Parents of T1D

Hello, I’m new to this forum and was looking for a parenting kids with T1D group. Is there a space in here for parents? My son was diagnosed 8 months ago at age 14. He is having a hard time and I’m looking for support for him and for me.

hello @Lburg86 Linda Welcome to Type One Nation. Yes of course there is room for parents and caregivers, we have parents of children with T1 here.

My son does not have diabetes but I do, and have had T1 since 13 years old but that was a long time ago. The first year can be very tough with all of the physical and emotional changes you have to go through. Heck even learning the new language of basal, bolus, carb ratios, sensitivity - it’s enough stress for anyone to go through.

That first year, especially when you were previously an immortal, is very hard for a 14 year old to get his head around. For me, my parents were always able to fix everything… now, at diagnosis, when I need help the most, they all looked me with crying eyes and said “there’s nothing we can do”. it is a downright trauma when this happens and all sorts of things can come up for both you and your son.

We are here to help. What kind of difficulties? hope you have access to a medical team and we have thousands of years of experience here dealing with diabetes.

Joe

Hello and thanks for the reply. By difficulties I mean his whole attitude has taken a nose dive. I love the way you use the “immortal” statement because what I’m finding is that being diagnosed at his age comes with a very different set of challenges. He was used to eating as he pleased for 14 years. Now he has developed a taste for sugar and sweets that he has to fight every single minute of every single day. At first he was very under weight so he was relieved when they told him he could still have icecream and cookies and he just had to calculate the carbs and bolis for it.

Well here we are 8 months later and we still can’t get his numbers under control because his appetite is so huge and his quest for sugar is endless and has no bounds. I hate being the food police but I have to be. That causes him to hide things and eat in secret but I still know because his level shoots up to the 400s I try really hard to give him the choices and he knows the consequences but I’m really worried about his vision. It was bad before diagnosed and now staying so high all the time I’m worried he will go blind. I try to let him have his chosen sweets with some limits because I’m not trying to take over his life at a time when he is supposed to be exercising more independence.

He is struggling in school more than ever now too. So that just compounds the problems and issues. I feel like I’m hounding him 24/7 about getting his level under control but it’s not working because he isn’t interested in putting forth much effort. Not for school or for his T1D. I try and help him find healthier snack/meal alternatives but he either doesn’t like it or eats way too much of it like cheese and nuts.

We talk a lot and he recently told me he just has no motivation. I don’t know how to help him. I can’t just let it go because this is his health at stake. He recently got on the omnipod and at first he was all excited but he quickly realized it’s not just plug and play and all fixed. It requires effort and trouble shooting. He gets so mad at himself when his levels go so high and we seem to be pouring insulin into him but his level doesn’t budge. It’s then that he just says what’s the point it will never be stable. He has to change out the pod every 24-36 hours because he requires so much insulin. So he feels like he’s failing T1D and at school too.

That’s just the short version of a very long 8 months.

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Hi Linda @Lburg86, I can relate to what your son is going through and his trying to deal with what appears to be a new way of life. M<ore than six decades later, I can remember trying, often unsuccessfully, to stealing and seeking foods that “I shouldn’t eat”. But in many ways, with the now available technology [a blood sugar test used to take 2 - 3 days to get the result] and thinking about GOOD diabetes management, many of those “no, no’s” have gone away. A good registered diabetes educator, a CDE, could guide your son in food selections, beneficial activity, and help him master how to balance his activity and food with proper insulin management. My words may make it sound simple, but it does take lots and lots of work; the first thing your son needs to have in his thoughts is that he is in charge and that he CAN DO anything he wants even though he is dealing with diabetes.

No, we don’t have a dedicated parent’s section here, nor a dedicated teen section, but there are many teens and parents here working together - probably the best format because we can all learn from one-another and let others learn from our shared experience. Even though I’m in my seventh decade living wonderfully with diabetes, rarely does a weel go by that I do not learn something here; the monthly meetings I attend are mostly populated by families of persons living with diabetes and the sharing is helpful for me.

