First, very sorry to hear. Having a child with a condition they will how to learn to live with must be incredibly tough. But on the positive side, we’ve made incredible advances to manage T1D.

I work with an incredible team that focuses on T1D. I’m on the data side though. But the most important thing is to find a really good pediatric endocrinologist that you fully trust.

I’d also reach out to the JDRF for advice (our team works with them).

Good luck

Plan on getting up in the middle of the night for testing. Find a trusted person who can be trained for testing if you are not available, a relative with medical training can be invaluable if you need a sitter or a break.

Get ready for people to mix type 1 with type 2 and try and explain how you can fix it with diet. Get ready for people that assume it is just sugar you need to avoid vs measuring all carbs etc.

Remember with care you can still do almost anything, it just requires more planning.

Good luck, it isn't easy.

My son is also T1D
Diagnosed at 12, now 19

Everyone told us that he must inject before he ate, so we did the exact opposite.
He injects after he eats for what he eats. Family friend also has T1D and we always felt so sorry for her when she had to finish what was on her plate because she had injected for it, but was no longer hungry

The best advice you probably won't get is to make sure that your child has a mix of high and low GI carbs with every meal.
We learnt that the hard way when my son would eat a low GI meal, inject for the correct amount of carbs , and then go hypo as the insulin acted faster than the carbs were absorbed.
Having said that, we always aimed to keep his BGL as stable as possible, so always aimed for lower GI meals
Worked really well when he was younger and actually listened to us (Typical HbA1C in the same range as someone without diabetes).

The first learning curve you need to figure out is to work out how many units of insulin is required for every "serve" of carbs.
My son is a typical lazy teenager these days so doesnt test as often as he should and often injects hours after a meal.

My son was diagnosed with T1D at 12. He is now 28 and lives a healthy normal life. This is a life changing event and is very scary. There is a lot to learn, but you will get it. One of the things that helped us greatly was that we went through an extensive diabetes class when he was diagnosed. This was at Children's Hospital in Atlanta. They literally showed us everything we needed to know - what diabetes is, how to check blood sugar, how to do injections, etc. I would suggest seeing if there is something like that offered in your area. Things made more sense after the class. Even though it was still scary, it felt manageable.

The technology to manage diabetes has come a long way in recent years. They make continuous blood sugar monitors and insulin pumps that you can monitor through your smart phone. I have a friend who could get alerts if their child's sugar went low no matter where they were.

I'm happy to share everything I know about this. Please feel free to PM me if you have any questions.

My son is T1 - diagnosed at 17 - 21 now.

Lots of good stuff above. It's going to be all right - just a new norm. Blood sugar lows and highs are going to happen - don't freak out, you will get use to dealing with both. You will become an expert on carbs and sugars in foods (especially fun when eating away from home). You will be amazed at how your child will adapt.

The insulin pump is an absolute game changer - get one as soon as the endocrinologist gives the go ahead.

More important as your child gets older, T1 covered under ADA - important to work-up a management plan with the school.

This is great advice. At five, he's not going to understand everything he's dealing with but you can. The more you know, the better chance he has of living a long productive life.

As a physician who deals with a lot of diabetics (both Type 1 and 2) who did not properly control their blood sugars (BS) through the years, it is so so very important to get educated about this disease NOW. So many of my adult patients just do not understand why they are going blind.............."my sugar was only 100 yesterday so I don't know why my eyes are bleeding". They don't take in to account the years and years of poorly controlled BS, and how just now correcting your sugar levels is NOT going to clear up this mistakes......you still have to pay the piper.

When I see young people, who've had Type I diabetes from a very young age, it is startling the difference between the ones who took control (along with their involved parents) vs the ones who said "ah, I'm young and nothing can hurt me". For many, an insulin pump was a game changer for ultimate control of their diabetes, and keeping the sugar under control enough to not go blind.

