My son is 19 years old and was diagnosed 11 months ago. Since being diagnosed his A1C went from a 10 to a 14. He hates this disease and wants nothing to do with it. We stopped letting him drive due to possibly hurting someone else. He doesn’t go to his Drs Apt and I can’t get him to take this disease serious. Any suggestions? Am I alone…please help!
Smmtc, I am so sorry that you are going through this with your son. I can't imagine what you are going through. I am the diabetic. But I will tell you this, nearly every diabetic goes through a period where they say "the hell with it". None of us wants to deal with this disease but ultimately we are left with little choice. Your son is 19 and there is still so much he wants to do and right now he just sees diabetes and something that just gets in the way. I have no easy answer for you. Wish I did. There are so many parents, spouses and significant others who deal with the same things you are dealing with. Check out the group of parents of kids with T1 http://www.tudiabetes.org/group/parentsofkidswithtype1 they might be able to help.
I am so sorry. He is going through a rebellious stage or "diabetes fatigue." I think everyone, myself included, gets so sick and tired of dealing with all of the nuances that this condition entails. Myself, I will NEVER like being Diabetic but even though I think it sucks I'm living a "normal" and healthy life because I've just accepted Diabetes as a part of it. He has to get to that sort of acceptance.
Honestly, aside from telling him the ramifications of such a decision (i.e. the complications that come from not controlling your blood sugar), there is not much you can do. The decision has to be his. And I feel terrible for not being able to offer a better a solution!
What's always worked for me was having hobbies. Even when they were not entirely productive (partying a lot, although I also learned how to play guitar, so it was not a complete wasted of time...), I wanted to keep my BG stable enough so I didn't kill everyone's buzz by passing out. It may also have helped that, in our circle, people passing out wasn't all that unusual so I was "just one of the gang" as opposed to "the guy who passes out!"
Since then, I've sort of kept it up, my "rough years" were when I was a bit older as I did ok but was very lazy and overshot a lot of insulin and gained weight. I started exercising after that, moderately at first and then sort of threw myself into it and, again, didn't want diabetes to stop me. Part of the reason I decided to try to improve my general health/ weight/ etc. was noticing some obits for guys my age, or even younger, w/ the JDRF listed for "donations". I'm very sorry your son is reacting that way to the challenge and hope that he can find some motivation!
In our community there are programs for kids with severe medical problems due to behavior ( Portland or). Ask your dr or a medical social worker about this kind of program. Also consider a summer camp for kids with type 1. Google will help you find one. Can you find him a type 1 young adult role model? He seems like he would be a good candidate for a mentor or buddy. Also in our area are psychologists who specialize in kids with t1d. Oregon health science university has one on their team and a nationally recognized program. Look them up and see who might be able to direct you to resources in your area. Good luck!
Along with Acidrock23's excellent comments I would add the following:
i was detected/diagnosed as type 2 in the 1980's and I too did not do enough to get the mess under control.
While not peddling reformation and other issues, ones life can be extended and improved if one gets on to this mess, finds a good team of doctors, dietitions, exercise, helpful web sites and other good folks to chat with.
I started to deal partly with it but finally cleaning up mess took delay of 30 years?, a stroke ( I was most fortuantely with a very limited - in place calcified stroke due to excess glucose) and spent last 4 years driving issues, proper eating skills/diet and sufficient exercise ( all recommended by acidrock23 and others). Unless one is in the Pine Box, My experience suggests it is never to late to make changes - but the earlier the better.
Fix it now, and one can have a long and excellent life that albiet has some extra dancing and inconvenience but does not necessarily limit one's life totatlly or seriously.
There are worst ways to go.
i pray your son gets some help, guidance and assistance to see the light at the end of the tunnel and learning the dance needed to facilitate that. His future really is in his hands.
My 16 yo son was diagnosed almost four years ago and he still goes through denial like you've described. Your experience is not uncommon. My son lives with my ex-wife (thankfully we get along very well). His mother and I handle these situations differently. As a point of understanding, perhaps it will help to know that he is trying to exercise control - not the kind of control you'd like, but control nonetheless. In addition, as a 19 yo, your son is likely responding to you (as an authority figure) with as much resistance as that reserved for the disease. In addition, my experience has revealed that scare tactics (in the form of trying to explain the long term health consequences) don't work. In fact, in many cases, my son can't be reasoned with. My ex-wife is especially skilled at managing the kind of situation you've described. One important and particularly effective tactic she's learned is not to over-react out of fear.