Hi @Lburg86 Linda,

let me offer this: when your entire world revolves around 14 year old hormones and quite severe peer issues (mostly about finding your own and independence while fitting in with the peer “normal”) getting told you have an incurable disease could put ANYONE into a depression. I was so shocked when I was diagnosed I would spend a majority of my waking hours trying to either place blame, or trying to wake up from a nightmare that would never end. To say these 8 months were terrifying to your son is a gross understatement.

Like any loss, the loss of good health is traumatic, and is followed by the typical stages of grief. No one gets to take a shortcut. No one is “fine” after diagnosis no matter what a person says or does, they are not fine. All of these feelings and, hopefully, full acceptance of what the new normal is, takes time. Sometimes it takes therapy, but even with the best help it still takes time.

high blood sugar sucks. you do not know what it feels like. You (hopefully) will never know. High blood sugar is a vacuum of energy that closely resembles a flu that never goes away. As bad as a high is, Low blood sugar sucks even more. Lows are easier to imagine if you don’t have diabetes, it is pretty close to the worst panic attack you have ever experienced, closely coupled with loss of judgement and reason.

as far as sugars regulated. I am on year 41 of treating Type 1 diabetes. I consider myself a insulin Ninja and expert in blood sugar control, but my 90 day max and min are currently 394 mg/dl and 39 mg/dl respectively. There is no such thing as regulated with type 1 diabetes. There’s feeling crappy and “good enough”.

yes pumping is more intensive than shots. yes it requires more testing, more intervention, more thinking… if someone on your medical team said otherwise I would terminate their employment. For many of us, pumping is the best of a bad situation. I’d never tell anyone pumping is “great” I tell them it sucks less than shots for me…

Isolation is not the best plan. there aren’t that many people with T1 and for goodness sake, everyone with T2 will have opinions which will not be entirely true for T1. Perhaps there is a summer camp near you, where his peers all have T1 and so that element of not fitting in will be relieved for a little while.

in my opinion, you have to get your head on straight first and foremost, then control becomes more tolerable and school becomes…well…as school as it ever was. We’ve all been there. We’ve all pleaded with the heavens to wake up from this, and we’ve all had to come to a new understanding. This is a painful and slow process. Please check back in and I hope to hear from you regularly.

Joe

Thank you for all the replies of support. I feel less misunderstood and alone. I was so frustrated yesterday when I came to work after missing a day due to my son being extra sick. So I told a lady at work about my sons T1D and she acted like she understood and said her son has it as well. I was so relieved to think oh wow she will get it then. So then she followed up with “oh but he’s better now because he changed his diet” :weary: that’s when I just quickly ended the conversation because I could tell she didn’t get it at all. All of a sudden she had an entire family that was “all better” from changing their diet as if she was giving me advice that will work for my son
:face_with_raised_eyebrow:

So yesterday afternoon was better. He has found an actual friend at school with T1D and they both wear the omnipod. I don’t know how much he shares with him or the other way round but I was very happy to hear it and he seemed relieved.

I think my son doesn’t understand that his feeling sick all the time is from high blood sugar because we can’t get it down long enough for him to know what “normal”
Feels like. I also don’t think he has grasped the concept that there is no Finding normal with this. It’s a constant battle forever.