Lots of great advice above. My daughter was diagnosed at age 5, she is now 22. Technology has changed very much in the recent years. Life is much easier with the development of the continuous glucose monitor(CGM). No more finger sticks makes a huge difference in quality of life along with the ability to see the trend of the blood sugar over time. Couple that CGM with an insulin pump you have a hybrid closed loop system that works removes alot of the work in maintaining good control.

When you go down the Insulin pump road, and you will, Look at manufacturers other then Medtronics. They used to be the gold standard in pump technology but have fallen behind. We have used that pump for over 10 years, however there are better pump and CGM combination out there right now. We switched to the Tslim(Tandem) and Dexcom G6 combo could it has been a game changer for us.

Learn everything you can, do not just take someones advice. Knowledge is key!

I have taken care of a large group of patients for 26 years now and I agree. I literally would be telling people to get things in order or you are going to end up on dialysis or blind etc and they would not. That was their choice but when they were genuinely surprised that these things actually happened... Argghh!

---

They constantly try to escape from the darkness outside and within
Dreaming of systems so perfect that no one will need to be good T.S. Eliot

We do some construction work for a company called Semma Theraputics. From the layman terms they explained to me, they are manufacturing an implant that regulates your insulin levels automatically. Something to do with stem cells. But from what they say, with the implant you don't need insulin injections.

Not sure if it's widely available yet, it is a surgical procedure. Something to look into though.

I can talk in the 1st person, 53+ years (diagnosed right before Halloween 1966)

1. This isn't fun but it is manageable
2. Have the best health insurance possible, diabetes is expensive
3. Never use term "diabetic".
4. Learn carb ratios
5. Learn glycemic index
6. Fun food can be eaten
7. Diabetes diet is basically what all people should be eating like
8. He will probably go into a honeymoon period, much less insulin needed, gives false hope
9. Grow him up like everyone else. Being singled out sucks big time (I had big warning signs on my gym folder)
10. teach exercise...cycling saved my life Strenuous exercise is great
11. Learn about possible cures, but don't expect anything. I thought it would be taken care of in my lifetime. Company funded research is on annuity business not a cure. NIH research is critical (political opinion here)

Good luck

T1D myself and the best advice I have is to get as much information as possilbe (some books listed below) so that you understand the management and the changes he'll be going through and secondly, if you have the ability, get a Dexcom G6 continuous glucose monitor.

Insulin pumps are definitely a great tool in managing diabetes and they give you a lot of features and flexibility that you wont get from multiple daily injections (MDI), but I wholeheartedly feel that the best tool in managing T1D is the CGM. As a parent you're able to get alerts on your phone for highs and lows and everyone's a bit different, but for me the accuracy is incredible.

Here's some of the books I'd recommend:

https://www.amazon.com/...33PXV4HJG5462TYDB3B4

https://www.amazon.com/...96X4TRYV6NP0RA145CF0

https://www.amazon.com/...C6XAB9J65E66YB379B86

Not sure if it has been said but the first thing I would do is to look into a continuous glucose monitor. For the life of me I do not understand why these are not given to patients as soon as they are diagnosed. Yes, honeymoon period,yes we don't know basil and bolus rates etc etc. I get all that but it gives you continuos glucose readings so as a parent you're not freaking out wonder if your kid is about to pass out or start eating tissues because he's wigged out with blood sugars at 700...yes that happened.

We have the Dexcom. Might be a bit hard to keep it on a 5 year old....but that's what duct tape is for :-). Seriously get one at any cost. If it's a money issue ask for assistance from the company,JRDF or any other source you can think of. These are, quite literally a life saver in every sense of the word. It will help you learn effects of food, insulin approaches and everything else about type one.

This is a disease that can be and should be managed but at the same time you can't allow it to control your life. It's really about having a healthy life style than anything else. You can't be correcting for every carb and you can't control every carb. Having a treat now and then is perfectly acceptable.

If I didn't mention my son was diagnosed at 7 as a T1D.

Unfortunately I'm late to work but have a ton more to say. Feel free to PM me if you want.