The A1C is important and reflective of blood glucose trends but it is hard to use as a tool day-to-day. If the day-to-day management improves, the A1C will likely improve. When in the moment, unless his sugar goes dangerously low (doesn't sound like that's a problem) or it goes so high that ketones become an issue, don't go crazy - be matter of fact, respectful, informed and prepared. Control issues driven by fear add to an already tense situation. How you react is important and it sets a standard for how he will eventually respond.
Hi Smmtc - I can imagine how frightening this is for you and your family - and especially your son!! My youngest son is now 18 - he was dx when he was 2. It is to be expected that your son will hate his D - the question is how to get him to want to feel better both physically and mentally (which means taking care of his condition). It is so hard to advise on a message board since none of us know the daily ins and outs and what you have tried in the past 11 months. SInce your son is a young man it is important to get him to see that D will not limit him in anyway - unless he let's it by not taking care of himself. I am sure he has told you that he has no interest in meeting other people his age with D - but I can't encourage you enough to get him to the Children With Diabetes conference in July in Orlando - not sure where you live but there are many people his age there and they all have to deal with the same issues as he does - sadly.
Is your son in school - working? what are his goals - has he changed his goals or abandoned his goals since his diagnoses? are his friends involved in helping him? Any and all of these things might be able to get him looking forward again and that will help him want to take care of himself.
I hope this helps - please don't hesitate to reach out or private message - I am always happy to help if I can!!
I am sorry to hear about these difficulties. You are certainly not alone. It sounds like there is a lot going on here. Not all of it is necessarily related to diabetes. My perspective would come from closer to him than you. Be patient. nudge him in the right direction when possible. Avoid being preachy, heavy - handed, or panicking. This may provoke him to be even more reckless and self destructive, as young men tend to be at this age. Say your piece, if you must, and move on. Managing diabetes is about the long term. Good luck to you both. I wish you the best.
I have to second everything that type1moms has said. Scare tactics or trying to reason with your son about how his behavior now will negatively affect him in the future won't work because his brain isn't wired to think that way yet. The part of our brain that gives us the ability to think about how what we do now affects the future doesn't even develop fully until age 25! So, it's hard for teenagers and young adults to see the consequences of their actions because their brain literally physically hasn't fully developed that ability. Additionally, like type1moms said, he's probably trying to find something or someway to feel in control of his life. I agree whole heartedly with the suggestion to not over-react and keep a level head when discussing things like this with your son. Additionally, something that helped me immensely when I was his age was meeting other diabetics my age, too. Even if they weren't the "perfect" diabetics it was SO helpful to know that there were other people out there like me, in my same situation, who understood what I was going through. It almost "normalized" diabetes for me, if that makes any sense? Another suggestion I have is to find a counselor that specializes in chronic illness and have your son see them if he's open to it. If he's not open to it, it may be helpful for you to meet with the counselor so they can help give you some strategies for dealing with your son and helping him find his way through navigating this illness. Hope things start getting better for you guys, hang in there!
Wow, I am sorry for what you're going through. Unfortunately, given that your son is a legal adult, there's only so much you can do. Preventing him from driving was smart, and I hope he's complying because you're right, he could hurt someone.
Scare tactics don't work. But perhaps talking with him about how this is making you feel as his mother might. I would also seriously recommend finding a counselor or psychologist that has experience in these issues to assist your family. Also, talk with your son's endo if you can about other professional resources that might be available.
Be honest with your son - tell him that there's nothing you can do to force him to take care of himself. T1 is a bad hand to be dealt but you can live with it. He has to want to live with it.
If he is feeling depressed, he needs to understand that those feelings may be partially the result of the really high blood sugar. With an A1C of 14, he's running average blood sugar level of over 400. That makes my head hurt just typing it. A BG that high makes you feel horrible and can dramatically increase symptoms of depression.
Will he discuss this issue at all with you? When you do approach him, what is his reaction?
My son is only 12, and was diagnosed at 8 so we are in a very different place. However, we heard this guy in 2009 at a conference and we really enjoyed it. There are some good thoughts and ideas. I don't know how much would be applicable in your situation but I think it's still worth watching. The second half is the more useful info if you don't have a lot of time, but the whole thing is good if you want to feel like you aren't alone. :)
Hi Smmtc, I'm so sorry that your son and your family are having to deal with this. I was diagnosed Type 1 a little later than your son, I was 27 at the time. At that age, I viewed it as the most devastating news I had ever received in my life because it completely changed my world as I knew it. I was angry because I felt like I should be able to live my life and have fun like other young people my age and not have to worry about diet and injections and finger sticks. I was overwhelmed, angry, crushed, you name it.
