Balancing the needs of your children (T1D and not)

Parenting a D-Child
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So, this is something that has been eating away at me for the past two months or more.

Samson’s blood sugar control lately has been really terrible. We went from an average BG of about 127 and an average SD of about 40, to an average BG of about 133, with an SD of 52!!! Tons of high highs (over 300), lows below 60 that last hours, missed site changes, tons of overcorrections with low treatments, tons of rage boluses. Everything feels pretty out of control with his numbers.

What’s changed?

Well, we had another baby. We bought a house. We moved into a new house. His sensors have been flaking out at the same time as we’ve seemed to have some absorption issues. We had no Internet of cell reception, so his artificial pancreas has been non-functional.

But also, we’ve been really, really tired. Because of nursing difficulties (a tongue-tie, clipped twice, which still prevents efficient feeding), I have to follow a punishing schedule of pumping and nursing 12 times a day, which pretty much ties me to the couch or the bed most of the day, at the same time as I don’t have Internet access to BG data. Which means I am not looking at Samson’s numbers. The new house also means the kids are running across a much vaster distance, which also means Samson’s out of range of his receiver a lot more often. Those 15-minute data blackouts add up.

And because I’m up at night at least twice for an hour to nurse the baby, my husband (or my MIL) has been monitoring Samson’s numbers at night. But my husband is just not as vigilant as me and, quite simply, does not wake up to the alarms, and my MIL doesn’t fully understand the rules for insulin delivery, so she can’t do much when he’s, say, 300 and my husband sleeps straight through or yells in his sleep “he’s fine.” Ironically, his control is at its best when he’s at school, under the care of minimally trained but vigilant teachers who are being more attentive lately than we are able to be.

This has been making me feel pretty guilty. Every time Samson wets the bed because he’s been high all night, or every time he has a horrible low, I feel like it’s because I’ve let him down. But I also feel like it’s important to at least try hard to nurse the little one, because of the (admittedly weak and unconvincing) hint of a connection between feeding method in early infancy and the risk of developing T1D. (This is particularly ironic because Samson got mostly breastmilk whereas my first got none, but I’ve now convinced myself that the increased risk may be more prevalent with a mixed feeding strategy versus exclusive formula feeding because of its effect on the microbiome.)

On one hand, controlling Samson’s BG in the here and now is going to concretely affect the risk of long-term complications in the future, whereas there’s really no good evidence that feeding Colin a certain way will ward off this disease. On the other hand, I’d never forgive myself if I didn’t do everything possible to prevent this disease, now that I know the increased risk is there. And from a practical perspective, one of the things that will definitely allow me to keep my focus on Samson’s disease management is if his brothers stay relatively healthy.

So I’ve really been struggling with how to balance the needs of everyone, and sometimes I wonder if it was foolhardy to bring a new life into the world when I know that it directly impacts Samson’s well being.

I know this season of craziness will pass. Kids grow up and babies stop nursing. Technology gets better and we get better at juggling things too. And while I’m dreading the A1C reading Samson will get on Monday, I know it will just be a blip in the long life of his disease. But still, I can’t help feeling conflicted and guilty about things right now.

For those who have multiple kids, how do you balance the T1D child’s management with the needs of everyone else? We had a routine, and now it’s all blown up. I’m hoping to get back to that routine soon.

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I’m afraid I can’t answer your question, but I just wanted to chime in that I am so sorry things are so challenging right now (and commend you for sticking with it breastfeeding Colin with a tongue tie…both of mine have been tied; it is not for the faint of heart). As you said, this is just a small blip in Samson’s life. This is a period of adjustment. There will be other things that affect your/his control of his BG that are unavoidable, just like this, that will require a period of adjustment, and that’s ok, just like this is ok. Please give yourself a little grace while you get through it (and y’all will get through it)!

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You have a MUCH more hectic schedule than my wife and I so we really can’t at all compare our families. @ErinElizabeth is a stay at home mom and does EVERYTHING there is to do for our boys except Diabetes management for Liam (and she helps with that also). She studies with our kids, she does all the shopping, she does all the doctor’s appointments, all the birthday parties, etc., We both attend extracurricular activities that our kids partake in, but honestly…my wife works 1000% harder than I do. I am able to telecommute 3 days per week (soon full-time telecommute…but I may be losing my job…contract issue for another subject on another day.)

She has breastfed all our kids for 1 - 2 years…until they wean themselves. When she’s pregnant, except for a short stint when she was working, she’s always been able to “lie down” during morning sickness days to make the nausea pass. We don’t have the daycare issues and a big reason why she’s a stay at home mom is because we were paying more each month in childcare than we were on our mortgage. As an Accountant, she wasn’t making that much money so we just agreed to move to a cheaper area with a lower cost of living where I could be the “bread winner”, but she would do most of the work.

