Newly Diagnosed 12 Year Old - I'm Scared

So, my son was just diagnosed with T1D and we’ve gone through the education process today at the hospital. We think we have the ‘what to do if blood sugar levels are too high/low’ but I’m just so overwhelmed and my heard it broken for him.

I guess our first bit of anxiety is that his BSL is still in the 200s and 300s (he was admitted with a level of 514) and they plan to send us home tomorrow.

I know there are probably many posts like this and I didn’t get a chance to read through much as its late and I’m just drained and sad to say the least (I’m guessing you’ve heard that before too.).

Just hearing ‘life-long’ is so daunting, but I guess with time or I hope with time, it will just become a normal routine.

Aside from initially trying to get a handle on his sugar level, what are some things we should also be preparing - emergency, quick acting foods in case of low levels, reading up on what to do when he falls ill, etc.

I hope, for my son’s sake we can start to lessen his anxieties!

Thanks for any tips, words of encouragement. I plan on reading through the newly diagnosed forum as soon as time permits.

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There is a book titled “Think Like a Pancreas,” the newest editing of which was just released a few weeks ago. You will probably find it helpful as you are learning. The author has diabetes, works in the field of diabetes, and gives suggestions for those who use a pump and those who take injections.
On this forum you will find people like myself who were diagnosed in early childhood and have been living with diabetes for decades! We share suggestions as well as our successes and failures.
Despite the technological advances over the past decades, as well as increasing knowledge and various types of insulins, many hear the term “diabetes” and “insulin” and - well, let’s just say they think the absolute worst. There can be complications, which some have shared on the forum - but often the can be managed, and many of us live fulfilling lives with or without them.
Some people are diagnosed due to a blood sugar emergency that sends them to the ER. They are treated there but may not have a good consult with a diabetes specialist. So I would suggest you find a pediatric endocrinologist who specializes in diabetes (“endo” covers a number of different areas) preferably board certified. Some diabetes diabetes have a diabetes nurse educator on board - I’ve found mine very helpful, and they can do much of the education while the doctor handles treatment. You will also want to find a nutritionist of one is not part of the practice you select. They can make sure your growing guy is getting balanced nutrients that will help keep his blood sugars in a healthy range.
Some insurance companies have a diabetes help line you can call with questions, and they may be able to point you to specialists in your area.
Having said all that, breathe. Just breathe. There will be a lot to learn and you’ll want to absorb everything as soon as you can, but you also need to give yourself time to absorb it.
I strongly suggest using a Continuous Glucose Monitor - really it’s invaluable for anyone with diabetes. Some (Dexcom, which I use) and Medtronic (and perhaps others) allow you to share your readings with a parent, school nurse or whoever you choose. And most give alerts that you (your son) are rising or falling so you can decide if you need to take action.
You will also need to decide between injections and using a pump. Pumping is generally considered the best way to deliver insulin, but not everyone likes wearing one and some people do fine on injections. I’ve used a TSLIM pump for many years and love it, but it is a personal decision.
It sounds like you are on the right track with analyzing what you need to do. I would encourage you first to find an endo for him who will make sure he gets set up with the insulin types and doses he needs. That typically takes some tweaking so don’t be surprised. I also suggest investing in a good diabetes tracker - I use Mynetdiary myself - it has a huge database of foods and bad on serving size it provides the carbs for me to use to calculate my insulin dose.
Speaking of insulin doses, you are worried about your son’s high glucose levels. Perfectly understandable and you want to get them down. It is very tempting to “stack insulin” while waiting for the numbers to drop. Stacking means you have already given the amount needed, but you add on more because you don’t see the numbers coming down. I do it myself from time to time after 50 years with this, but it is not recommended. It will take a couple of hours for numbers to stay to come down, and it may be just a tiny drop at first then I find it continues to come down slowly. I’ve found I must have water or something sugar free (preferably without caffeine) or I went come down. If you continue to administer insulin while you wait that could cause a crash.
You have a lot to take in and I’ve lectured more than enough. More forum members will be responding so know you are in good company. You can do this!

