16month old Type 1

My son is 16months old and has been diagnosed with Type 1, he went in Dka, was in ICU and now home after two weeks.
I’m extremely stressed would appreciate any advice/help.

Hi @Emaan . Welcome to the forum. I’ve seen a few posts from parents whose children were diagnosed as infants. I myself was diagnosed at the age of 3 and will have raved 60 years on insulin next year! I know it’s tough - and because I’m not a parent I can’t appreciate what it’s like for you as a mom. But now we have a variety of insulins, and technology that can help us manage and live healthy lives.
A couple of suggestions for you:
You may have been assigned an endocrinologist for your son. Make sure they are familiar with Type 1 specifically. Despite the fact that diabetes is growing more prevalent, “ours” is still only a small percentage - most have Type 2 and many doctors aren’t familiar with Type 1.
Expect a steep learning curve. It’s going to be frustrating but that’s to be expected. You’re going to want to learn all you can do you can do all you can to keep him safe and well, but it’s a process so don’t be hard on yourself.
I don’t know if all offices have them, but it’s very helpful if your endo’s office has a nurse educator on staff (there’s a new term now but I can’t recall what it is - the old term has been ingrained in my brain for decades). While the doctor will guide his treatment and teach you some, the nurse educator’s role gives them the time to devote to it.
I highly recommend you check out the book Think Like a Pancreas by Gary Scheiner. He has diabetes and works in the field so has a unique personal perspective that is particularly helpful, and I think you will find it a great supplement to your learning.
Regarding technology there are CGMs - continuous glucose monitors: Dexcom and Freestyle are the key players. Minimed had one but it does not work apart from its pump.
And there are pumps; Tandem, Minimed and Omnipod. Pumps are a wonderful tool and some people literally cannot manage without them. But many people do well on injections. I don’t know if there is a minimum age for pumps but at some point your doctor will discuss them with you. Just know that a pump is not a magical device that will make everything better on its own. It is the next best thing to a working pancreas, but there is work and commitment involved, not to mention financial investment (and typically a 4 year commitment). I think reading Think Like a Pancreas will help you formulate questions to ask in that discussion when the time comes. A pump is a marvelous tool - particularly when looped into a CGM to help with adjustments. Just make sure you have a good understanding of what it does, what it does not do, and the commitment involved.
I think I may be starting to overwhelm you so I’m going to stop here. As you read through the forum I hope you will find that parents like yourself who started out scared and clueless, over time developed the confidence to manage their child’s condition and help them learn to do the same. It may not feel like it now but hopefully in time you will feel the same way.
All the best to you, your son and your family in this new journey.

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Hello @Emaan welcome to Type One Nation. The first year will be filled with learning a new language, new technology and medicine, and it can be overwhelming. I hope you have a pediatric endocrinologist and all the support you need.

The book “Think Like a Pancreas “ is cheap and filled with good information.

It will take some time to learn all of this. Go easy on yourself. Blood sugar is hard to control, 40+ years experience here and my blood sugar is not level, not steady, not easy to control - and it will never be. Experience is how I manage.

If you have specific questions you might get more specific feedback, but I hope you come here often and ask as much as you need to. :four_leaf_clover:

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Thank you so much for this response, and info. We do have a pediatric endocrinologist, she seems to be very popular in our area she has been around a long time. However since we are out of the hospital I feel like a lot of the times I have to use my own judgement to make decisions, I understand that they can’t guide me every step of the way. But this is so new to me I didn’t even know what diabetes is before my son was diagnosed. Honestly I have no idea how he got it even tho nobody in my or my husband’s family has it. But at this point im a little over crying and asking why he got it. I want to handle this. I want to understand every bit of it to give him close to a normal life.

Excellent to hear that you have a pediatric endo - not everyone is referred to a doctor with such special training. I don’t know if your son is old enough for a CGM - if not I would consider it as soon as he is. Seeing your numbers almost in the moment, and bring able to see your body’s responses, is a game changer - not to mention not having to do multiple sticks per day. And CGMS can share the numbers with you so you’ll know how you’re child is doing if you’re in another room or across town.
Hopefully you will be attending some diabetes education classes or individual sessions with an educator: you’ll learn about diabetes and the tools to manage, so you can build your confidence. Of course the forum is here if you have questions, but please remember this is for general guidance and not medical advice: forum members often give suggestions on things to try for certain problems, but you need to be able to manage on your own before trying them - if not, you should discuss them with your doctor. We’re here to help and offer support, but medical advice must come from your physician.