My main job is support her and do whatever she needs me to do around the house (I do dishes regularly, but never do laundry unless she asks me too because I “accidentally” mess things up.) So I make the paychecks, and she does everything else and we both manage Liam’s Diabetes. We’re also stretched thin with time with the number of children we have, but we just do the best we can.

Honestly, though…I started coping better with Liam’s diabetes management when I just refused to accept any guilt (Well, this isn’t entirely true…I always feel guilty when he has a low or a high, but I don’t dwell on it.). We are dealing with his BG management as best we can. We’re learning. We will have lows. We will have prolonged periods of highs. I’ve just ACCEPTED this…if I don’t accept it, I’ll drive myself crazy. So our goal is to have more good days than we do bad days. The last 14 days for us have been filled with crazy lows (2% severe low rate over the past 2 weeks.) Partly because I’m just not hearing the phone/receiver during the nights and Erin is dead to the world when she sleeps. But he’s been sick with runny stools for the past 2 months and some congestion issue going on that’s causing his BG’s to act strangely…I just react to whatever his BG is directing me to do. That’s all I can do.

Anyone that remembers me a year or …now almost 2 years ago, now…knows I was driving myself insane with this. I was sleeping maybe 1 hour per night, writing programs that were going to provide me with the “magic formula”, etc.,. Since we got Liam on the CGM and pump and since I accepted that Diabetes is just a son-of-a-***** to deal with…I’ve just settled into the fact that he’s going to go low and he’s going to go high and I’m just going to do the best I can do to keep his A1C as low as I can while trying to avoid severe lows as frequently as I can.

Emotionally and mentally, though, I am invested probably 75% of the time with thoughts of Liam. We make sure to give all our boys “their time” though and we have to constantly remind ourselves that we have lots of kids that need (and deserve) our love and we can’t skurt their attention because we happen to have one son with Diabetes. Fortunately, all my sons realize how hard Diabetes is and they understand that Liam needs more attention.

When you’re having an especially rough night just take a deep breath and remember, “This too shall pass.”

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Sending positive energy your way, Tia. Hope your routine comes back into play very soon.

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@TiaG, I cannot even imagine how difficult it must be to deal with the upheavals you are confronting. The baby, of course, is the hardest—but everything else, each one, would be enough to make things a lot harder. And, with Samson, given his age, you have the hardest D burden of all, a very young child.

We only have two children. Last Spring, my college son broke his foot, at school (3,000 miles from home), right before finals. He was scheduled to go on an internship that summer that would require daily driving. My wife flew off to CA for 10 days to help him out. Then I flew to Austin to help him move in, figured out with him how to deal with his internship, and worked multiple hours a day with him for the rest of summer. In both cases, one of us was largely unavailable to my T1D son. He was not so brittle last summer on Lantus, but there is no doubt that his control was somewhat impacted from the regular routines we have at home.

Harold was discussing earlier that he does all he can to share his time between his children, but that he spends 75% of his time on Liam. I have come to accept the fact that the proportion will hold true for us too. But I cannot renounce caring for my other boy when he needs help either. I think, in the end, the amount of time we spend on D care, however much it is, also needs to be in an equation with all the other tasks of our lives—the most important ones being our other children, but also everything else: moving, remodeling, work…

Both my wife and I have made career choices following my son’s D diagnosis that allow us to spend more time on D and on my son. But we have not curtailed ALL work, and ALL other tasks, and certainly not our other son, although we are ready to spend more time on my T1D son, because it is the nature of the beast.

As for your decision to breastfeed your newborn, my opinion has absolutely no importance, but, FYI, I support your analysis 100%. We did the same with both of our kids btw: they were breastfed for about 7 months each, even when my wife was traveling it lot. She would pump on the road, and we had a stash of frozen breastmilk that I would use when she was gone. That did not stop my second son from getting D of course. But I figure at worst it can’t harm, and at best it will significantly reinforce immunity to many possible sources of future health danger.

Unfortunately, I don’t have any tip to give you. We spend all of the time we can on our T1D son. When our other son needs us, we do whatever he needs, within reason, and our T1D’s care gets worse for a while. I feel guilty about it but my reason tells me this is the right thing to do.

The main issue, imho, is your psyche. You are doing the best you can in very challenging circumstances. Operationally, you cannot do any better. You have taken very rational decisions (of course, given who you are!). But you are permanently tired and recently gave birth, and Samson is facing daily challenges. Naturally, you feel depressed and guilty. Alleviating that is, I think, more important than other issues.

