My son, Colin, is 15. He was just diagnosed at the very end of Jan 2020. At first, he handled things amazingly. But it didn’t take long for that to all go down hill. We were told at first that it was most likely type 2. Then a few weeks later, we got the bombshell that it was type 1. Things escalated in a down hill fashion after that. He also has adhd, anxiety and anger issues. I’ve talked to him every way I can think of, so has his therapist, his social worker at school, others at his school but the days kept getting worse with his behavior and his anger. I know that he’s angry at having this. And I get it. It sucks. But I don’t know how to reach him. His behavior got so bad that we even put him in an in patient thing at the hospital for kids and while things seemed to get better for that just over a week that he was there (aside from his diabetes care which was AWFUL to say the least and this was a hospital) they are going back to where they were and the stress is so unreal and I’m struggling so much in trying to deal with it. He just acts like he doesn’t care and I don’t know what to do. My worry, stress is so bad not to mention the neglect of my other kids since all this happened as I’ve been so focused on him and his management. Just feel like I’m failing all around as a mom at the moment. We are in Seymour CT and just wondered if there was anyone out there who could help or maybe had kids in his age group who’ve dealt with this and could get together. Idk. Thanks for listening. It’s been hard to feel so alone in this.
Hi Tara @dolphinlove and welcome to the TypeOneNation Forum! I do hope someone near you sees this and contacts you.
I don’t know where Seymour is located, but following is a link to JDRF Chapters that popped up when I entered Seymour on the jdrf.org page. It may be good if you called someone listed on this link. I know in my area, Florida, we have some very active JDRF Youth Group meetings.
Hi Tara, I’m so sorry to hear of the struggles you are all facing. T1D is such a tough diagnosis, especially with a 15 year old. He’s already had a taste of independence and wants to be like everyone else, plus there’s all the hormone/puberty stuff going on. My son was dx this past summer, 4 days before his 15th bday. Similar to your son, the first month or so seemed fine. Then he developed ongoing stomach issues that caused him to miss school, sports, social stuff, etc. After months of doctors visits, bloodwork, eliminating different foods and an endoscopy/colonoscopy, it turned out to be psychologically driven. Anti-anxiety medication and a therapist he connected with (who also had a chronic health condition and “got it”) made a huge difference. Not saying it’s easy now, but it has gotten much better. Getting there was a challenge, and my husband and I also felt (and still often feel) that we have failed in some way. I’m not sure how much I have to offer in the way of advice, but I’m happy to lend a supportive ear. Just send me a PM…
Hi Tara, and welcome to this forum. I am sorry to hear about how things are going right now as well as prior to the dx. Hearing about your son’s adhd, anxiety and other issues…this may not be just T1D but also some allergy and vitamin/mineral deficiencies that may be related to T1D. Certain things come to mind: 1) wheat sensitivity or celiac, which can cause serious gut dysfunction along with adhd and anxiety symptoms you described. 2) zinc and other mineral/vitamin deficiencies, caused by or related to some food allergies.
Children today are much more likely to have wheat sensitivities and/or celiac. And T1D is highly associated with both celiac and wheat sensitivity. Dr. Alessio Fasano (Harvard) is a great source to view on YouTube regarding this. So are Dr. William Davis (wheatbelly) and Dr. David Perlmutter (grainbrain). 2) Zinc deficiency and copper excess: unusual anger in children can often point to zinc deficiency and high copper status. Gut dysbiosis (imbalance of gut bacteria) and/or wheat sensitivity/celiac can lead to such imbalances due to malabsorption in the gut. Resolving these deficiencies has proven helpful in resolving anger. Please look into Dr. William Walsh, PhD on YouTube, who has worked with many children and adults with zinc/copper imbalances leading to anger. When there is a clear zinc deficiency (tested by lab), resolving the deficiency often eliminates anger/anxiety completely. The story is very encouraging. 3) Other vitamin and mineral imbalances are possible with T1D, so getting him checked for these may help get his body and mind back on track.
Consider starting with tests for celiac - specifically for gliadan and transglutaminase - as well as tests for zinc and copper, vitamin B6 and B12, and RBC magnesium. The ratio of copper to zinc, according to some experts (like Dr Bredesen of UCLA), should be close to 1:1. See where he stands on these, as he may be out of range. Try to get your son tested for celiac before you try eliminating wheat from his diet, because the lab tests require recent wheat exposure…assuming he doesn’t already avoid wheat.
As a T1D, I remember having issues with wheat before diagnosis. I wish I had stopped wheat then, but we knew so little about celiac and wheat sensitivity back then (34 years ago). Now there is more concern about an association between autoimmunity (all forms) and wheat consumption. Elmination of allergens like wheat can sometimes stop the troubling symptoms in the gut, body and brain, and can make it easier to control blood sugars.