Hi Linda @Lburg86! Welcome to TypeOneNation–I’m so glad you found us. It seems like Dennis and Joe have already offered some great advice, as they always do, but I’d like to offer my perspective as well.
I’m 17 years old and I’ve had T1D since I was 7, so I have a pretty good idea of what your son is feeling. The way you described his changing attitude sounds like a pretty classic case of sheer denial: the feeling that it’s easier to ignore his condition than accept that his whole life has changed permanently. Plenty of PWD experience burnout at some point in their lives, especially in their teenage years. Being diagnosed at 14 would be super hard for anyone, and it’s normal for him to struggle with it. That said, I do have a few pieces of advice.
First–and I see you’ve already started doing this–help him find friends with T1D who he can relate to. In a time of his life that’s all about trying to fit in with his peers, he suddenly feels alone and that can be a very scary experience. I would encourage him to get a TypeOneNation account if that’s something that interests him, so he can ask questions and just connect with other PWD. I would also recommend that he join a group with other teens with T1–if there’s not such a group in your area, I would love to add him to one of my group chats on Snapchat. It’s been a great way for me to make friends with T1D and share my struggles and triumphs with people who know firsthand what I’m going through; I’m sure he would benefit from it as well.
If he continues to have difficulty adjusting to his diagnosis, be patient. Don’t punish him for making mistakes or letting his levels go high–I know you’re scared for him and it’s easy for that to come across as frustration, but from what you said, it sounds like he’s scared of making mistakes and that’s why he’s decided to stop trying. Everyone, no matter when they were diagnosed, has times when their blood sugar goes out of control. That’s okay. He’s going to make mistakes, and so are you. Help him to learn from them and move on. Never let him feel like he’s “failing” T1D, because that kind of self-blame can be internalized super easily (yes, I’m speaking from experience here) and it’ll only compound the burnout that he’s already experiencing.
I would recommend talking to his endo and sharing what’s been going on. Your son might benefit from some counseling to help him understand his “new normal” and accept the way that his life has changed. That said, make sure that he feels comfortable talking to you as well. He’s feeling incredibly isolated right now because you, and most people in his life, have never experienced the things that he’s feeling. Make it clear to him that you’re here to support him and help him adjust to his condition.
This is a long process; it’s not going to happen overnight, and sometimes you might have to take a few steps back before you can move forward. That’s ok! Your son will be able to adapt to his condition and live a successful life with it.
Please feel free to pm me if you or your son have any questions :slightly_smiling_face:

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Hi Linda,

Do you use Facebook? If so, I highly recommend joining the T1D Mod Squad group. It’s for parents of types 1s where you are free to ask and share any concerns. It is a great community of over 15,000 parents and you will feel right at home, I assure you.

I have a FB but I don’t really use it but I will def check that group out. Thanks!

3 years ago, my 7-year-old was diagnosed after going into DKA. At the hospital they said just thank god he got it early, because teenagers are the WORST. 4 days later, our 13-year-old was diagnosed. He also has struggled in school after spending most of his childhood at a top charter school getting straight A’s, to now barely passing. Unfortunately, I have no advice, because we haven’t yet figured out a way out of this whole, all I can offer is to let you know that your child is not unique. Ours, however, refused to let ANYONE at school know he has T1D, so if yours has found a friend he can even just vent to, you are one up on us.

Wow you had both your kids diagnosed within that short time frame? That’s a lot to take on. I feel for you. Now you have it from both perspectives. How does the older and younger child interact with one another in dealing with this. I can’t even imagine what that would be like.

I feel like it’s insane to have wished my son was diagnosed at a younger age but I find myself imagining how much easier it would be to get a handle on it if he was 5 rather than 15. I look back at my 5 year old baby and would wish this diagnosed on him but at 15 it’s just a very different set of circumstances. It’s very hard to get a grasp on his daily food intake where as at 5 I was in control of what he was eating. Having had free reign on food up until the age of 14 has made it super hard to stop the huge sugar intake. He isn’t an over weight kid and never has been. But sugar is in everything. And at 15 he likes to eat a lot. Heck I even looked at sugar free options and the carbs were the same or higher. He is struggling with independence but now he needs me more than ever for guidance and help. I have to wake him many nights. It’s either he fell asleep and let his phone die and I’m not getting dexcom readings or he has a low or he has a high. With the omnipod now I can dose him while he sleeps so that has helped some with that issue.

