Welcome Mike! Really sorry about the diagnosis, while that isn’t the worst diagnosis in the world, we know that everyone would be better off if they didn’t join this club.
Yes, the data points will be great, but honestly, the first 6 months can be really trying because the pancreas keeps doing its thing, and so the techniques you will eventually learn get thrown off by the imbalance and the frustration of variations that are hard to predict because of that darn pancreas.
The learning curve is stupidly hard, but hang in there, there are many of us here and we are here to help, and looking forward to your contributions. You can’t have enough techno - gear heads in one place.
@Mike, it is probably a little early to start looking, but you might want to talk to your endo CDE’s about a diabetes camp for next summer, my son got really depressed about 12 weeks after diagnosis and the only thing that pulled him out of it was seeing a bunch of others with diabetes and many also living with celiac. After that he was much better.
In fact he gets back from diabetes camp tomorrow if your son has any questions. He isn’t on here often, but can be easily cajoled. He is 15 and was diagnosed at 12.
There are a lot of us T1 parents on this site, many if which are engineers or scientists, go figure As @Chris wrote, the learning curve is steep early on. You might want to check some books recommended on this site? For us, Thinking like a Pancreas and Sugarsurfing were the best. Btw, my son is 13 and was diagnosed when he was 11.
I also recommend D camp. My son did not want to go the first year, but it truly made an enormous difference to him. He came back talking about everyone injecting for lunch!
@Michel thanks for the book recommendations. I checked out Think like a Pancreas this morning. Sugar surfing isn’t available in our library network so I’ll look for that elsewhere.
@Chris thanks for helping to set expectations on what the next 6 months will be like. We are doing everything we can to learn as quickly as we can so perspective from others is hugely helpful.
As for camp, we are actually looking into one here in August. It’s a day camp for kids 4-9 and he can bring his sister (which was a nonnegotiable requirement for him ). It will be good for him to see a lot of others his age going through the same thing.
I’ve been reading posts over the past day and I’m excited to read more. Everyone seems very helpful, open, and supportive. Thanks to the co-founders for creating this space!
That sounds like a great option! Anything to prevent or help them deal with the psychological issues, which are often the more difficult thing to treat.
Unfortunately, the brain melt from feeling like you have to learn everything you can to keep your son healthy is real. Please remember to take care of yourself during this time. You can learn faster than you can run trials on your son, so while you may have the knowledge, the need for a stable platform to run the tests is quite difficult in the beginning.
If you are anything like my wife and I, getting a kitchen scale will help you immensely. It took time to convert all of our recipes to weights, but now we don’t have to calculate carbs for a serving on our many recipes.
Last bit of advice, learn to take over the insulin (basal and bolus) changes as you and your wife and son are ready. Doctors are great, but you guys are the boss.
Luckily we have a scale (thanks to the Cub Scout Pinewood Derby) Our biggest challenge food wise is getting our carb loving kid to eat protein and veggies. It’s a journey…
Hi Mike.
This is a good place to learn as a parent because there are a lot of very smart and engaged parents at this place.
I was diagnosed at 5 (just a few years ago ).
One of the best things my parents did for me was teach me to do things myself. I was pretty much running the show on my own by the time I was 8. It takes a while, but as you are learning, help him learn too!
You won’t need to “help” him too much on the meat and veggie front if he is anything like my son. What happened to us is when my son goes from 350 back to normal (after his sugars have normalized for a while) he feels like he has the flu. So we quickly tested and figured out that 100-120 carbs are optimal when he isn’t running cross country. Anytime he deviates (and he does deviate) he knows he isn’t going to feel great and only does it when he has time to recover. Also the CGM will help you son be able to see the effect the food is having on him. It doesn’t guarantee a reasonable carb approach, but it helps.
Welcome Mike! So glad you are here. I know it must be overwhelming in this new stage of diagnosis, but it definitely does get a lot easier. There are several folks here with T1D children, please do feel free to reach out to us whenever you have questions. I have three sons, ages 6, 4 and 9 months. The 4-year-old was diagnosed with T1D when he was just shy of 2 years old.
@Eric We were lucky in the hospital that they started encouraging him to do things himself from day one. That said, we should be encouraging him to do more and more of it instead of taking over so it’s a great push. As for sports, Ryan’s a dabbler in sports - meaning he’s in and out of them. Right now he is taking a break from gymnastics (his choice) and he did baseball for the first time in the spring. Over the summer we’ll be swimming a lot at our local pool just to keep cool and have fun.
@TiaG Thanks for the welcome! I can’t imagine the challenges you’ve overcome getting from age 2 to age 4 with T1D.
Our son isn’t 7 - he’s only 4 now, but he was diagnosed Feb 29, 2016! There are quite a few caregivers here of children with diabetes so we can definitely, collectively, answer any questions or help you in any way that you need! It’s nice to have you here!
For Liam, we started off on MDI, then switched to the Omnipod and Dexcom G5. They’ve been lifesavers for our family!
Again, welcome and I look forward to our future discussions!
You’re in. . Welcome! To someone else’s group. okay… you’ve got questions. These people have got answers. And lots of love and support. So introduce yourself maybe? Or tell them about your boy?? Or just let me know, and I’ll do whatever you want me to.
I don’t know what it says about me, but I have no idea what your picture means… (maybe my glasses would help). Anyway if you click on your menu??? Hold on. I’ll go check.