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.
Hi! My Son was diagnosed this last Feb, he just turned 15. So we are also new to this also, he is handling it well but feels like his new teen freedom has been yanked away! I have read that the honeymoon period starts after about 3 months, and lasts for a few months to over a year. We have had some very scary lows night and day and several readjustments, but if he didn’t get his insulin at lunch a very small amount (little man lost the pen!) His numbers skyrocketed!!! Our team says his body will adjust through this slowly, adjust down (2 day trend for lows) or up(5 day trend for high). You are very lucky he has dual citizenship. The US has the highest prices for insulin in the world. I am Very worried. But at the same time your kid and mine Will be OK. This is just like you said a Whirlwind. Our Children Will Land on Their Feet! They just need Support! All my Love
Sorry it’s taken me so long to get back to you! Especially in these first few months since Leo’s diagnosis, it feels like we’re in a constant whirlwind aka stress mode of learning and adapting.
I really wanted to say a huge thank you for your message. Reading your story was so moving and gave me a lot of hope. It’s comforting to hear that this “manual pancreas thing” eventually becomes second nature. I’ve already added “Think Like a Pancreas” to our list, just like you recommended.
Since we’re still finding our way, I was wondering if I could ask you (and the group) for your perspective on something we’re currently figuring out:
We’ve noticed that the physical adjustment to this new rhythm seems to impact Leo’s digestion and general well-being after meals. He often complains about his tummy hurting. Have you or others here found that the body just needs time to adapt, or do you have any general advice for helping a child feel more comfortable during this transition?
It’s reassuring to know that there’s such a wealth of experience here. Thank you! It really makes the whole thing feel a lot less isolating.
Thank you so much for the warm welcome! It’s incredible to read that you’ve been managing T1D for 63 years. That gives us so much perspective and hope.
My brother-in-law is in his mid-40s and was diagnosed at age four. He often wonders himself how he managed to survive those early days with the limited tools back then. Today, he’s a healthy and very active person, living a great life.
You might wonder why we’re looking for advice here if we have someone like that in the family. He’s been an inspiration, but he’s also very busy with his own family and professional life.
I’m also very grateful for your tips on “Think Like a Pancreas” and “Sugar Surfing.” I’ve already added both to our reading list!
It is very reassuring to know that there is such a wealth of experience here. It really means a lot to us to have found a place where we can share these hurdles, and I’m genuinely looking forward to learning from all of you as we keep moving forward
Thanks for sharing your experience! It’s inspiring to see how active you are in contributing to research.
We are currently enrolled in the Beta Preserve study, which we are fully committed to. To be honest, we slightly underestimated the logistical effort—between school hours missed for Leo, me taking time off work, and my husband juggling our other two children. Even so, I would do it again in a heartbeat.
I will definitely follow your advice, check the “Breakthrough T1D Resources,” and register Leo with T1DRegistry.org for future opportunities.
Since you have participated in many studies yourself: Looking back, is there anything you would advise a parent to keep in mind when deciding if a trial is a good match? I’d be very interested to hear what guided you in your own decision-making.
Thank you so much for the warm welcome and for looking into those resources for us.
We are actually quite familiar with the Fr1da study as our older son was also screened for antibodies through the Fr1da program. Still, I really appreciate you taking the time to look them up for us!
Regarding your offer to connect me with the Breakthrough T1D Bay Area chapter: That would be absolutely amazing. We actually lived in the Bay Area for nearly ten years and Leo was even born in Mountain View, so we have a very special connection to that area. Finding a parent there who has already gone through the Tzield process with their child and who might be open to a digital chat would be incredibly helpful. It would be wonderful to connect with someone who knows exactly what this path feels like.
If you don’t mind making that introduction, I’d be very grateful.
Thank you so much for your message. It means a lot to hear from someone who is in the exact same situation right now. Reading your words about our children needing support and knowing they will land on their feet was exactly what I needed today.
I am so sorry to hear about the scary lows you’ve been dealing with. That is exactly what keeps us up at night, too. It’s so exhausting to constantly balance between highs and lows.
How are you managing the day-to-day dynamic? Does your son still “allow” you to help, or is he trying to handle everything on his own? Leo is quite a bit younger, but he tends to ignore his alarms, so someone needs to have an eye on him constantly.
