I’m writing this feeling a bit overwhelmed and looking for some guidance from those who have walked this path before us. Our journey just started this January when my 9-year-old son Leo was diagnosed with T1. We are currently in that absolute whirlwind of the first few month navigating the steep learning curve of T1D.
My son is a US citizen currently living in Germany, and we were fortunate enough to get him into the PROTECT study (Tzield) right away. He is just finishing his first course now.
While we are seeing some stability, I am honestly terrified of the ‘honeymoon’ ending and want to do everything humanly possible to protect his remaining beta cells. But I feel a bit lost on what comes next.
Are there any families here who have moved into follow-up trials or are using specific ‘adjunct’ therapies (like Verapamil or others) to extend this window of preservation? Since he is a US citizen, we are more than willing to travel back to the States for specialized clinics or international trials if it gives him a better long-term outlook.
I’m just a mom trying to fight for her son’s future and would deeply appreciate any experiences, hope, or even just a lead on an expert we should talk to.
Thank you so much for listening and for being such an amazing community."
Hi @JaWa welcome to Breakthrough T1D. That trial has been around a while so maybe you will get a direct answer but in case you do not I hope it’s okay to comment. I was diagnosed in 1979. There weren’t any monoclonal antibody treatments so I went through a diagnosis, then a period of making my own insulin again (called honeymoon) and then completely dependent on injections of insulin in order to survive. At the time there wasn’t even a way to check blood sugar at home. The insulin was terrible. I was 12 I had a normal childhood went to high school played sports went to college had girlfriends failed out of school, drove a truck in Manhattan, got serious, went back to college, graduated with a degree, got hired bought a house, married, divorced, married again and had a kid of my own. In other words, type 1 didn’t end me. Yes it was always a concern but the manual pancreas thing does eventually become a reflex, and routine.
I know you’d rather your child was never diagnosed, but that’s a reality and trauma you both have to endure. You will learn the new language, the new strategies, and you will be an expert. It takes a year and a half. I always recommend the book “Think Like a Pancreas” it has all the starting points and information you need to be successful.
I’ve had T1 for 47 years, @Dennis and others here have the combined experience of hundreds of years of success, so please reach out. There may be Breakthrough chapters nearby where you can get to do local networking please see the “Chapter Finder” tab at the top however most chapters are in the USA.
Welcome to the forum and I hope to see you in the future!
Hi @JaWa and welcome to the Forum. I’ve had Type1 for 63 years now and can second what @joe shared - including the now antiquated treatment methods some of us remember so fondly - there was a time we tested for sugar in our urine with a mini chemistry set and fizzy tablets (oh the days!), and with no way to check our numbers in the moment we learned to rely on how we felt - which is still a helpful backup tool.
Think Like a Pancreas is an excellent resource and supplement to your education, and the last edition was published late last year. I read it first about 3 years ago and learned some new things after all my years, so the learning never stops. Another resource is Sugar Surfing which I have yet to read but I hear is excellent.
The curve is steep to start but understanding and habits will grow over time. Children are remarkably resilient and your son may adjust more quickly and easily than you do.
@JaWaHi Jana, and welcome to the Breakthrough T1D Community Forum!
Unfortunately, I’m unable to offer any information about where your Leo goes now in his quest to avoid full-scale [Stage 3] autoimmune diabetes; I “enjoyed my “honeymoon” as a young teen [70 years ago] by telling everyone that I felt fine before I had ever heard the word diabetes.
What I know about what comes after Tzield, which appears to slow down the arrival of diabetes, is still undefined yet some writers imply cell therapy experiments. I’ve had initial screening for cell replacement but was rejected because of my age and my glycosylated hemoglobin was more than 4% too low.
Leo may qualify for some trials. Look in the T1D Break through Resources” [click next to your icon, top right] for trials. Also, register with T1DRegistry.org where trial invitations are frequently offered. Personally, I have benefitted greatly by volunteering my body for studies.
Hi Jana! Welcome to the forum. That terrified feeling is unfortunately normal but it’ll fade. Delaying the onset of Stage 3 gives you and your son lots of time to learn about how to successfully manage T1D which is a lot easier than it used to be. Keep that in mind, a lot of the information you’ll find is based on diabetes before good CGMs and pumps that integrate with them were available (2020-ish). The time also gives you the opportunity to do some parenting that’s going to help later like teach ways to talk about his feelings, achieving and missing goals and talking to doctors.
Other than education and monitoring, as far as I know, there isn’t a standard what’s next. Partly because Tzield is new and docs are still figuring things out. And the next steps need to be tailored to your son. I did some searching and found a couple of resources that might be helpful although did a doctor recommend the PROTECT study? If so stick with them.
I hope some parents of kids with T1D also reply to your post. If not hit the reply button under this post and let me know if you want me to reach out to some people I’ve met in the BreakthoughT1D Bay Area (San Francisco) chapter where I’m pretty sure we can find a parent with a kiddo that did Tzield.
Almost forgot to say about the A1c test, because you are considering bouncing between the US and Germany, in the US different labs using different test methodologies can generate A1c results +/- 1. Using the same methodology results can vary +/- .5. The differences aren’t usually that big but it can happen so don’t sweat the small changes and check with your doc in Germany, standardization and rigor may produce more precise results.
!), and with no way to check our numbers in the moment we learned to rely on how we felt - which is still a helpful backup tool.
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