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Thank you so much for that wonderful information! It really did start to put my mind at ease. I really like the idea of the continuous glucose monitor and the pump. However, for the first 3-6 months, the hospital staff would like to see us use injections and a glucose meter. I’m not sure if that is the norm, but it was explained to us that it would be good practice in case of emergencies, I guess.

I will start with the book and I also found another post I will be reading… Restaurant Risks as that will eventually a concern as well while on vacations.

Thanks again so much and I look forward to learning as much as I can, as fast as I can here on the forums.

Knowing how to do injections as well as do standard fingersticks are both excellent skills to have. I would suggest talking with his endo (when you find one) about starting a CGM dinner rather than later. You can do fingersticks as well, and they should be within range although it’s highly unlikely they will be exact. I typically find the difference between the two is no more than 15 points out so, although “in range” is based on a percentage difference, but number of points. If you start using a CGM that should be part of the education.
Be sure he knows the symptoms of lows - people tend to learn to recognize their own “clusters” but some typical ones include slurred speech, glassy eyes, inability to concentrate, muscle weakness (some people stagger and appear to be drunk). I used to get what I can best describe as a feeling of numbness under my lower lip, and a friend of mind starts to bid off in the middle of the day, even though he’s not tired. And sometimes it’s just a general feeling of unease that you can’t really put a finger on.
Although I use a CGM I find these helpful to keep in mind. Using one, if he’s starting to feel a certain way he can quickly look and see where his numbers are, rather than stopping what he’s doing to do a fingerstick. There is also a “CGM” called the Freestyle Libre. You simply swipe the receiver across the transmitter and the receiver updates readings taken since the previous swipe. It’s quicker and more convenient than finger sticks, but - and this may be a big - it does not have any alarms to alert you of lows or highs. But fingersticks don’t give you those either so this could be an alternative.
Restaurant meals do tend to be very high in fat (and sodium) which may be more of an issue for us adults than your tween. The Mynetdiary app I told you about has carb counts for popular restaurant items - I used to have to go to a restaurant’s website and try to find the nutrition info there. When I compare I’ve found them to be identical. For items at more “mom and pop” style places you’ll need to learn to estimate portion sizes - a nutritionist can help you learn, give you some references, and let you practice. If grandma adds a cup of sugar to get mashed potatoes the typical can count week be off, but knowing how to estimate portion sizes so give you numbers to start with and you can make adjustments later.
BTW, I discovered Cliff Bloks energy chews and really like them for treating lows. Everybody has their preferences - I like the texture and they have a number of flavors.

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Hi there,
My nine year old son was just diagnosed last month. However, his father has been T1D for over 30 years and I was with him for 18 of those, so I was fortunate in having a lot of knowledge going into this. That said, I’m still overwhelmed and exhausted, so I can only imagine how hard it must be going into it without familiarity! You have gotten some great advice from a pro, so I will just add some quick things as another parent. First, my ex has been diabetic for over 30 years, was a police officer, currently has a high pressure, high paid job, and has an A1C of 6, perfect vision, and leads a very active life. And that is with decades of care far below the current standards.
Second, it has been very helpful for us to have a drawer of “free snacks” that my son can have at any time. It is currently stocked with cheese sticks, Carb Master yogurt, hard boiled eggs, carrots and hummus, cashews, and sugar free Jello. He knows he can just grab something here without testing and taking more insulin, giving him a little freedom. Third, follow his lead on finger sticks and shots. I was very surprised, but my son wanted to do his own right away. Again, I think it helps him feel in control. Everyone is different! But don’t assume that it will be scary for him. Fourth, ask for help when you need it from friends and family, whatever that help might be.
Finally, you can do this! And so can he! Sending huge hugs!!!

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@mawa316 Hi Matt, and let me welcome you to our JDRF TypeOneNation Forum! - a wonderful place to find comfort, and learn much about living with someone, and with a loved one, who has diabetes. Yes, you have learned a few of the “basic necessities” for managing diabetes (TypeOneDiabetes can not be controlled - it has its own mind); managing diabetes is an ongoing learning process, and I’m still learning even though my diagnosis was in the 1950’s. Just keep asking questions, and sort through what you hear and apply to caring for your son. What is your son’s age?

