My son was diagnosed one week ago

Hi. My son is ten years old, and was diagnosed with T1D one week ago. His blood sugars are all over the place from high 200s to low 70s. My biggest concern, and scare is him sleeping at night. If only he stayed up all night. I’m scared thinking he may drop overnight. I can’t sleep, and if I do fall asleep I’m scared every time I wake up to check his glucose. I check it every 3 hours overnight, and correct as needed. One question I have is what dangers bring on high glucose at night. I know what low ones do, but what about highs. Another thing that scares me is the fact that he is very active, and plays soccer. I don’t want him playing anymore to be honest, because I know that with exercise the numbers drop, and like I said earlier I am scared to death for that. What tips and advise can anyone offer me to help me get through this. We are also going to go on a long weekend trip next weekend, and I’m worried about what that’ll bring also. How to adjust our new normal with our trip.

Hi Christine. I remember the terror of diagnosis. Kate was 11 when it happened to us. And yes, the nights are frightening, and my advise would be to do what makes you able to cope. So if you need to check three times a night that is fine. Try to share the load though, because no one can function on continuing disrupted sleep. I try not to do corrections at night - if Kate is slightly high, I leave it. Obviously lows need immediate attention. We also went away shortly after diagnosis, and it was fine. In fact the change of scenery was good for all of us. It is a bewildering time - it does get easier as you become more confident in handling the whole different lifestyle. I hope you have good support - Kate’s endo is wonderful, we used a dietician and have a GP who has personal experience of a family member having diabetes, and they all form a safety net for us. I also connected with a mom of another child at the same school as Kate, and that friendship is invaluable. So - find your people, learn to trust that children are resilient, and know that there is always support for your family. The online community is a wonderful resource. All the best. It is going to be ok.

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Most of us T1D, especially the newly diagnosed and children, get an adrenaline response for hypoglycemia.
There are 4 responses from the body to raise blood glucose. The first is glucagon, but since it’s produced in the part of the pancreas that gets destroyed in T1D, we don’t have this.
The second is adrenaline. Adrenaline is released as the BG drops to 50~80, depending on the person and rate of drop. This adrenaline naturally raises the blood sugar, but nowhere near as effectively as glucagon. I’ve even read that an EpiPen can treat severe hypoglycemia with about 20% the effect of a glucagon shot. More importantly, adrenaline will alert the Diabetic that they are in trouble, usually fatigue and extreme hunger kick in. Your son will have one new prime directive if he wakes up low to adrenaline, to eat everything in sight and then take a nap on the kitchen floor while the sugar kicks in. It’s a natural defense.
Response three and four are cortisol and human growth hormone release, these have the effect of slowly raising the blood sugar. These happen at or below 40 BG.

Aside from what your doctor says, I’d say not to be overly worried about severe hypoglycemia unless your son shows hypoglycemia unawareness, or a lack of autonomic adrenaline secretion when low. Like I said at the beginning, usually only Type 1’s that have had their sugars under tight control for many years, people who experience frequent hypoglycemia, people taking beta-blockers such as heart medication, and people who have neuropathic damage to their autonomic adrenaline system are hypoglycemic unaware. Just make sure you know how much insulin you are administering, and whether it seems excessive.

Hello there, My daughter was diagnosed at 9, she is now 11. Upon diagnosis our educator always said that my daughter would wake up if she had a severe low. That being said, in the beginning I did the 3am check just to be sure. Once you get the hang of managing the condition, I would recommend a Dexcom CGM. It alerts you by your phone of highs and lows. I set the alarm super high so basically everyone in the house can hear it but I don’t care. Over time it will get better. My daughter plays softball and cheers. She just eats a snack before gametime and all is good. You will get the hang of it!

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As a diabetic myself I can feel when I go low, now I know everyone is different but if you don’t allow him to play soccer anymore you are letting the diabetes take over you instead you taking over the diabetes. Always check his blood sugar before practice and a game, if he is on the low side of the range a juice box might not hurt. However, with high blood sugars at night I was get up to pee when I am running high, I know everyone is different but feel free to message me for more help. I was diagnosed at 8 so I know the struggles of feeling like I am unable to do anything

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Hello @Cca1502 Christine, Welcome to Type One Nation.

Please take a huge breath, and understand that this is not the end of his life… and in it not being the end of his life, that there is so much for him to do and experience. Panic, on your part, will be another burden for him to bear in an already heavy load.

I get it you want his blood sugar perfect and lows scare you. Rightly so. His blood sugar will vary, and he will get lows. That is the first law of diabetes. The next big thing to understand is insulin and what to do when he’s high and when he’s low.

Don’t worry, we know this is a new language and it will take time… to the tune of 10,000 hours, before you feel very comfortable with this.