FYI, our recent events had led me to feel the same, btw—but I am aware that it is the wrong thing :slight_smile:

Would you like me to fly over for a week and help out to give you a little respite?

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I’m so glad that @Michel has chimed in on this thread. When I was reading both of your current situations, I was thinking that they had a lot in common – even though they appear very different on the surface. You are both super parents, and I think your children will grow up to appreciate what an investment you have made into their future.

I seriously wanted to offer to do that for both of you. Breaks my heart when friends are hurting. :broken_heart:

@TiaG I am sorry that it is so rough. Things that would’ve seemed exciting, have turned out to be unexpectedly, temporarily burdensome (leaving the old place! new house! time at home with baby! bigger yard!). I think that in the long run you are making all of the right decisions for your family and it will eventually smooth out. Keep hanging on!

It sounds like some things are working really well – like school being a continued spot of success in Sampson’s BG numbers. Having grandma as a spare set of hands - maybe she can begin to improve with your help or learn to ignore your husband in the middle of the night? And maybe the alarm/receiver in a metal bowl of spare change to clang around in would help your husband at 2am? EH sleeps through his and claims he doesn’t. :wink: We all need sleep, so it’s understandable that everybody at your house is a little frazzled! I wish I could send you some sleep to enjoy.

I do send positive thoughts your way, and I hope that your Internet is up and working soon. Sampson will forgive you, and probably enjoy having a little brother to be the boss of down the road. :slight_smile:

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I’m going to be arrogant and say sternly “Stop beating yourself up.” BG of 133 corresponds with an A1C around 6, which is nothing less than a great result. Ask your endo, but in my layperson’s opinion you are taking excellent care of your child by achieving a BG average of 133 with SD of 52. We all have been told that lower and flatter are better, but you are already well into the region of good health and diminishing returns from further tightening, so you should be celebrating your truly amazing good results. Striving for continuous improvement is fine, but don’t lose sight of the great result you have achieved at the current levels. Be kind to yourself.

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I agree with @bkh and all the other comments, though I’m not a parent so can’t give specific recommendations. We all strive for tight control on this site, but short periods of less control are not going to be disastrous long-term. My two-week stats are worse than the stats you posted. It seems a lot of us here are having difficulties with BG management at the moment. I know it’s frustrating, but things will calm down eventually and you can focus more on diabetes control. Incidentally, when I use a Cozmo it had a home screen that could have a customized message on it. Mine was, “This too shall pass.”

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Thanks @All for your kind thoughts, and @bkh and @Jen for the sense of perspective. I’ve been swamped so havent had a chance to reply.
@Michel

Would you like me to fly over for a week and help out to give you a little respite?

That is such a kind offer. I see you guys are also pretty overwhelmed with Kaelen’s BGs lately so it’s an extra kind thought!

You guys have a lot on your plate now and you need to sleep. But in a strange way I can see how looking after someone else’s blood sugar for a while might still be a mini vacation – at least from all the emotional baggage that we parents carry to the job.

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UPDATE: So we went to the endocrinologist yesterday and Samson’s A1C was 6.5, despite the 2 months of crummy BG control. So the number itself I’m happy with, although I try not to think too much about how many lows may have gotten him there. (6.5 is higher than his average BG would suggest but that’s been the case for several A1Cs now with Samson, so I’m not surprised).

As to @bkh’s statement that this type of control is a great result – well I think you’re right that the end result seems really good – but the way the days feel is night and day between a 52 SD and a 40 SD. I would take an A1C of 6.8 with an SD of 40 over an A1C of 6.0 and an SD of 60 just in terms of quality of life.

We feel out of control most days, and Samson has at least a few scary low episodes a week that make us slightly freaked out, where it sort of flits in the back of my mind “I hope I know where the glucagon is.” Or situations that just feel very in the dark, where there’s no data all night long and I wake up and realize Mitch has not been monitoring, and we test him and he’s 39 – how long was he that low? What happened in the meantime? Or he’s been in the 300s all night and I see no corrections and openAPS was off. Was his pump site dislodged? Is he going to wake up in DKA?

We are nowhere near @Michel’s level of tight control, and for instance I will happily let Samson ride in the 160s all night if it means a night interrupted only by the baby. But even with our wider latitude, it’s just that the day-to-day feels more like a precarious Rube-Goldberg machine that could all topple over at any moment. While we try to ride the good times and aim for tighter control when we feel in control, our baseline goals are much more modest: a) keep him safe from deadly low blood sugar b) keep him safe from DKA. The fact that those types of situations could conceivably have occurred in the past few months is what makes me feel the guilt I think. And ironically being less vigilant about Samson’s numbers in some ways contributes to that because we have more of these close-shave situations and near-emergencies.