Sometimes the body’s discomfort can affect and overwhelm the mind…so it can be worth exploring this while also helping him with counseling for this diagnosis. I had some counseling sessions myself after diagnosis and whenever I struggled. It helps - and it can be good for you and the whole family too. You and Colin will be doing much better soon!
All the best -
First of all Welcome!
Sound like your getting the Sh/& end of the stick. I know that it sucks right now for you. But something to think about. As bad as you’ve got it, your son has it just as bad. If not a little bit worse. He is going thru a lot right now. Does not excuse the behaviors he’s displaying!
Being T1D is not ever easy. Because of his age, diagnosis, peer pressure and host of other things he’s kinda loosing it right now.
This part is hard, he knows what he’s doing and that he’s wrong, but in some ways he’s getting away with it. You know him better than anyone, even him right now! Sometimes you have to just sit him down and talk to him. Not like a Mom, but like a friend or someone who cares. Be factual and honest. Present your side of the issues. Then ask for his side. Now you gotta be friend, Mom, person who cares all at one time. He’s listening. Hospital proved that. Might help if Dads there too. Again you know him best. He’s on an emotional, hormonal rollercoaster right now. It may help if he understands that your with him, but certain rules gotta be maintained. Like testing, injections, diet, behaviors etc.
it may help him to understand that life goes on, but he can’t keep on being a little … cause all he going to do is drive away anyone and everyone who’s not family. And that family can be driven away too! He has siblings, You, Husband that all care and are hurting too! Unfortunately he’s gotta grow up overnight. Like it or not it’s now life. He can go on acting out or buckle down and cope.
Now he also has to know your there for him if he needs you. Just ask and your there to help with advise, shoulder etc.
It’s gonna be tough no matter what you do or don’t do. However it may help if he knows that there are consequences to his actions that can be long lasting. Those consequences may not just be physically damaging, but interpersonally damaging as well.
Sometimes just being frank and honest with him, treating him like an adult, that he’s so desperately trying to be, yet, he’s still that little boy, needs to hear.
Hope something I’ve said helps. I know that for me, it helped me to hear it. I was much much older when I heard it, but it still helped to gain a perspective that I hadn’t thought of or even realized. Agin you know him better than anyone. But this might be a different approach than how you usually deal with him. It may hit home.
i was in your sons exact same shoes, just about 2 years ago. i wouldn’t want to say it gets easier as he gets older and as he’s had it longer. but for me at least it was honestly a long phase i went through. i know it will be hard for you to do but you just got to let him work it out internally with himself. he’s got to come to a place where he can just accept these things and sadly there’s nothing he can do to change this circumstance. it took me years to come to this acknowledgement . i felt the more my parents and adults pushed me and bugged me to do whats i was supposed to do, it just made it worse for me. i would recommend giving him his space but also keeping an eye out for him making sure he doses and what not. this anger and confusion and resentment isn’t a short term fix. and even if he talks to someone about it, its not going to change a whole lot until he’s found it in himself. type 1 doesn’t define you and he shouldn’t give up on his dreams just because he has something in his life he didn’t want. Aside from that i was also dealing with emotional issues and angry outbursts. those 2 things diabetes and emotional issues is a lot. and it takes a lot of hard work and acceptance to overcome those 2 things together. diabetes still gets to me and it probably always will. it’s important to remind him that it’s okay if he’s mad and hates it, but it’s also important to not let him sit in it too long.
i hope something i said helps or gives you any ideas about what you can do.
Young adults like to have control of things affecting their life. Trial and error allow for a great deal of education to be gained. When too many options are available there can be far more opportunities for confusion.
Food is life. With Colin create a list of, say a dozen, meals he likes that fit into his diet plan. Teach him to cook for himself. Preparing a good casserole, stir-fry, salad, or simple side dish will increase the chance that he will be interested in those foods when they get served. Even if it takes two days to cut all the vegetables and prepare a meal, it is an excellent idea to have him learn how to take care of his own needs. Being involved in their basic care also helps add to the control a young adult is feeling.
Carbohydrate counting is a skill. Adjusting boluses to fit: meals, activities, current emotional state, stress levels, even who is around for each meal takes practice.
By the time Colin is through his primary education years he will know more about how food reacts in the human system than most of his acquaintances. Knowledge is power and there are continuing to be new bits of data available to all Type 1 Diabetics as time passes.
Yes, the schooling system will still be teaching facts in history, math, and foreign languages while your son keeps needing to maintain focus on his well-being. Hopefully a school project will offer a passion that accepts a T1D without adding any excess concerns. The drama club and band boosted my spirits away from the restrictions felt by living as a teen diabetic.
The best advice I received, as a child, was
“You are going to have this condition all of your life. Either you learn to live with it happily to a ripe old age, or you fight with it and die of painful complications way too soon.”
