my son has diabetes

[Anonymous]

The only other things I'd suggest for right now are to find some other families with type 1 diabetes. Ask around if you know anyone. And then pick up the phone and reach out to them. You will want to have people in your life that you can text with questions, or reassurance. You might also suddenly realize you're out of something -- fingerstick test strips, for example, and it will be helpful to know people who might be available as backup.

Every t1d parent has been where you are. We all remember how overwhelming it is. Other families will be there for you. Someday you'll be there for other families.

Happy to answer any questions. I hope these posts helped and weren't just more overwhelming information.

In the meantime: it will be okay. It will get easier. I promise.

[Anonymous]

Anonymous wrote:wtf do i do

Have you met with anyone yet (diabetes educator, etc) to start the learning process?

First though, take a deep breath. It will be OK.

[Anonymous]

OP, I want to give you a big hug. It is so hard as a parent to grieve the diagnosis when you have to kick into the mode of taking care of your child immediately to make sure they get what they need to deal with the change and, quite literally, to keep them alive.

There is really great technology available to make life easier and you will figure out how to navigate this. Just remember to be kind to yourself and make sure you take care of yourself, too. My son was diagnosed eight years ago and is doing really well, and it does get easier with time.

[Anonymous]

3 years ago my DH was diagnosed with LADA (adult onset type 1).
Even for him that first month was a lot. Figuring out the carb ratio, learning to trust that when he was low controlled fast acting sugar would bring it back up and he needed to wait that out. It was scary, and there was a moment when I was physically blocking him from a box of powdered sugar.
Fast forward, and he feels so much better day to day. He is healthy and robust and enjoys all delicious foods. In the months leading up to his diagnosis he had low energy and was losing weight. If your son was feeling any of this and not able to articulate it, he will feel so much better when he is regulated.
THe technology is amazing and your son will learn to care for this himself.

In his lifetime, there may be something close to a cure.
https://www.uclahealth.org/news/article/first-person-seemingly-cured-of-type-1-diabetes

You've got this. ANd so does he.

[Anonymous]

OP, if there is good news in this, it is this: your son has likely been feeling really bad for a very long time, and he didn't even know it.

He will start to feel much, much better now.

So I agree with the poster who says you are already doing a good job. You are there for him, and you're helping him get what he needs. Well done. Trust that you can do the next part, too.

[Anonymous]

I've been a TID for over 30years. it's not a death notice OP. Calm down and you/your doc can figure it out. Tech/tools available nowadays are lightyears ahead than when I was diagnosed. It is hard, don't get me wrong but you can deal with it.

[Anonymous]

Anonymous wrote:Also overwhelming at the beginning: all the shots and fingerpricks. I hated this part.

Two things that will help A LOT:

1. A continuous glucose monitor (CGM -- Dexcom is the brand we use, but there are others). This is a wearable device that takes blood glucose readings every five minutes. It alerts you when blood glucose is too high or too low. Dexcom lasts for 10 days. You might still occasionally have to do fingersticks (if the Dexcom readings seem off, for example, you might need to double check). But this eliminates most fingersticks.

2. An insulin pump. This is another wearable device. It goes on every couple of days and delivers a steady drip of basal insulin (eliminating the need for long-acting insulin shots), as well as a "bolus" each time your child eats -- you tell it how many carbs are being consumed and it will deliver the proper dose.

Generally, doctors and insurance companies want to see a couple of months of good diabetes management before you can get an insulin pump. Took us a few months to get the Dexcom through insurance, too. But they make everything SO MUCH easier.

+ 100 I am so sorry OP! It is a huge shock and stress. CGMs and pumps are huge- a real game changer in daily management AND keeping complications at bay. It will get better, but am still so sorry.

[Anonymous]

Sorry to hear it. Get him tested for other autoimmune conditions especially Celiac which is associated with Type 1 and can complicate its management. I would start with the tTG-IgA lab.

[Anonymous]

So sorry OP. I’m not a parent but have seen people go through this and it seems very hard but those families are now thriving, though I don’t want to downplay the seriousness of everything that they have and continue to go through. The technology is really improved these days, CGMs and insulin pumps make a huge difference. I don’t have advice but lots of sympathy.

[Anonymous]

OP, my daughter was diagnosed with type 1 diabetes when she was 3 years old. The first year was really, really hard. We worked really hard to learn everything we could about managing the disease, got a cgm and an insulin pump, and gradually got a handle on things. I remember looking at her laughing and playing on a beach about a year and a half later with her brother and experiencing a tremendous feeling of relief that everything was really going to be okay. We did make efforts to connect her with other children with diabetes. She’s off in college, happ, healthy and the most adventurous of my children.

[Anonymous]

It'll be overwhelming for the better part of a year. Once you have technology to help it gets much less painful.

We're 7 years in, he's a teenager now and thriving.

I still fight school, teachers, and sometimes doctors on his behalf. So that part doesn't change. You do become aware of how incompetent and overly confident most people in medicine are, though. Scary stuff.

[Anonymous]

Anonymous wrote:Sorry to hear it. Get him tested for other autoimmune conditions especially Celiac which is associated with Type 1 and can complicate its management. I would start with the tTG-IgA lab.

They get tested every year for new autoimmune diseases. It's standard clinical practice for T1Ds.

[Anonymous]

Here is a really beautiful poem written by a mom in the days after her daughter’s T1d diagnosis.

https://poets.org/anthology/favorites-386