The day he came home and told me about the kid in his class wearing the omnipod it was like he had this huge sense of relief. He has mentioned how this kid is on the wrestling team at school and the diet he has to be on to make the weigh in. So I feel like they are talking a little. He hasn’t mentioned much about it recently and he refuses to do any camps. Which is another thing that I feel like would have been good for him and I could have made him go when he was younger. I’m in no way trying to make it seem that those with younger kids dealing with this have it easy. Because again at any age it’s a heart wrenching diagnoses. I imagine what it actually would have been like with my crazy active 5 year old boy and the worry about school and friends that are too young to understand. So really I go back to I wouldn’t wish this on anyone at any age. I feel guilty even thinking that it would have been better at an earlier age. But 15 is a tough time without T1D.

Hi @Lburg86. I saw your mention of your son finding a friend at school with diabetes - hopefully they will be able to encourage each other. It occurred to me that your son could go to the school nurse and ask if there are other students with diabetes he could connect with. I’m pretty sure she would not be allowed to give him their bashes but could share his with others who are willing. Some people “wear their diabetes on their sleeve” - or their pump out in the open as it were; while others hide it - so there could be more there that he could connect with. Of course you could do the legwork and talk to the nurse in his behalf, but I can imagine your teen’s reaction. So just suggest it and hopefully he will follow up on his own. Who knows - his new friends may connect him with others as well.

Don’t feel bad about wishing for an earlier age diagnosis. I was diagnosed at age 3 so by the time I reached my teens I was fairly well adjusted. We didn’t have CGMS, BG meters or links back then, and we tested or urine for sugar. I took one shot a day - in the morning - until college, so things were different but I was always pretty open about my diabetes.
I spent a few summers at diabetes camp and it was great - but once you’re 12 or so the idea of “summer camp” can sound a bit juvenile. I almost wish they could find another name that would make it more attractive for older kids.
If I could suggest a bit of advance planning/incentive: despite Uber, Lyft, and Mom & Dad’s Taxi Service, I think most teens do look forward to the independence of getting their driver’s license. In most places a medical review is required for people with chronic conditions, with the doctor attesting that the patient is responsible in managing their condition and documenting any emergencies, etc. Although your son is off to an understandably rough start, the effort he puts into figuring things out and turning them around will factor into his doctor’s evaluation down the road.

How do you create your own thread I dont want to bombard someone else’s? I am new so I apologize for barging in.

Click on forums tab and under that section just a bit is a purple bar that says create new topic.

What helped us the most and enabled us to get a good understanding and control was listening to the Juicebox Podcast. The interviews give you insight into life with T1D as a parent and a PWD. You can soak in the terms and stories and experiences over time.

I highly recommend the Pro Tip series starting on episode 210 and scattered every few episodes after. These will turbo charge your education. The medical system doesn’t lend itself to meeting your needs. Appointments aren’t long enough or frequent enough up front and there is no education program to go through on an ongoing basis for many. The podcast will help close that gap.

You should both listen. Both join the Facebook group for the podcast as well.

After you feel less in a fog, then listen to episode 227, diabetes concierge. It’s about a DIY closed loop system that your son may love and be a big help. Only if you are up for it.

PM me if you need a pep talk and some orientation to these tools.

Hi, Linda. You stated lack of motivation and depression. I highly recommend you get him to a psychiatrist who specializes in patients with chronic diseases. For diabetics, the teen years are the most susceptible to depression. See if his endocrinologist knows a good psyche in that field.

A thought occurs to me, if he isn’t on a pump, or even if he is. Does he tend to re-use the same site, or not move very far from the previous to the new? It’s crucial for the new site to stay a minimum of 3 inches from the previous site if he’s on a pump, and 1 inch if taking injections. Otherwise the site builds up insulin resistance and over time it becomes useless as a viable injection site. That means his insulin will not make it through the blood to the cells to “open the door” of the cell to let in the glucose. When that happens, the glucose stays in the blood and the level skyrockets.