Both those with CWD and other non-d children and those PWD with non-d children - how do you keep from worrying over illnesses your non-d child has, wondering if it’s actually onset of t1?
My toddler has her first ever stomach virus and now that I’ve put her in bed for the night, I’m sitting on the couch kicking myself for not checking her BG today at all, and remembering all the stories I’ve read of parents waking to find their child died during the night because of undiagnosed/misdiagnosed t1. I know rationally the likelihood this is t1 is pretty much nil, as she’s been fine prior to this, no signs, but the worry is still there. How do you deal with it?
Not that I think you need to check her BG, but I hear that many parents check BG while child is sleeping, and they don’t wake up. It may be good for your sake.
I can relate to the worry, as I am a cancer survivor, and many times I think about it coming back, with the slightest symptoms. The best I can do is remember that the odds are in my favor for it not to return, and move on.
Anxiety on the part of a parent can be very real. I do believe a certain degree of anxiety plays a crucial role in keeping children safe. As with all things, there is a balance and a boundary. Discussing and talking about it is IMHO very good and healthy.
I have six children, with one on the way. I have one with T1D and I have never given a second thought about my other children possibly having it because the symptoms of D are pretty apparent to anyone who’s lived through it. If your daughter isn’t drinking all the time, still thirsty, with soggy diapers every hour (or peeing very frequently), I’m guessing she just has a stomach virus.
Don’t let D take over. It’s one part of our lives that we just have to learn to do our best with, but we don’t need to let it interfere with every other aspect (including our other children.
And yes, checking BG in the sleep if you just absolutely have to be sure, is the best way to go…I can change Liam’s POD and CGM in his sleep without him waking up (sometimes), but BG checks are a breeze and he sleeps through them all the time.
Thank you all. Knowing this child sleeps very lightly (she nearly drove me insane with her sleep troubles - only half joking!), I didn’t feel confident she’d sleep through a BG check, and to me, her getting sleep was even more important than easing my anxiety over what I knew was nonsensical thinking. So I went to bed praying she’d be ok this morning, and she was. Hopefully we’re past the worst of it now…
Really? You think they’re all false? (Genuinely curious)
I am very much a skeptic in many things. (Although surprisingly not everything.)
I generally disbelieve things I read on the internet about somebody posting in regards to a “friend” or a “relative of a friend” or “someone”.
I find many internet rumors to have a kernel of truth which is then spun way out of reality for the purpose of drama (for lack of a better word).
I have a child who was diagnosed with T1. Based on the different child T1 diagnosis accounts which I have read, it sounds typical although from a personal perspective the actual events involved during the diagnosis time period were hugely traumatic as a parent.
I certainly assume there is a fair amount of variability involved in the symptoms and the diagnosis of Type 1 Diabetes in general. What I have heard regarding Adult vs Child diagnosis of T1 there is often times a world of difference. There seems to be a wide range of how Adults are diagnosed although it would seem that often times this is a very slow onset with symptoms that may be (initially) marginal and potentially building over a long time. Not all Adults but it sounds like this is quite often the case.
I have zero concerns over any of my other children developing T1 diabetes without me being fully aware with no need for any BG checks.
Not to say that I have not done BG fingersticks of my other children on occasion but that was more of a curiosity to see how high up they would go on a larger than typical meal. Along the lines of wondering what a “gluco-normal” child BG response to lots of food is. Suffice to say that I also completely disbelieve anything along the lines of “gluco-normal” people will always have a BG of 83 or will never go over 120 or anything else like that. Rubbish.
There is a valid issue of nightime BG in T1 children however this comes into play when insulin therapy is being used. WITHOUT administering external insulin, it would be a very unusual case for a child to have a critically low BG during night and AFAIK that would NOT be T1 but rather a different endocrine problem. There are too many potential and rare issues that children may encounter for me to be worried about them. That leads to madness for the parent IMHO.
My larger concern? Everytime my children get into a vehicle. IMHO this is the most realistic danger my non-T1 children face.
Both very good points! My family lives on the rare side of things, healthwise, so I tend to panic a little quicker. It’s good (in a way) to be reminded my kiddos survive more likely dangers almost daily.
