I would definitely ask for some guidance on what his bedtime numbers should be - a range; as someone has already wisely stated, it is a convo to have with his doctor - or whoever is treating him while you wait for your first appointment. Hopefully he is learning to recognize symptoms of lows (and highs). I came up before we even had BG meters, and while I tend to be a sound sleeper I would wake up in the middle of the night if I started feeling funny - even in my sleep. I keep some juice and a snack by my bed just in case.
By the way, while you are new to all of this and therefore still learning, you are perfectly within you rights to press for a CGM even though the hospital wants you to do fingersticks. You can do both so you will get the experience and practice of the sticks, but there is much to be said for peace of mind, and the safety aspect of getting alerts is invaluable.
I’ll be nervous tonight, but calling the doctor tomorrow.
We’ve been talking to him about starting to self assess. Not that his levels are coming near norms, it might be easier to discern between high low symptoms.
As far as the CGM, I don;t see him having to wait to long. He’s probably adjusted better to this, at least initially, than mom and dad! I’m sure he’ll have his moments, but so far so good. He will have a CGM for back to school, I don’t care what anyone says.
See if you are able to get him a 504 at his school
I’m sorry to hear I know the feeling my wife and I both have been through it just take it day by day and strength and blessings will come out of it.
Yes, that will be in place for next year. We’ve already contacted the school in prep for next year and the nurse replied that his is eligible for a 504.
Thank you. The only thing that is really a bummer is just worrying about his safety. Being tired and everything being a little hectic, well that’s just life.
The title of your post ends with the words “I’m scared.” And while responses so far have discussed technology and options that might help out, I thought I would take a different track for a moment.
I must start by confessing in not a parent. It has nothing to do with my diabetes, I’ve just never felt that need much less desire to be a mom - I am a caring person but not a particularly maternal one. So I cannot presume to know first hand what a parent of a child with diabetes feels or go through - I can only extrapolate as best I can from watching my parents with me. I don’t know that fear ever goes away completely, but perhaps it morphs into something where concern is the greater component. As my parents saw me recognizing and responding to my own lows and highs (you may recall we didn’t have meters much less CGMs until I was at least a couple of decades in), they relaxed a bit. As they saw me making good choices about my care on my own, they relaxed a bit. When I was younger and they accompanied me on my doctor visits and saw me ask questions and ponder the answers, they relaxed a bit.
You’re all working your way up the learning curve, but I think you said your son is handling this well. There may be some setbacks and mistakes as he progresses, but learning to handle this is part of the education. Hopefully his good attitude will help you relax - as best you can as a parent that is.
By the way, there are diabetes camps you might want to research depending on his age. I don’t knew what COVID-19 has done to that, and it might be something to plan for next year anyway. And there are young people on the forum looking to connect with others their age. I don’t recall the minimum “forum age” (@moderators?) and you would want to monitor things as the forum is open to anyone and - no offense to the true and honest people who participate here - you need to be cautious about connecting online. But people can send private messages of they want to chat out of public view.
Thanks Dorie. I’m definitely hyper sensitive to connecting online. Everyone here has been great so far, but there are bad people out there.
I think my son has actually made it easier. He got a little upset last night when he just couldn’t give himself the nightly injection. He has been doing it himself for the past few days. This is a kid who’s greatest fear in life was having to go the the doctors to have his throat swabbed. Now he’s basically able to manage the early stages of this disease by him self - capable, but not left to do so of course.
If you don’t mind my asking, how is is your son (age range of you prefer but don’t answer if you’re not comfortable). And how come he couldn’t do his own shot this time - didn’t need one (yay!), your turn to practice 
)? It’s great he’s okay with shots - as you probably know some adults are scared of them so he’s off to a good start. Questions are asked in kindness and curiosity - not accusation.
He’s 12. He needed the shot, but just couldn’t get himself to inject it for some reason, then he got upset. I think it was just a “this sucks” moment.
Apologies - I understand. Being upset about it is probably a good sign - it seems like he wanted to push through but couldn’t. That’s what family support is for - he’s blessed to have you.
I was diagnosed 47 years ago at age 16. It was a time when diabetes was managed with 1 shot a day and urine testing. Needless to say, things have changed tremendously. Going with an endocrinologist who is ahead of the curve is key. I have been on an insulin pump for almost 35 years thanks to my late endocrinologist. As a mother of three and a school nurse, I tell all parents of newly diagnosed children how sorry I am because I know, first hand, that it is life changing. But also, that it is like a new baby. In 3 months time you will know what you are doing and won’t feel so overwhelmed. And like new babies, diabetes will be come part of your life. Most importantly, it is a manageable disease. You may not always feel like you have control but you will be the manager.