Don’t be too alarmed by your son’s glucose levels being in the 200’s and 300’s at this time - it will take a while to find the correct insulin dose and the timing of his injections. As time progresses, you and your son will learn how to make minor adjustments in insulin. Managing diabetes focuses on learning a balance between food, activity, and insulin; additionally there are dozens of other factors that affect glucose levels.

My suggestion, focus on the positive. Even tho you are scared, try to remain positive with your son - these days, with awareness and self care, diabetes should not put any limits on what your son can achieve, and in fact, with his growing awareness of his need to listen to his body, he may lead a longer and more fulfilling life than the general population. That’s my personal experience.

Another thought, “good” and “bad” are never terms to be used to describe a blood sugar check; use in stead, “in-range” or “out-of-range”. Finger-stick checks and lab tests are to be used as pieces of information to be used to make treatment decisions - such as adjusting insulin or adding food [carbohydrates] at certain times of day or during or before, exercise activities. There are many “diabetes tools” you will be hearing about, but it is my strong belief that until you son masters the very basic “how he feels” he should stick with his BGM [blood glucose meter] and injections with a needle. He, unless he is very young, should be able to recognize when his glucose level is dropping and that he MAY need to eat something and adjust his activity. The same principal applies to when his BGL [body glucose level] is getting extraordinarily high. All the “tools” instruction manuals tell us NOT to take action unless our bodies are giving us similar instructions; in time, if his doctors prescribe, he could begin using some of the assist mechanisms. Note: I currently use an AIDs [Automated Insulin Delivery system] , fully automated where the only “hands-on” for me is to enter carbohydrate count estimates.

From time-to-time, I may offer you SUGGESTIONS for how you assist your son manage HIS diabetes; keep in mind that my writing is based on my experience and that I am NOT a licensed medical professional.

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Thank you all so much for the kind words of encouragement and excellent information and pointers so far.

We’re feeling a little better today and I think he will be discharged tomorrow. He was a little more relieved as his blood sugar level was 127 on the hospitals glucose meter this morning before eating breakfast (food service has changed in the hospital and is an absolute disaster, which is a topic for another forum, but it didn’t help the situation).

The doc changed his dosage yesterday so that probably helped.

We wanted to test the meter we will be going home with (Accu-Chek) so we checked 2 hours later with that and it was 288. I wouldn’t have thought it to be that high after the insulin right before breakfast, but at least my son didn’t panic this time as he’s realizing the levels may be a roller coaster ride - at least for now.

One important aspect mentioned was my son learning what he feels like when levels are up and down. That’s a concern at this point, but we can always just check his level when in doubt.

I already ordered the book mentioned so that will be good reading I’m sure.

I realize this is life long ride, but I want to learn as much as I can as soon as I can. While researching last night after connecting on this forum, it became quite overwhelming. The good thing is I think I have a beginner’s understanding of the “basics”. The real adventure without the immediate safety net will begin tomorrow on discharge.

Thanks again for the replies. They’ve been comforting and helpful!

Get him on a pump and cgm ASAP. Tandem’s control IQ or Medtronic’s soon to be released 780 will make life much easier. Also, dump that accu check and get a contour next meter.

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Control IQ is an advanced feature of a pump made by Tandem. It is up and running :tada::tada:and I hope to start on it soon. Right now I’m on Basal IQ, which helps adjust insulin flow (pump basal rates) to prevent lows. Control IQ will help with the high end as well. That’s a very basic summary of the technology to hold you for the moment since you are only a few days in. Your son will need to have a doctor to prescribe a pump of you choose to go that route, so take care of that first.
There are lots of different meters to choose from and some are more accurate than others although in theory at least they must meet certain accuracy parameters before going on the market. I myself have used an Accuchek for years but the Bayer meter Jason referenced could be great as well. Apart from accuracy, people prefer a particular meter for various reasons: color and size of the display, sample size, how it feels in your hand or how well it fits in your pocket or purse. Silly, simple things perhaps but they make a difference. In some cases the brand of meter they use is dictated by insurance.
Attached is a Consumer Reports rating - there should be some on diabetes websites as well. If the hospital dies any follow up to see his things are going they week probably assume you are using the meter they gave you so with ask respect to Jason’s suggestion I would stick with what you have for now.
https://www.consumerreports.org/cro/blood-glucose-meters.htm

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OK, so I guess we’ll go with the Accu Chek for now as that is what the hospital did give us. I also have another meter at home we can try as well for comparison.