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Type 1 doesn’t usually run in families. For example, I’m the only one in my fam for 3 generations. Yes eventually you will make all the decisions, this is a self managed disease. There’s no way a doctor can advise every situation you will be in. You’re going to be an expert on 13-14 months, I promise you.

I know it’s probably a little early for this due to your child’s age, when he gets a little older I would recommend to send him to diabetes summer camp. My son went to Camp Sweeney in Texas. It was amazing. He learned so much and got to meet and socialize with other kids that have diabetes like him. If you can’t send him there, hopefully there is one in your area. I know there is one near Seattle too and probably many more.

At least for Camp Sweeney, tuition was covered by insurance.

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Wow. This sounds like such a great idea. Yes he is so young but I feel like when he is growing up I don’t want him to feel different or like the only one. Definitely sounds like something I would look into. Please let me know if there’s any camp you know of close to New York. Thanks

I spent a couple of summers at Camp Glyndon in MD and had a blast.
@Emaan at the top of the page there’s a tab for resources. You might find info about camps there when you’re ready, and there may be links to local resources in your area so you might connect “live and in person” with other parents of kids with Type1.

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Hi, @Emaan, and welcome. I defer to @joe and @wadawabbit on lots of advice, so what I have left is encouragement. Like them and others here I have had Type 1 “forever”, since 1st grade,and diabetes knowledge, especially about raising T1 kids, has come such a VERY long way. My Mom, who was generally allergic to any knowledge that was medical, had to start out boiling my syringes, and getting me to test the urine in my pee was, well. Straight vertical uphill battle. Be so glad you don’t have to do that!! So now you will have better feedback on blood sugars, and an easier time delivering insulin. That much less to be stressed about.

Back then, I - as was, she says, Sonia Sotomayor (and look where SHE is now) - was told that I could expect not to live past the age of 40. Luckily for Sonia, her mother was a nurse and crossed that doctor off the list after giving him what-for. I wish. We just accepted the new Best By Date as a given and waited it out before ever getting medical advice from another doctor (boondocks, aged hick doctor who could probably remember when insulin was discovered).

Obviously, at going-on-59 years diabetic, I’ve outlived that doctor’s predictions despite my mother’s aversion to all things medical and despite the diabetes dark ages I grew up in.

Your son will probably live to see even bigger strides in treatment than I, and @wadawabbit and some others here, have (your son will live, it’s which strides will happen that’s the question).

And in the support and stress detox vein. I was told decades ago that the Chinese had a saying: “No disease, short life. One disease, long life.” It’s gotten me through some emotionally hard times (“I wish I could do and eat anything like other people”). Given a life in which your son accepts that diabetes is his norm and starting point, and there’s just things to do to take care of it, then he will live healthy. As he grows, seek out the diabetic football players, rock stars, and others (they’re out there), diabetics in all walks of life to remind you both that anything is possible.

OK, one more. I’m sure everyone around you is telling you that you need to destress for your son’s sake and “here’s how to do it”. Maybe some of those might work - and some won’t. Destress the way that works for you. The more you do, the less your son picks up on the stress and assumes your stress is all his fault. It’s not, of course, it’s the fault of the disease, but he won’t be able to distinguish that nor articulate things like that for years to come, so just let him know that you love him and when you’re frustrated it’s because you want the diabetes to work out to make him feel as good as possible, but it’s not his fault he’s diabetic. GOD I wish I had been told that. I grew up assuming that my little sister was by far the preferred daughter and I was a burden, even when I brought home straight A’s, even when I ran around the neighborhood like all the other kids, even when I helped in the kitchen. So just make sure he knows the difference between stressing over diabetes management and stressing about anything about him personally (driving like a 16-year-old maniac). His diabetes was NOT his fault.

Eek. Sorry. Soapbox.

You came here seeking living-with-it advice, and for that alone, I lay odds on your success.

