Connecting with others at stage 2 T1D and those who have been treated with teplizumab

My 11 yr old son was recently diagnosed with stage 2 T1D (>2 autoantibodies and dysglycemia but no symptoms or need for insulin yet) I’d love to connect with other families in the same situation. How are you monitoring?

He will also soon get teplizumab and I’d be interested in other people’s experience with this as well.

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Hello @kvtarbell and welcome to the forum. A profound majority of us here have had diabetes a long time and are well past onset where a mab designed to prevent the destruction of beta cells could work. I wish you good luck and I hope you find others you can talk to in a similar situation, in the meantime there is a lot of experience here on dealing with diabetes and I hope you find our community helpful in other ways!

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@kvtarbell Welcome Kristin to the JDRF TypeOneNation Community Forum. You are certainly invited to browse here, ask questions and get ideas for living with autoimmune diabetes so you can be ready in the eventuality your son develops diabetes; not everyone with multiple antibodies will develop diabetes.

A place where you could meet people with multiple antibodies and learn more is TrialNet [ Home | TRIALNET Type 1 Diabetes TrialNet ]. I have learned by talking with some representatives.

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Hi Kristin,

My daughter is 12 and Stage 1. We utilize Dexcom, once every few months, to monitor her blood sugar. She actually likes to see the data on her phone and enjoys it. We also have her A1C level tested to monitor. As a mother experiencing a lot of unknown’s related to this, know that you are certainly not alone. Having a Dexcom really helps take the anxiety away.

Thanks for sharing your experience, this is helpful. Right now we are focused on the teplizumab treatment, but after that we will figure out monitoring. An occasional CGM use along with A1c seems like a good idea.

Interested in the infusion as well. There are such different opinions about it. Please do stay connected.

I just completed Day 2 of teplizumab. So far so good! I’m happy to share my experience as I continue through. (53yo LADA type 1)