I can understand the point of staying with the injections and meter so that my son can maybe gain a better understanding of the symptoms around high/low levels. That’s what the hospital said will be the case for 6 mos, which seems long to me. I would hope he could get on a CGM before he returns to school. That way mom, dad, and nurse can be notified as well, which I see as huge peace of mind.

But believe me, I want him on a CGM ASAP!

I do have another quick question and this isn’t really part of the overwhelming diagnose, but a detail about the insulin he was prescribed…

Novolog & Lantus.

Are these to always be refrigerated at all times aside from injection time, of course? I think one of them, Lantus instructed to not refrigerate once opened, which I believe to be after first use/injection.

So far so good I guess! And, again, than you so much for the replies.

Find an Endo that is forward thinking and embraces the new technology in diabetes management. There is absolutely no reason for your son to have to wait 6 months before being put on a cgm.

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Thanks Jason, I’m with ya! I’ll be pushing for that for sure, especially when its time for back to school (if that is even part of everyone’s ‘new normal’)!

You’ll definitely want it for when he’s at school. Good luck

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Thanks Jason1! I just like the idea of alerts!

That’s the whole point. Knowing a low is coming before it hits is a huge advantage.

Here’s the next question. He’s currently on a Constant Carbs diet where he eats 60-75g of Carbs with each meal.

Then we read that as soon as possible one should move to Carb Counting, which seems to be giving fast acting insulin in ratio to what you are about to eat. Then check a few hours to see if the ratio is correct.

My question here is, if all of that information is correct, and I know everyone differs, but is there a typical time frame to switchover to the Carb Counting method or is that just based on Doc’s orders?

You should always count carbs and give insulin accordingly. Some foods will affect the bg differently like pasta and pizza.

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It’s best to proceed with doctors orders, especially since you are brand new to this. I’m guessing the hospital gave you some basic information and enough to get you started once you got home. With carb counting you must determine the insulin to carb ratio for meals - that is usually done with a pump since you can dose very precisely. I recommend you continue as advised by the hospital for now, until you find an endocrinologist who can teach and help you manage his treatment, learn about the tools, and help you decide between the various options.

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Oh, we’ll definitely proceed as ordered and have the 60-75g of carbs per meal. I was just wondering when the switchover might take place from the set amount of carbs to variable amount of carbs and ratio. I definitely know we’re not ready for that.

I guess we are headed home tomorrow so we’ll be off and running then! It seems my son is starting to understand the ups and downs of levels and that the docs are trying to zero on on what will keep his sugar levels lower. Things were trending to a good range I guess you would say, but later this evening his uneasiness increased as things were back in the 300s (309 & 317). My anxiety was there as well, but didn’t show any panic.

I’m wondering how long this zeroing in might take. I think I saw, and this will be gone over at discharge, that our acceptable range for now is going to be 70-350, which my son can’t wrap his head around. During our education session we were told that if level is trending high, at 250, start drinking water and test ketones then check level again after two hours (unless ketones are Moderate level, call Doc). I guess its just a little scary to have a range of 350 as safe, but I guess/hope that’s just part of the zeroing in process.

I’ll stop for now as my mind starts racing as I think of everything. If its better to parse out some of my questions to other posts, please let me know. Otherwise various questions will flow here!

I imagine they are giving you such a high, high as you adjust. As you become more skilled in managing things that number will decrease, but since you’re figuring out dosages and how his body responds to corrections, they’re giving plenty of leeway to start with. As far as determining how long the setting in process might take, I think it could take a few weeks. Keeping extremely detailed records may help shorten that by reducing unknowns as you work to tighten things up.

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