Now I ask newly diagnosed Diabetics if they prefer to follow a few tolerable rules, to live a relatively normal life, or act like they don’t have diabetes and die young? Sure young adults do not often face the realities of death, but some have already lost someone to accidents, cancer, or something else and grasp the permanence of death. It cannot be avoided, but it certainly can be delayed.
If there is a close friend, do try to educate that individual on diabetic care. Having someone that Colin trust will be very helpful. This person needs to learn how to recognize symptoms of highs & lows, know how to do a fingertip blood test, administer a meal or high glucose bolus, soothe a temper when everyone else is eating dessert and the T1D friend has only an extra serving of green beans to call an indulgence. It can make a great difference having someone understand what you are going through. Knowledgeable friends are worth their weight in gold
Hi Tara! As a teen (same age as your son:)) I can definitely understand where he is coming from. I always get frustrated easily when I am told to express my feelings on being a diabetic and to take care of myself. I just like him have gotten (and still kinda am) in a phase that I don’t care, but he needs to take care of himself. He is WAYYYYY to young to have to worry about getting his health messed up by not taking care of himself. Relating to his anger outlashes, maybe he wants to be independent about this but at the same time needs guidance but won’t admit it. And even if that’s not the case mabye he doesn’t feel as free as he used to, especially (assuming he is about a freshman or sophomore in hs) being a high schooler. I’m sorry that he has to go through this but i know once he’s in control if it, he’ll rock! (And also with you being a parent you don’t have to stay strong for him 24/7 because in the end, everybody is taking his diagnosis differently.)
There’s a lot of good advice here, and I want to echo the suggestion to get a celiac screening done, if it hasn’t been done recently (I say “recently” because like diabetes, it can manifest at any time, so not having had it before doesn’t mean you’ll never get it — though there seems to be a gene that is a necessary precondition, so if you don’t have the gene, they think you’re in the clear).
Anyway, we have several family members with celiac, and there is no question gluten exposure messes with their brains and emotions just as much as it messes with their digestive systems. Google “Instant A**hole: Just Add Gluten” for a classic description, and scroll through the comments.
Hi Tara, It is tough with boys. I had to give the whole “why not you” and “there are so many worse things than diabetes” talks. Their uncle is autistic so they can see in the pecking order of things that could go wrong, diabetes is not at the top. Sometimes they need to be pulled out of their me-sphere. (too much sympathy can be bad depending on the person) Guys like to be in control and there is so much he can control. (What he eats, when he eats, ratios. That seems to comfort my guys. They get to spend their carbs how they like.
As for your other kids, it is good to rally the troops. The whole family is impacted. Set your environment up for success. It will make them healthier in the long run. There are things parents miss in the best of times. Put a quarter in the therapy jar and move on. The fact that you are aware that you have not been paying the same amount of attention means you probably have them covered.
I’ve dealt with this at his age , I’m only 17 right now almost 18 but there will be really bad years and then there might be a okay year . With everything going on right now I feel like the kids in our generation really are just lost and we all need someone. Sometimes I just feel so alone and everyone keeps leaving my life .
My son was 20 when he was diagnosed in Jan 2015 during his sophomore year in college. Looking forward to his 21st birthday and a continued growing independence, everything changed. T1D and everything it means is a hard reality. Our kids can Google it and see a lot of scary stuff. It starts with so much to learn, lifestyle changes, dreams that now may seem unattainable. It’s obstacles the newly diagnosed never contemplated having to deal with. This creates the feelings and reaction you describe in your son. My son experienced the same in his own way. How we coped and attacked was to build a support team around our son. We made sure there was an understanding with his brother and other close relatives, on how all of us were going to be ‘all in’ making changes to our lives and daily routines. For example, vacations were now going to include more eating in or restaurants that had carb information. We tried different endos until we found a good fit, we insisted on counseling, we learned how to help manage insurance company processes and his doctors. We studied technology to find the best (for him) management tools i.e. pump, CGM, glucose monitoring system. Thru JDRF, we found a fellow T1D who was about 10 years older that our son could speak with. They stayed in touch for a few months, and that was extremely helpful. We took the admin of insurance claims and appointments off his plate, so he could focus on disease management. We made sure he knew we were there for him and we weren’t giving up and neither was he. My wife didn’t badger him on his numbers or how he might be managing at any particular time, so she’s more of a safe haven for him to open up to. For me, I was on him about his numbers and management no different than expectations around grades when he was in school. Although, I tried to focus on the controllables and do it in a way that didn’t add stress (which I could have done better—still learning). Slowly our son started to make the climb out. He relearned how to eat, got back in the gym, built a career around how he wanted to manage T1D. It took 4-5 years to get to a really good place (although that’s different for everyone I’m sure). Mentally you have to be prepared for the ups and downs, the disease will change how it affects a person over time and they have to change with it. Our son didn’t have to sacrifice any of his dreams, but did have to work a lot harder to get there. It takes time and is a process. Hope the stories help and good luck.