Years later, looking back, I can clearly see that I was grieving and going through the stages of grief. Grieving for the life I *thought* I would have, diabetes wasn't part of that picture. Your son will get through this but he will have good days and bad until he gets to a place of acceptance.
You've gotten some great suggestions here. I wish your family the best and wish that I could offer more in the way of specific actions to take. People move through this journey with diabetes at different speeds. I'm hopeful that your son will find his peace with diabetes.
I hope your son will see that in the short-term taking insulin relieves physical sluggishness and restores mental clarity. Living life with A1C 14 doesn't feel good day in, day out. I do not accept my T1 but I feel so much better when I manage it.
So true. When I went into the hospital, pre diagnosis, my A1C was 12! I can't imagine going at 400.
When my son was diagnosed when he went to his girlfriends house for diner one night. Her mom is an ER nurse and could smell the fruity smell on his breath. She then saw him drinking a lot and going to the bathroom during a short period of time. She had him tested at a friends house and he registered “HI”. We then brought him to the ER. He was not admitted into the hospital but was given a long acting insulin shot and went home. We met the endo the next day and from that day our lives have changed.
His endo was very good however because my son was not taking med the endo accused him of selling the meds. He will not go back to him. I think the practice was helpful but I think it’s time we change doctors. The doctor feels you can’t help him if he doesn’t want to be helped. I believe that but he is too young to give up.
My son has gone and talked to a counselor but that lasted a short time. He runs from his problems. He was also diagnosed with a Thyroid problem. I am not sure if I need to go down to Boston and go to the Joslin Diabetes Hospital. Maybe they will not give up on my son!
It’s been a tough 11 months and I am hopeful it will get better.
I'm so sorry about your son's diagnosis at this age. A friend's son was diagnosed at 19 and he a similar reaction. Even though it was tough for my son to be diagnosed in high school at 15, at least we still had a little control and influence over him. He is at college now and just went to his first endo appointments by himself this December.
Two things helped us:
1). I think it helped that he had a role model in Toby Peterson, a NFL hockey player who has Type I Diabetes. He adopted his #17 and at least knew it was possible to play hockey at a high level with Diabetes if he kept his Blood glucose under control.
2). When my son began rebelling late in his junior year and complained about his older non technical (could not download the Omnipod #s) Certified Diabetes Educator, we switched (with the endo's permission and blessing) to a younger, just out of college CDE. His original CDE was too near my age and it was just like your Mother nagging you which I was already doing a good job at home. He likes to go his new one and actually wants to impress her with his numbers. She also has briefed him on several situations at college: drinking, exercising lows on campus and adreneline highs from competitive games and tests. He is doing well his first semester.
My son was also diagnosed with thyroid problems in the third grade.
Hang in there with him. It is a big adjustment but it will get better.
As "that kid" in high school who was always sick, always getting new diagnoses, and overall dealing with more than everyone else, I feel your son's pain. As an "adult", though, I see your perspective more than his.
What I can say to you is don't force him. As a mother, that's probably the hardest thing anyone can tell you. Teenagers rebel--it's what they do. The more you push him, the less he'll listen. In fact, if he's anything like me, the more you push him, the less he'll do what you say JUST BECAUSE he knows it upsets you. (I'm sorry--no matter how good a kid he is, pretty much all teens have done it at some point.)
With each diagnosis I received, I needed time to grieve. I distinctly remember the time between when I knew I had a food allergy and the time I was tested for it--I purposely ate nuts because I didn't want to give them up. It took me years (and three severe reactions) before I finally stopped altogether.
One day, your son will wake up and say "gee, I really don't feel well and I have the tools to do something about it. I want to live again". I can't tell you when that will happen--it might be tomorrow, it might be years--but it will happen.
I also agree with acidrock about hobbies. I play guitar, and it was my absolute refuge for everything, especially including health isuses. What other people don't understand, music does. What I can't express because it just doesn't make sense and no one wants to hear it, music is there. It sounds like your son needs an outlet/hobby to help him along and give him something to feel better for.
Lastly, an endo or CDE who has diabetes might be of some benefit. He'd have someone who can say "I get it, I know, I'm here and I understand in a way no one else does." A person like that would also be less likely to accuse him of selling insulin (who DOES that??) as well as less likely to give up on him.
I wish you lots of luck with him and I wish him lots of luck in learning to manage. It DOES get easier, it just takes a while. (((hugs)))