Now breath in through your nose, out slowly through your mouth…repeat… :slight_smile:

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I am glad to see you coming to this forum, as a parent of a T1D son diagnosed at age 15, it has been very helpful to me. There are so many caring, knowledgeable and experienced people here, you will find a lot of help and comfort. As a parent, it is really hard, but as many say, it does get easier. And, I want you to know that your son can grow up and have a normal life. My son just graduated from high school and is off to college, and so far, managing his diabetes well.
My brother has 2 sons with diabetes, and one son has 2 daughters with T1D. The youngest was diagnosed quite young. Just as a point of information, the youngest (now 7) has just been diagnosed with Celiac disease, so they are hoping this may help explain their many difficulties managing her T1D. It is important to be pro-active and ask a lot of questions. This forum is a great place for information.

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I can’t tell how grateful I am for everyone here who are taking the time out to reply to my post and share their story. Honestly its the most encouraging thing Ive found after his diagnosis. I feel depressed, I come on here and I feel heard and not alone. So thank you so much everyone for the support. My son’s schedule is what consumes me day n night, i still have a lot of questions concerns which I will be sharing on here.

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If it helps at all - no one wants to have a medical condition, and especially not for their child. However, diabetes is one that is primarily managed at home, under our own control, rather than having our care administered in a hospital or other medical setting. His beauty practices such as “smart eating,” exercise, our medication of course, stress management - all things that are good for everyone - are keys to living will and long with diabetes.
There are a number of celebrities - actors, pro athletes, musicians, a Supreme Court Justice, and even a professional race car driver who live with diabetes. Check online. Hopefully they will give you inspiration and hope.

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Emaan, sending you a big hug from California and lots of support. My son is 8, diagnosed at 4 years old. I also was very depressed at diagnosis and still go through bouts of severe overwhelm and exhaustion. My highest recommendation is to create yourself a support system of moms going through the same thing in your area. I did that my attending JDRF events, DYF events (Diabetes Youth Families), and posting in my neighborhood for help. Using a Type 1 Babysitter is also a god send. Is your baby on a Dexcom G6? That will save your life. I hope that you can find family support and resources to help you get the basics even sleep and a massage once in a while.

It took me a year to let go of “what did I do for him to get this.” It’s very normal for us humans to try to rationalize it all. It’s an autoimmune disease and that’s it.

Your child will feel different but creating a support system and making sure they are open at the very beginning of school makes all the difference.

Reading literature, attending JDRF galas, and connecting with other type 1 moms has been my saving Grace. We also attend family diabetes camps which is tremendously helpful. Lots of validation and crying but it’s so therapeutic.

Continue to reach out and please please please know you are not alone. This is a complicated disease that takes daily effort but we are in this together ! Sending you a huge comforting hug. I’m so sorry you’re going through this and I’m so sorry your baby had to be hospitalized for 2 weeks. My son was also in the ICU on diagnosis and it was very depressing especially as I had a 4 week old at the time. I went through depression as well. Hang in there.

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Double ditto on @DDrumminMan’s recommendation for diabetes summer camp when you are ready. Holy cow, all the things that happened in summer camp! Even just learning that other kids gave insulin differently than I was told to, even that some of them used different insulin was a revelation. Astonishing.

I grew up in rural upstate New York, but went to Camp Banting, north of Ottawa, Canada in the late 60s. I guess I was 10, 11, 12? And there were kids there younger than me.

Everything was a revelation, but some of them were that they all sang a different national anthem!!! :smiley: , and different words to “This Land Is My Land”. Mom and Daddy did not prepare me for that!

And from my protected childhood I was transplanted into an environment where we could win an award for swimming all the way across the Ottawa River. (Kids who’d done it reported that the river was actually quite shallow in places, and you could kind of walk on your hands while “doggy paddling”.) There were other physical fitness awards, but that was the ultimate. But back home I wasn’t allowed to participate in gym class. Revelation.

Highly recommended. But ask how they treat lows. Way back then in the 1960s in Canada well north of Ottawa (read: I don’t know how current they were even then), at night we might be pinned down on our bunkbeds and have Karo syrup poured down our gullets in large quantities. I DO trust that they’ve changed their methodology in the last 55 years, but just ask about it.