Hi all. My daughter is 7 years old, diagnosed at 4, so we are no strangers to T1D. We do well with it, but it’s never been easy. (Nothing with T1D is, amiright?) Then, 1 month ago, my 11 year old son was diagnosed. While we are “old pros”, it has been the hardest month of my life. Diagnosis is SO different for an 11 year old boy than it was for a 4 year old girl. Also - School! My T1D daughter goes to a public school that always has a nurse on duty. My newly diagnosed 11 year old goes to a private school with no nurse. I have 2 other kiddos ages 5 & 9 and I find myself wanting to check their BG on the daily “just to make sure”. Like I’m waiting for the other shoe to drop. It’s a terrible feeling. I know all the things they say…at least you are a diabetes pro…at least it’s not cancer…at least he’s 11 and can do things himself…yeah yeah yeah, I get it. But this is hard!!!
Hi, Andrea @DJAdgieB,
Yep! It is really, really difficult. Ugh! I feel for you.
I was diagnosed with T1D when I was five. Thirteen years later my older brother developed T1D; he was 18 at the time.
To me, managing diabetes well is a combination of, first, education, and, second, experience. And then there is that third issue - frustration tolerance or “temperament.”
It has been my experience that kids from the same family, despite the same “common gene pool” and the same “parenting,” can turn out very, very different. And the same is true about how two youngsters from the same family adapt to T1D - same gene pool, same parenting, but often very different responses to the challenges of T1D,
I’m not going to tell you “everything will be fine.” I hope it will, but who knows. And, for now, I won’t even attempt to offer any “sage advice.” Seems to me the six of you deserve the opportunity to scream at the top of your lungs, “Dawg! This is absolutely no fun!” Eventually, after the initial shock has worn off, as a family you will begin to function similar to how you have in the past. And you’ll begin to have fun again. It can be done.
For now, focus on getting your son “up to speed,” and please, don’t ever let yourself think that any one of you did anything to make this happen to your family. Sometimes it just happens.
I wish all six of you the very best.
People saying those awful things to you clearly have no idea how difficult it is. All I can say is that I’m so sorry and you’re not alone. I’ve had Type 1 since age 10, and it wasn’t any easier on my parents than if I had been diagnosed at 4…in fact, it was probably harder, because they had to trust me to take care of things on my own when I was apart from them.
My parents and I kept charts of my blood sugars in the early years and I would fill them out every day when I got home from school with the data from my meter. Having everything on paper for us to look at together did make things easier, and it kept me accountable. If you’re able to pursue Dexcom, I would encourage it; I’m sure it would be helpful for a parent, since your kids could share their blood sugar information with you easily.
I think the hardest part of this can be the emotional aspect at times. You are clearly a wonderful, attentive parent, and it’s obvious that you are doing everything you can to help your children. If you need some time to be angry and sad, I would urge you to take it, but please be assured that your children have great lives ahead of them, with or without type 1. They’re so young, and my endocrinologist constantly talks about a cure in his lifetime, so who knows what incredible innovations lie ahead for your kids?
In the meantime, know that there are so many people eager to help you and your family. I’m thinking of you and wish you all the best.
Hi Andrea @DJAdgieB, first let me offer you a Warm Welcome to TypeOneNation Forum!
I feel for you having now having to work with two children with diabetes and also emphasize with what @BillHavins said about all your children needing slightly different parenting - I grew up with six siblings and now in retrospect I can see, and my mother confirmed in her latter years, that although each of us was loved and received the same care that they [father and mother] customized approach to each as an individual - that will definitely apply to how you guide your children who have been already diagnosed with diabetes and your two other children when they are diagnosed.
(Note that T1D is not generally “inherited” and usually does NOT run in families as does some of the lifestyle forms of diabetes. M.O.D.Y. is a genetically influenced form of diabetes often diagnosed as T1D and could affect all your children - it might be advantageous to discuss this with the treating endocrinologist and check to see if the particular gene is present in your other children. MODY & T1D are managed in similar fashion.)
I’m assuming that you are well experienced now and understand that effective diabetes management is balancing food intake, activity and insulin, so in the guidance you provide your eleven year old son I suspect that a primary emphasis will be monitoring activity and learning how to adjust insulin doses to compensate - this won’t be easy. Before the dust settles, I suggest that you use the “search” feature on this page and look at the many postings on “exercise”. I have always led an active life and still, after using insulin for 60+ years, get caught with “lows” four to eight hours after extended, above usual, activity.
