I guess just an overall fear that I’ll make the wrong judgement and cause a serious event.
100% this. I very much worry about him as a young man. I worry about the costs and hassels that will be piled on him on top of the usual stresses of starting out on your own. I worry about him being by himself, or just getting burned out and just not caring about his diabetes (and who can blame him, really). So yes, I have a lot of worry about his future. I try to bury that for now.
I’ll get there I suppose. I tend to over stress during the lows, especially when it doesn’t want to stay up. I’ll quickly think “is it time to just go to the hospital??” But as I’ve read through many threads on here, it seems like some lows can just be like that, and as you said, doesn’t equal a catastrophic event.
I felt bad for him the one night because we just had to keep giving him glucose and at one point he complained his belly hurt. Well, mine would too if I’m forced juice and crackers and such all night! THere’s gotta be a better way to treat lows like that where a) you wouldn’t have to keep waking up a sleeping child and b) when they need a lot of sugar you don’t risk that belly ach reaction from having to take so much in. The constant waking was a stuggle. The more tired he was the harder it was for him to drink. I hate times like that. At least lows during the day he’s usually activie and thirsty anyway!
I so appreciate this, which is why I like this site. No one knows what this is like unless you are in these shoes. It gets very isolating. My sister in law’s mom was a type 1 diabetic, diagnosed probably somewhere around the 1960s. The stories of how her diabetes was managed are crazy! One trip to the dr a week and only corrected if high with ketones. Obviously the control was not good.
Our physicians have be so terrified of highs as well, that I think I need to get over that too. Anything over 250 for 4 hours and they want ketone checks. Based on so much I’ve read it seems folks can cost at that level and be fine (in the short run, obviously. Staying there long term is not good)
I just need to find that happy medium of knowing when to truly be concerned, and when to let the numbers be what they are, taking reasoned measures to improve them if need be.
I am thankful that at least I get to keep him (and my other children with preexisting conditions) on my insurance until he is 26… Thanks to the Affordable healthcare Act. If he doesn’t have his own coverage by the time i am at retirement age, i will work longer to make sure he is covered under my plan for as long as i can provide him the coverage he needs.
I am pretty sure you can Cobra your children when they turn 26, so if you wanted you could keep them on the policy for 36 additional months. Not cheap, but better than no insurance.