You are absolutely right about the medical costs. There are definitely things that are better and cheaper here in Germany. I must admit, though, I still miss living in the US; I really miss that positive outlook people have there.
Sending you and your family more power and resilience.
Always happy to share my opinions. And it’s valuable to get them from different sources - your relative offers one perspective but there are many others and many ideas.
Speaking of which - something to think about for maybe next year is diabetes camp. I went a couple of summers as a child and had a blast - and I’m sure my parents were grateful I was having fun while in the care of professionals and counselors well qualified to keep me safe. Back then all we had were injections so beware - your son might come back intrigued by a pump used by other campers.
Hi Jana! Well in a young man, my best guess is there is a new anxiety tied among eating, injections, blood sugar, and Leo’s perception of YOUR reaction afterwards. Children are “next level” aware of your face, tone, reaction, whispers, demeanor, and even body language. They are incredibly preceptive so if you are in the least bit scared after a meal wondering if there will be a spike or drop, this could be a contributor. Kind of like if your kid has a belly ache every Sunday night, it’s time to have a talk about school and what’s been going on. Now there is also a thing called “delayed stomach emptying” that could be a physical thing too. Most conservative approach: Tell the doctor everything. I’ve had all kinds of anxiety directly and indirectly related to diabetes but nothing comes to mind about this particular observation. Let us know what’s happening!
I second this. The delayed emptying is called diabetic gastroparesis but I don’t know that it develops this early - if at all. I would not discourage you from asking about it but I imagine it is related to stress.
I felt for you when I read the replies to your post and no one had a newly diagnosed child/teen. Frey’s big sister has been able to attend all classes with us, that has been a support to him. They are very close and she had just finished phlebotomy training last year.
He has had an emotional response to not being able to just do everything himself. I have assured him that he will get there but we are not there yet. I believe it was a month out of the hospital when he first brought it up. He is a stoic kid, very dry humor, which sometimes leaves me guessing on to best approach his feelings. We are currently counting carbs for him, and doing the logs. He is doing his own injections at home and at school (9th grade in Highschool). We are in communication with the school nurse. He is doing well there, but I had gotten him a crossbody sm bag to have with him for the bacsismi and candy. Turns out after the first cpl weeks he didn’t want to carry it anymore. Then there was the day he lost his pen!!! He still has all his own supplies, but the Nurse now has backups lol. He does feel his lows and we have readjusted down several times and are into the “honeymoon” period. Whether he go to the Nurse for a finger poke or eats a little candy is up to him, 50/50 so far.
I know you said your son is ignoring things, I feel that mine takes most of it seriously and says it’s not to bad. But at the same time has ignored some important pieces that we are helping with or have caught. I got on Facebook to learn from people that stream about being type one, and join community support groups. As an introvert I mainly read lol.
But hey, your post got me n I am here. Email whenever, even just to rant…
On the tummy issue the doc might order a celiac antibody test in addition to ruling other things out. Unfortunately once the immune system makes one mistake its a little more likely to make a couple others.
For when Leo and @sbj9wildcat Sara’s Frey are feeling tied down by T1D maybe let them read or tell them about T1D and Hiking - #24 by 6yGodsGr She asked some questions, made plans then backpacked with friends and guides from sea level to 7500’ and back down again in a week.
I love the idea of diabetes camp – I’ve heard about it before but haven’t really looked into it yet. It sounds like such a great combination of independence, fun and learning, especially being around other kids who “just get it”.
Leo is turning 10 in November, so that might actually be perfect timing for next year.
If you (or anyone here) have recommendations for good camps, I’d really appreciate it.
Thank you so much for this – I’m actually quite touched by your message. We don’t know each other at all, and yet you’ve picked up on so many things that feel very true.
I do catch myself getting a bit tense sometimes when Leo asks for food. I still feel like bolusing is a bit of a guessing game, even though I learned the basics in the hospital. Reading your words made me realise that he probably notices more of that than I’d like to admit… so yes, I definitely need to work on that.
Thankfully, celiac disease has already been ruled out, which was a big relief.
Thank you – I really appreciate you bringing this up. I had come across gastroparesis before, but like you, I wasn’t sure whether it would even be relevant this early on.
My feeling is also that stress might be playing a role here, especially given everything that has happened over the past few months. Leo is also a very sensitive boy.
I’ll definitely mention it to our doctor just to be on the safe side.
!), 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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