15 Not Helping Himself

[annvuk]

I have a 15 year old son who was diagnosed with Type 1 Diabetes at 3 1/2 years old.  His body is changing as well as his emotions, and he seems to be denying his diabetes. He has always been in poor control (I don't like to use the term brittle), and I am scared.His last A1C was 9.8. I don't know what to do to get him to participate more and realize that there are going to be severe problems if he doesn't start to help himself.  He will lie about testing his sugar (and I can't be with him 24/7), he will forget to bolus (he has better things to do). We have punished, taken things away, and nothing works. Any suggestions? We have spoken to his doctors and counselors but they have no further suggestions.

[JDRF-Team-RL]

Hi.  I'm not a medical professional, I'm the parent of a child with diabetes, just like you.  My daughter's 9, we worry about the same things that you are experiencing, we've already seen signs that we are headed that way.  My wife and I understand that we cannot be diabetes role models.  One thing we've tried to do is find people that have diabetes who are dealing with it well.  Are there any other type 1 kids you know that are his age or a little older?  Getting him around others who are dealing with the same issues who would be positive influences on him.  My daughter's met Miss America 1999, Nicole Johnson Baker, who was wearing a pump when she won the crown.  She's met Wil Cross, the mountain climber with diabetes.  She's met Gary Hall, Jr., Olympic gold medal swimmer.  (Side note:  we met all these people at the <a href="http://www.childrenwithdiabetes.com/activities/Orlando2007/" target=_blank>Children With Diabetes "Friends for Life Conference"</a> in Orlando.  Wonderful organization, great conference, I recommend you go if you can.)  These are people that she can see did great things and diabetes didn't hold them back.  But more important than that are the friends she's made locally.  A friend of ours from church has had diabetes for over 65 years, no complications.  A friend of ours whom we met through our local JDRF support group has a daughter with type 1 who is a couple years older than my daughter and they share stories and emotions.  

Our daughter isn't your son's age yet, but in preparation for when she will be, we've been doing some reading.  Kids that that age, or most any age for that matter, just want to be normal and fit in.  I suspect that's the reason he's doing what he's doing.  He's just tired of being different.  I'm not a counselor, but I don't think punishment will work.  I think he's just having some emotional growing pains.  Engage him, talk to him about what he's going through.  He needs to open up to someone.  Maybe talk to his friends, if they care about him they'll want to see him stay healthy.  So those would be the two things I'd do.  Hope that helps.

[JDRF-Team-cb]

That sounds tough-I can only imagine how helpless you feel. I am a 36 year old woman-have had diabetes for 26 years and I went through some very similar feelings as your son.  My HBA1C was as high as 14!!  Oh my-I hate to admit that, but I thought it might make you feel better.  I did great until I was about 18 and then went to college and had some problems dealing with my diabetes.  My problems started when I was 16-I wanted to be thin(I was-but had a skewed image of myself)and would not give shots and let my blood sugar go to high--but still somehow kept control--but then went to college and things went downhill--I couldn't deal with everything and all the stress of college and being diabetic-it was a difficult time!  

Anyway my suggestion would be to try and understand and give him a little room to breath and find himself. I know that is difficult--I am a mother now and believe me what I said is much easier said than done.  Taking things away from a person who has so much taken away already may not be the right answer. I always wished I had someone to talk to-someone non-judgemental and who would just listen to what I had to go through.  
I also wanted you to know that I got control over my diabetes and have had many, many years of low HbA1c's.  I know you are worried that he will get complications-my mother was too!  You are right to worry, but maybe he needs some time to adjust now that he is older.

[JDRF Team SGG]

As a volunteer for the Juvenile Diabetes Research Foundation's Online Diabetes Support Team, I want to encourage you to perhaps contact them about this issue -- they will put you in touch with a volunteer who is appropriately matched with this problem (several are young adults who have "been there" and others are parents who have dealt with similar denial issues when their kids were teens). I would encourage you to ACT -- don't just sit and watch -- for some young people have contacted us with complications who are as young as 19 years old! Unfortunately, complications can occur in young people as well as in older folks who have had the disease a long time, and those young adults who are dealing with diabetic vision loss or gastroparesis (damage to the nerves that stimulate the digestive system) would give anything to be able to go back and make the important decision to keep good control over the glucose numbers.