Exercise is so healthy and so necessary and completely safe, once you know how to deal with highs and lows and develop a sense about it. Surely you know that exercise is the 2nd most powerful tool for blood sugar control. Once you learn about this disease, you will likely agree that he must not, under any circumstances, stop playing soccer because of fear of low blood sugar.

anyway, I’ve only been dealing with this blood sugar thing for 40 years, there are others here that make me look like a baby. Please lean on us for advice and support we can take it.

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Hi Christine @Cca1502, first: A Warm Welcome to TypeOneNation Forum! A wonderfully open place for people affected by autoimmune diabetes to share experiences and to find support.

Second: Do NOT stop your son from playing sports, let him be a “real kid” and enjoy life - diabetes will not stop him from living a full, active, rewarding and fulfilling life. Use the really awesome tools now available [and to come] to let him manage his diabetes - with your oversight - and also let him learn to recognize when his BGL [Body Glucose Level] is traveling out of range so that he can automatically take remedial action. TypeOne diabetes can be managed effectively. I’m really grateful that my family did NOT restrict my activities when I was diagnosed in the 1950’s - digital blood glucose meters did not arrive until the 1980’s. and allowed me to grow, prosper and achieve - there is nothing more.

You, and your son, should expect “blood sugars [BGL] all over the place” - both now and in the coming years, especially as he experiences the natural wonders of puberty. BG readings in the high two hundreds are not "bad"in themselves just as long as that is not a constant; and 70’s are okay too - going much lower does need attention. Edward’s @SpecialEDy bit about the body’s self correction mechanism is important. In T1D the autoimmune system destroys the beta cells which produce insulin; it does not usually affect the alpha and t cells which signal the liver to release glucagon.

Wendy @francesjean shared really good insight from a mother’s perspective and I will “second” her advice that you do not administer a correction dose during the night - unless your son’s BGL is pushing toward the 500’s; and I also encourage you not to curtail your family’s planned long-weekend away.

Keep asking questions Christine - and continue enjoying life.

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Ah, I thought it was the beta cells that produced glucagon.
Searched around the internet, the best I could find was that beta cells stimulate the alpha cells to release glucagon for hypoglycemic correction, but this is impaired in T1D with the destruction of the beta cells. I cant find anything more detailed than that, any suggestions of where to look?

Thank you Mary Jo. To hear that your daughter also plays sports helps put me at ease. I have my two week follow up with his Endocrinologist doctor, and will definitely ask for the cgm. How long after your daughter was diagnosed was she able to get that monitor. I also want to get the pump for him, but still don’t know too much on how it works.

Yes I do think the trip will help the family family. It’ll be good to get out of the house a little. I do definitely have to look into a dietician or nutritionalist to help us with out unhealthy habits. My son is not big on vegetables at all so that’s also a struggle. His meals are all high in carbs. Thank you for your input though.

Yes Becca you are 100 percent correct. The doctors at the hospital where we were admitted to when he was diagnosed also mentioned the same thing to us. They said we should go back to normal life as soon as possible. It’s just a little easier said than done I guess. I do definitely want him to live his life the ways he was and just add diabetes to the mix. Thanks Becca.

Thank you Dennis for all your knowledge on all that come with T1D. I guess I will get there soon and understand it all. For now I am just taking everything in, and getting all the advise I can get about this.

Thank you @SpecialEDy for all that information. It really helps me understand this a bit better.

Our daughter was diagnosed 3.5 weeks ago. It’s been a crazy time but it does get better.

We were able to obtain a Dexcom G6 monitor about 9 days ago (so two weeks after diagnosis) and it makes a big difference…as we can track her Blood sugar level on our smartphones…24/7…

We are looking forward getting an insulin pump soon…most likely the Omnipod Dashboard…which will hopefully put an end to some of the injections by my wife and I loathe to do. It also should provide some additional independence for sleepovers and camps but more to come on that.

It’s seem like a really long road to travel and I welcome the sage advice that I am just now finding on this forum.

Let your son do everything he physically wants to achieve…that’s a great problem to have as exercise is a key to health and treatment of T1D. My daughter just completed four events in her first swim meet of the season and no issues at all…even with the G6 sensor!

I remember the days just post-diagnosis well. My daughter was 10 (now 13). I did exactly what you are doing now at night - got up several times a night to make sure she was ok. It was t until we got a Dexcom that I got some sleep, and even now I still set my alarm at least once during the night and check - bug usually I just have to roll over and look at my phone.

My daughter was a competitive swimmer so we had to figure out how to manage blood sugar and swimming. It took some experimenting, but ultimately it was usually a 15-20 g snack before practice and a blood sugar check every 30-45 minutes and a snack if needed. The exercise is great, so I would suggest don’t give up soccer, but work with your son and the coaches to experiment and find what works for him.