@wadawabbit HI Dorie, the minimum age for this forum is 13.
@pattyraymond that’s good, you taught me something today. I love the picture of being a manager of an unruly “team” perfect! For teens and adults without children it might be difficult to picture, so I tend to refer to a somewhat arbitrary “practice” rule; 10,000 hours. Since diabetes is a 24 X 7 disease, it’s about 13 months. Still with everything you have to learn and the fact that each of our metabolisms and reactions to heat, stress, illness, exercise, and digestion is different, it can take many years of observations to develop this new talent.
@mawa316, go easy. if he wants you to do the shots, or if you want to push him a little to do his own, only you can make that call. The tough job is knowing how when and where to push. Since my kid didn’t come with an owner’s manual I shoot from the hip all the time (he’s not diabetic but you know, for all things “kid”) IMO the 2 tough things that happen at this point are “honeymoon” and then a little later, when the finality of having an incurable disease sinks in, the grieving process.
In some ways being diagnosed when there wasn’t technology made you develop your inner CGM. I can, to this day, often feel my blood sugar and can usually guess within 50 mg/dl of my finger stick. I’ve been knocked on my rear a few times and I wouldn’t deliberately want anyone to do what i I did, because it was dangerous.
Thank you for the info @joe!
That’s the thing, we didn’t have to push him at all. We were doing the initial injections when we got home then he took over. He got up this morning and injected himself again. He just had a moment I guess, understandable.
So to fully understand the honeymoon phase, is that just that it seems that he barely has the disease, low dosages, etc? I know there’s no formula, but how long does that last?
Honeymoon can be from zero days to well over a year. Since he’s 12, I am willing to bet honeymoon will be less than 3 months.
The first stage of grief is denial. For some, this is a numbness where you just do what everyone says, and do whatever it takes to make the people around you happy. Like it or not, it takes time to begin to feel after a trauma. I was 12 when I was diagnosed. I was Mr. Perfect Diabetes for the first 18 months, but I had trouble with anger and denial for about 20 years after diagnosis because I went inward and shut down.
I have one suggestion, Diabetic Patient Educator, most endo dr don’t have time to spend on the daily routines of a diabetic, the Diabetic patient educator is dedicated to helping patients cope within their lifestyle and have the most experience across hundreds of diabetics. What ever diabetic dr you choose, make sure they have a patient ed person with certifications. Hospitals don’t keep up with the latest diabetic treatments, but it is a good idea to learn how to test blood with finger sticks and inject with a needle, because these methods will be necessary when a pump hits an occlusion and doesn’t warn you or a CGM malfunctions and doesnt read correctly. Diabetes is something you can manage, but it is often like flying a plane in the fog, you might feel like your blood sugar is low and it is high, you need to trust the instruments when they are functioning correctly.
I was heartbroken for my son too at first, but I can honestly tell you 2 years later that life is back to normal, he is happy/healthy/thriving, and I am no longer heartbroken. Thank god for the tech that makes T1D so much more easily manageable! Dexcom is a must. Pump helps.
All insulins types should be handled the same way. A few hours before first using a new vial f insulin remove it from the fridge and store it at room temperature, best in a closed space, cabinet or drawer for instance. Insulins have been tested for strength over time at a room temperature of 86F. They determined that after 28 days the insulin loses 1% of it’s strength, which is considered the limiting factor.
In other words it’s considered useful for 28 dyas at room temperature, though of course higher temperatures much of the time will shorten the time.
The reason I said to take it out of the fridge before use is that injections of cold drugs shocks the skin and worsens scar tissue. Room temp fits body temp much closer, and causes less, if any, scar tissue.
You may also find that once things settle down somewhat for him he may start a “honeymoon period”, where he needs less insulin for correct treatment. Once insulin is injected for a while the pancreas will recover somewhat and produce more insulin than initially, but this is short term. If you find he’s suddenly running low more often than before call the doctor for an insulin dosage adjustment.
Myself when I go low or drop too fast I get changes in vision, usually everything looks so bright I can’t read my monitor or anything else. Mind you the symptoms of a hypo (low blood glucose) may change occasionally, perhaps giving different symptoms for 6 months at a time with minor variations (at least mine did), then a different pattern starts. My main rule is if ANY sensation or perception of reality suddenly changes without cause he’s going low. For instance if he suddenly starts feeling a lot warmer or cooler, but nothing caused that then he’s almost certainly going hypo.
That’s long term of course.
Just a few ideas I’ve picked up treating my diabetes over the last 64 years.
Ted Quick