Have you considered TrialNet? That might yield additional peace of mind for those times when your kiddos are sick or punkish. At least you’d know they were antibody negative if they were acting funny.
I do know what you mean about worrying that autoimmune thigs cluster in your family. They do in mine too. I honestly didn’t ever consider how much fear that could engender as a parent until I became one. Takes an active effort for me not to go down that road. Well done with letting her sleep! Hang in there.
I’m with everyone who thinks there’s no way you’d miss symptoms of diabetes in a child if you know what they are. I was diagnosed at 750 and only because I caught it myself (thanks Baby Sitters Club books!), but my parents had no exposure to diabetes. If asked, they would have said I was drinking, peeing, eating a lot, and losing weight/feeling tired, they just didn’t know what that meant. So I can believe that parents have lost children if the parents had no idea what to look for, but for anyone aware of diabetes and its symptoms, I wouldn’t worry, you’d know.
Ok… I mean, I know a couple of people who were diagnosed at coma-inducing, they-might-die levels, so whether that was due to parental negligence or something, I don’t know, but it seems like it can happen. I would imagine it’s extremely rare, and certainly not at all applicable here.
Sure—that was my original point, that parents who don’t know what they are looking for and are busy might miss something… it seemed like you were suggesting that wasn’t possible, which is why I said what I did re: neglect.
A little off topic, but I wish teachers would be more active in reporting higher than normal bathroom trips. I was 5, in half day kindergarten. After my diagnosis (and 9 days in the hospital, but no DKA), my teacher stopped over to visit, and told my mom how she noticed the increase in my bathroom visits. She said she even listened at the door to be sure I was really going. My mom had noticed the same at home, and also losing weight while asking for seconds more often. I also was tired all the time. Classic symptoms. Mom brought me to the Dr thinking UTI, as she had never heard of diabetes.
A teacher calling, in addition to my mom noticing changes, may have prompted her to call the doctor sooner.
While it is your job to worry! I would try and not let it get to the point of doing bg checks or other invasive tests. The reason being, you are just feeding your anxiety. After having a D child, I trust that you would be able to see the signs in one of your other children. Having teenagers, I think it would be terrible to be worried about every illness, just knowing how many my kids have caught over the years.
The one well researched case that I know of where the child died, the situation was the fault of both the parents and the physician that mis-diagnosed the child with the flu and sent them home, when the child should have been in the ICU. Things were so apparent (to those of us who have seen it) in that case, that I know you would have figured it out long before things get that serious.
I think the stories about the people whose children die during the night probably (and unfortunately) do not know what to look for. Diabetes is not an on/off switch - it is a slowish development between the start of the autoimmune attack and DKA (if you ever get there). It is nice to start on insulin before DKA. The symptoms start with the thirst/urination thing and then move on to the lack of energy and weight loss etc.
I probably knew that my T1 son had Type 1 about 1-2 weeks before I tested him. It was based on the thirst/urination thing that developed over a few weeks. The trigger for me to test was that he started to leak through diapers at night and he started to become less active. He was not in DKA when I took him to the hospital, but was showing high ketones. I do not have any regrets in not testing him a few days before I did nor is there any obvious damage because he did not start insulin sooner.
I do every so often get those weird worries about my other children having T1, but try to just filter them out with the thought that the symptoms are pretty obvious when you know what you are looking for.
If you’re only talking about Hyperglycemia, then absolutely what you’re saying is spot on. But kids can die very quickly from hypoglycemia. If their sugars drop in the middle of the night and they aren’t treated, this can result in seizures and death. The younger the child, the more at risk they are of this type of death, but it is a real threat for any diabetic. It’s why lows need to be treated immediately before they become a problem.
This is what keeps me up at nights…hypoglycemia. I kick myself repeatidly during those times when I don’t hear Liam’s nighttime alarm and he drops to 50, 40 or lower…I would hate to think my inability to hear an alarm could result in my sons death.
Something to think about. I know you are often using the lowest basal setting available, 0.05 units per hour. But if you set the PDM to auto-off at 8 hours, or whatever your normal sleep time is, then if you oversleep, the pod will alarm and then deactivate. So at least there would be no more insulin being delivered after 8 hours.