It’s scary for us as parents, but it is very important that he does everything he did before. Looking back on it, the best piece of advice I got was from the doctor on the day of her diagnosis when I made the comment that I guessed we wouldn’t be going camping the next weekend as planned. He told me, “No - you HAVE to go! She needs to do everything she did before.” I think this was critical for her attitude towards diabetes, her openness about it, and reducing the resentment and burnout. We did go on that camping trip less than 1 week after leaving the hospital (in the middle of nowhere with no cell service). Her blood sugar ran high the whole time, I had no idea how many carbs she was eating, and it was stressful for me, but ultimately she was fine and that experience and many others over the years helped normalize diabetes, both for her and her friends.

Hang in there, do the best you can and know that it does eventually get easier. The tools for managing diabetes are improving dramatically and in the meantime, you will find that the network of T1Ds (and T1D parents) - people that really get it, have been there, and will deliver insulin (or pump supplies or CGM supplies) to a stranger in need an hour or more away - is an incredible resource and comfort.

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Hey on the soccer thing I was Dx almost a year ago and I was very active before ( I am still very active!) I do Taekwondo a martial art that involves sparring! I actually gear up and fight physically :joy: it drops my sugars but as I got used to the numbers and what each activity does to my sugar then I found I could prepare accordingly. I know that sparring and swimming is a steep drop but biking and kickboxing is a more steady decline. If I am playing with my kids or walking around it does almost nothing​:rofl: you will get the hang of it and yes this is scary but it is not going away so as much as it sucks this is your new “normal” so just roll with it and you will be good soon I promise! And we are all here for you weather you need us or not!! Air hugs to your family and keep your heads up…you will be ok don’t doubt yourselves you are stronger than you think!!

My biggest suggestion would be to get the dexcom g6 if all possible. my little one is only 2 diagnosed at 9 months we almost lost her the day we found out…But this device is a true life saver I cant sleep without it has alarms that let you know when blood sugars are to high or to low even ones that let you know that your going to have a low soon to help you prevent these events I wish you the best of luck having diabetes is hard but were strong.

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Hi Christine,

First off, I’m sorry your son has to go through this. He and you and your family have a difficult and trying situation, there is no hiding it, but rest assured you will be fine. It will all become habit, and with each day will become easier to understand, treat, and move forward with. It’s daunting at first, but you will all get through it.

Lows are scary, no ifs ands or buts about it. Monitoring, adjusting, understanding how foods affect his sugars, noticing patterns in his overnight sugars, and paying close attention to how he responds to a low will help you get through it. Make sure you have an emergency glucagon kit and know how to use it just in case. Preparation for the unknown is key and will help ease your worry. It’s all very foreign and difficult to figure out, and in all reality it will never be “easy”, but with anything new, it will all become clearer with time.

Like others have said, do your best to not limit him. I have been T1D for 18 years now, and never once did I say “Nope, maybe I shouldn’t”. This is all manageable with preparation and knowledge that you will gain. Ensure you have backup sugar, the ability to test if needed, and try things out. It’s not an exact science (LOL, the last thing you will want to hear I know, but it’s the reality of it). If you know he will be active for a time, get some carbs in him early on so he has some buffer to burn through and avoid the lows. I have a pretty good routine with my regular workouts that keeps me stable and avoids the lows. It’s a lot of testing and working through the variables. It will never be perfect, but it will be manageable.

Trips are always an added pressure because change in routine and adjustments to a busier schedule are things to think about. Prepare ahead of time. Always have extra supplies of testing equipment, glucose supply, and make sure you test more frequently just to make sure you understand how he reacts to a change and different routine.

It’s stressful, it’s difficult, it’s not easy, but like I said, you will find the path and managing will become “easier”. Things will become routine. You are only one week in, be patient with your son, be patient with yourself, but remain diligent. 18 years in and I learn something new every day. The technology is rapidly evolving and continuous glucose monitors and new insulins make things more manageable on a continuous basis.

Keep your head up, and although it will be very difficult, try to constantly re-assure your son that everything will be OK. It’s scary, it’s different, it’s hard, and he will go through a LOT with this…but once again, you will all be fine.

Best of luck to you and your son. Take advantage of the knowledge of all of us T1Ds…we are always willing to share and help wherever we can.

Take care!

I’ll keep this brief - you’ve received a lot of good information here already. I’ve had Type-1 since 1980, when I was 23. To deal with overnight lows (and lows or highs anytime) I HIGHLY recommend a CGM - Continuous Glucose Monitor with an alarm. So that leaves Dexcom. The Libre works well but has no alarm - the alarm is essential for your peace of mind. For me, trying to maintain normal blood glucose levels (BGs), the alarm for lows has been a GAME CHANGER. Lows carry an immediate risk. Highs carry the long term risk. You asked about keeping overnight BGs high - that’s the concern. All the best.

There are some great suggestions here. As a Type I, a CGM really changed my life. You did say that you are considering a pump for your son. I’d research, discuss and explore the options in deciding on the one. There is also probably a lot of support and input from other parents online.