I am not a medical care professional; my suggestions and observations are based on my personal, long-time experience.
I do understand the frustration and the worry that can come with having two children with type one diabetes…and the worry of your other children possibly being diagnosed at some point. I would not let the possibility of them being diagnosed worry you too much. You will see the signs whether you want to our not. I know all too well.
I have three children all of whom have type one diabetes. They are all ten years apart and my oldest was diagnosed first… at age 17… Then my youngest was diagnosed at age 16mos but looking back he had the signs much longer. And then my middle child who is also asthmatic with severe allergies was diagnosed at when she was 12…almost 13.
So I absolutely feel your frustration and yes all my children are so different in how they handle their diabetes and how food and other factors affect their sugar levels.
It is definitely nothing you have done and on the contrary. You are exactly who your children need …you will make their lives easier and teach them to be healthy , happy, and help them to understand their feelings which can make them feel like they are on a rollercoaster ride sometimes.
I will keep you in my thoughts and prayers of that’s OK. Just remember to have fun and enjoy your children while finding your new normal.
Ugh- those comments! People do NOT know what to say! I’m so sorry- I get pretty tired of the dismissive comments. Just know those of us here understand… the unrelenting, unpredictable nature of this world. I, too have an 11 yr old (now 12)diagnosed this year. Sure, he can do a lot but throw puberty and middle school age in there and there is nothing easy about it! You’re a great mom and we just have to take it one day, one hour at a time. Blessings!
Hi there. I had never heard of MODY. I did some reading about it after reading your post. If I am understanding correctly, patients with MODY lack markers of autoimmunity. Both of my children have the markers. Or does this not matter?
Andrea, I really don’t know full details about the markers. If I had read this last night I could have asked a research person that question this morning.
At our JDRF OneWalk this morning there was an information booth sponsored by the University of South Florida doing the “TrialNet” screening.
TrialNet is a program attempting to identify markers in people, usually family of T1D, in an attempt to predict diabetes onset and for ways to prevent people from developing diabetes. My explanation here is very crude and I may not be stating this properly. Sorry if I messed up the description.
We actually participated in TrialNet. And I now strongly urge people NOT to participate in their study. First off, I think it’s not accurate. Second, I think they do not do a good job of explaining negative results to families. They give families a false sense of security. These opinions are based on my own experience - my son being diagnosed T1D only a few months after a negative TrialNet result. His A1C was over 14, meaning that very likely he had T1D at the time of the TrialNet test. Regardless of their test being accurate or not, they simply send a letter basically saying you’re all good - no T1D here. If one of those families is diagnosed after that, it’s not fair to add one more surprise to their plate with all that they already have ahead of them with T1D.
I am soooooo sorry…I only have two sons and after I diagnose my little one at age 23 months my dear is always that the older one might one day have it.
As for what people say… Don’t listen to them… I am a pediatrician and when I diagnose my little one everybody will tell my that at least I was a Dr so it was easier for me… It was not, at all. It’s never easy. The only thing that I can say is, you all will find a balance. Breath deep any take five every time that you need it. And look for help and support for you and your family as you are doing now.
It is hard!!! I have five kids close in age and one is type 1. I am constantly checking the other kids when they show any signs of diabetes. No matter what a “pro” you are, it is tough and is a 24 hour a day job. Best of luck to you!!! You can do this!
Hopefully you have read about the prevention study at grassrootshealth.net/t1d. We are actively recruiting, and the “cocktail” of high dose Omega-3 fatty acids and Vitamin D came from my friends at JDRF! You can read our story at www.preventt1d.org. We had a wonderful prevention conference on 26 April at the DRI in Miami. It is certainly worth a try and it is safe and affordable and efficacious.
T1D is hard for everyone and at any age. My daughter was diagnosed at 10 (she’s now 13) so I can appreciate at least some of the challenges trying to deal with hormones, independence, and peer pressure. What are you finding to be the biggest challenges? For us, one of the hardest has been how to give her some independence while still keeping her safe. Socially one of the things that has been great is meeting other T1Ds. My daughter loves T1D summer camps and she keeps in touch with some camp friends all year - it’s nice to have someone who really understands. Happy to talk more. It sounds like you have the medical part under control but it’s so much more than just the medical piece to deal with…
Just want to appreciate that line “at least you’re a Dr”
I’m an RN and that seems to be everyone’s go to line for me…”at least you’re a nurse”…I’ve decided what I’ve learned is when speaking to ANYONE in crisis or grief to never start a sentence with “at least…”