Thank you to each of you who has contributed comments. We are now on day 8 of our daughter getting diagnosed and starting to feel a little more comfortable with the new routine. Some of the take always I have from the above comments include:

Trusted person - we have family close by and each of them have already been part of carb counting, testing, and injections. They have their own binder with all the necessary materials, charts, and phone numbers. We are comfortable others around us can take care of her.

Training courses - we caught it early so my daughter was only at the hospital for 48 hours. Most of that time was spent with diabetes educators and dietitians, making sure my wife and I were going to be competent in caring for her.

504 plan - An educator from JDRF is already scheduled to come give training at my daughter’s school.

CGM - we have a follow up appointment next week with the doc and will discuss a CGM. They wanted to wait a month before going that route and wait 6 months before a pump. A friend came over during the weekend who has the G6 and said get it.

Grow up like everyone else - we have her back in school today and she did gymnastics, etc. basically, trying to get back to our normal routine as quickly as possible.

I would also keep I mind that EVERYONE is different. I have a close friend that is T1D that doesn't eat pizza with red sauce on it because he spikes fast and hard. My kid has a very slow reaction with any pizza. Insulin before, after, split , delayed...on and on you will have to experiment with because what works dirt one person didn't work for another.

For the most part you become the expert. You will in short order know more about managing and living with this disease than most medical professionals. That sounds a bit arrogant but its true.

Again CGM. No matter what the situation is it's helpful. We had the school nurse and any case giver added as a viewer to his CGM. they can see his numbers at any time. This is HUGE especially at school and even more for the younger.

It wasn't until wet got the CGM that we felt we could REALLY sleep at night.

Don't stack insulin since you're on shots. Don't freak out about high numbers. Better a little sweet than unconscious.

As others have said, live life. Shortly after my kid was diagnosed we went to a movie. He was seven and of course wanted a slushie. We talked him down to a small one and didn't fill it. He enjoyed, he didn't feel derived ou're different and with the right amount of insulin we kept his blood levels just fine.

Teenage years are interesting... but by that time you'll be an expert.

Since we will not be looking into a pump for another 6 months at a minimum, what is the best device to use as a receiver in tandem with a CGM?

I may be mistaken because we have always used Apple devices, but I think Dexcom has gone to only Apple devices. The G5 had it's own receiver that you could use or Apple devices. In order to use Dexcom Share, the app that allows you to see the blood glucose levels essentially real time on your phone, the receiver has to be an Apple device with access to cell service.

The person with the shared device can be Android or other but the person sharing must have an Apple.

I know the idea of your five year old having a cell phone may be a bit over the top but really it's the best way to go. At that age maybe the teacher hangs on to it and passes it off to the person who picks them up etc. Mine got his cell phone at around 8-9. We went a year plus without the CGM.

My kids phone is part of his 504 plan. He has to have his phone with in 10 feet of him and is allowed to look at his phone to check his numbers. Some of his teachers have him put in a cubby or someplace near his desk....yes because he's a teenager with no attention span and would end up playing on his phone for the entire class.

Pumps typically come with their own receiver and generally don't use "Other devices". Maybe there are some out there now that do but I think largely for security reasons they aren't going to plop an app on your phone that can control a device that can kill you. They even limit the range of the pump controller so it can't be intercepted. In order for my kids controller to communicate with his pods it has to be within a couple feet of the pod. That being said the field is moving quickly and I certainly don't know everything about every device out there.

16 years T1D here.

I would get with a certified diabetes educator to help you get your feet on the ground. Diabetes is very individual and you will eventually learn what's what and how to fine tune things but... Learn to walk before you run. Build your knowledge over time.

Also helpful is to find a community to embed yourself in to share your frustrations with and learn lessons from.

I thankfully was old enough to pretty much manage on my own when I got diagnosed. The mental burden of diabetes can be very high for you and your kid if you let it. Get him to buy into and learn about management as much as possible. Helicoptering too hard core can backfire.