But @ClaudnDaye Daye is right: the guilt is counter productive and the best way to ultimately regain a sense of control is to not dwell on past “failures” and just keep moving forward.

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Tia, it is worth pointing out that many of us were overwhelmed by just having two children close together, without any diabetes management. So in my book, you are a superwoman!

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That’s a concrete issue that you could focus on to get a big payoff. There must be some way to make the alerts impossible to ignore, because the weak link here seems to be alerts that are not acted upon. I know that for myself, when I go below 60 it is because the CGM alerted at 85, but I was busy or distracted and didn’t take the glucose. Hmmm, maybe I should try changing my Dex alert profile from soft to attentive, especially at night.

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This is our issue currently also…we’ve been hearing the alerts for so long now that they’re coming part of my dreams and I just sleep through them. It’s a horrible, and scary feeling to wake up after the 5th alert and they’re either super low, or super high. There was a thread earlier, although I can’t find it anymore…perhaps someone can re-link it…where some device could be purchased that hooks up and either turns on lights, radios, or something like that to help in the waking up part. I am at the stage now where I need to invest in something like this in my house.

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yes, this is a huge issue. The real weak link is data connectivity. First we had no internet connection, but that’s been solved. The second issue is making sure the phone is with him at all times and that our openaPs rig can communicate with his pump at home. At school he wears his phone in a pocket on his back so it’s always transmitting data, but our receiver just died and so we’ve been leaving it out of his pocket and just looking at it. But then he runs from room to room. In our old apartment it was small enough that one rig in the closet could cover the whole house, and that the phone could get bluetooth signals pretty much everywhere. Now we need to remember to follow him with the phone every single spot. WE need a better system and may have to put the phone back in his pocket, but it is nice for him to have some time without a bunch of stuff to carry around. I’m wondering if there’s a better way to do this, some kind of signal boosting maybe?

The second big issue is that we think he may have scar tissue from Dexcom sites on his arm, leading to flakier data and shorter sensor lives, bigger data blackouts etc. We will have no data for hours on end sometimes, and even when Mitch wakes up and sees it, he may test once and then decide he’ll just do sensor change in the morning and take a chance that data will return. Then he’s sort of mentally told himself to ignore the alarms so even if the data doesn’t come back for hours, he’s sleeping through the subsequent alarms.

So one solution there is to try new sites. So far we’ve been reluctant to disrupt his routines this way as the sites on his belly are typically more painful. But we will do this if we keep getting such huge data blackouts.

Also we have a smart Wifi siren somewhere, but I think it’s been misplaced in the move. That also helped us a lot in the past house. I’m wondering if there are smart systems that can call a landline. We now have one and I think that would be more difficult to ignore than just the transient sirens.

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Didn’t someone on TuD train their dog to respond to Dexcom alarms? Maybe you can combine this issue with the Get A Dog thread, and train a dog to bark/wake you up when the Dex goes off… Or in @ClaudnDaye’s case, I guess it would need to be a DexCat, so maybe you can train one to expect tuna or something good when it goes it off, so it will wake you up for its treat, haha.

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WE have a cat. She’s basically the awesomest, most beautiful cat in the world (no offense to all you other cats out there!) but I don’t think she’s up to the task. :rofl:

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Here is the post:
sound_activated_alarm

It’s $55. Here is the link to buy.

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Hmm, the one you linked only notifies by flashing lights or by vibration. Is there one that makes loud sounds?? I sleep with my eyes covered (have to have perfect darkness when I sleep) and vibrations aren’t possible (or wouldn’t be heard) due to where the cgm/phones are placed in our bedroom.

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Actually the device doesn’t do anything by itself except turn on the outlet. You plug it into the wall, and the Dexcom alarm triggers it to turn it on.

Whatever you want to notify you is plugged into the device. You can plug a vacuum cleaner into it. Or a radio cranked all the way up. Or a blender filled with marbles.

Anything you want to plug into it.

The Dexcom alarm turns on the device outlet, and then whatever is plugged into the device outlet would automatically be turned on.

The only thing you need to do is adjust the sensitivity of the device so that the Dexcom alarm turns it on, and find some really loud electrical device to plug into it.

They have an optional device you can buy in addition to it that shakes your bed (I guess for hearing impaired). But I think the bed shaker is kinda expensive

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Awesome! Thanks for the clarification!

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