That being said, I agree that MOST teens go through this. I did, too, and I have been a type 1 for 37 years. In my case, I have the "lucky" genes that seem to protect me from complications, so I am not damaged by this period in my life. But some are not so fortunate and pay for the rest of their lives. I know a young woman who lost her vision due to diabetic cataracts at age 19 and another young man who lives with pretty constant nausea and is in and out of hospitals constantly because his stomach no longer digests the foods he eats due to nerve damage. He is in his mid-twenties. They are living reminders that complications are NOT necessarily something that can happen after we have lived as diabetics for many years, but in some cases (fairly small percentages, thank goodness), they can happen quickly and severely after just a short time of high glucose levels. We have no guarantees that we will be the lucky ones.

So how to protect your teen? Realize that his denial is pretty typical and normal. I would suggest that the two of you spend some time together, just discussing it and how he might be able to start making steps to improve his control. Don't nag -- just let him know that you love him and are worried about him. HE is the person who must make the choice to protect himself, so HE is the person who needs to create habits that include testing his sugars and bolusing. Being too busy is understandable -- he may well forget to bolus after he eats. Maybe the pump is not the solution for him if the flexibility it offers is actually allowing him to not do the bolus when he eats. Maybe the option of taking a shot, and setting the mental rule that no food can be consumed until AFTER the shot is taken will help. Or maybe the pump really IS the best means of delivery for him (discuss and let HIM make the decision) but he needs to set up a mental rule of "no food until I test and bolus". One thing is true -- once he gets used to tight control, he will notice how much better he feels and this feeling of energy and clearheadedness may be the right incentive for him. I am a graphic artist and illustrator, and I know from experience that my brain works much better when glucose levels are normal than when either high or low. I value my artwork and my reputation as an artist enough to keep perfect levels when on a project. Maybe he needs to make decisions like this about something that matters to him, whether it be sports, music, or computer gaming. His performance is going to directly correlate with his glucose control, for the brain cannot function at its optimum ability when it is screaming for the glucose that is the brain's primary fuel. If there is no insulin, the glucose is present, but cannot be utilized by the brain, so it cannot function properly.

I would suggest that perhaps the entire family start out with a counselor. Maybe your son's endocrinologist can recommend one who is familiar with diabetes and how it affects moods and emotions. Many diabetics deal with depression, and during those teen years, we DO just want to "fit in" and be "normal". Testing glucose by doing fingerpricks and bolusing are activities that he may feel call attention to his disease, and he may indeed be in  a state of denial. The good news is that this period of life is a fairly short one (teens through early twenties for most) and if he can make it through safely, he probably will put forth effort in the future to take care of himself. Sometimes a girlfriend is the catalyst -- the girlfriend will start worrying about him and he will want to please her. Sometimes the teen just has to make some practical steps to make sure that the testing and bolusing happen: things such as creating habits that offer him privacy to do what he needs to do and rewards him for doing it. A teen's life is busy, and it is indeed a real chore for him to add diabetes to the already full life. Even if he does not exhibit depression, he bears a heavy burden. Many doctors believe that ALL type 1 diabetics should see counselors because this disease takes an emotional toll on all of us, and this may be a good first step to help you and your son get through this period of life.

I do wish your son a long and healthy life. If nothing really helps, then try to at least get his glucose levels normalized when he is at home, and if this means providing carb-free snacks and meals until his glucose comes down from an all-day high, then do what you can. And keep the doors open for communication. Most diabetic teens tell us that they feel very lonely in this walk -- in my 36 years of being a type 1 diabetic, I have rarely met other type 1 diabetics who were not actual type 2 diabetics who have been put on insulin. Perhaps joining your local Juvenile Diabetes Research Foundation chapter will bring others into his circle. You can make this request on their website: www.jdrf.org (go to the Online Diabetes Support Team link and fill in the questionnaire and ask for info or possible correspondence with a volunteer -- you can even ask for a teen to correspond with your son for support).

[blue_eyes51988]

Hi, there. My name is Elizabeth, I'm 18 yrs. old, and, like your son, I also was in poor control of my diabetes at the age of 15. I've been on the pump since I was 14, just a little over 4 yrs. ago, and since I started using the pump, my blood sugar have been easier to control because of the fact of not wanting to be different, wanting to "fit in with everyone else" and have friends who'll accept him. I've been in the same situation he's in now. I know I can't really do anything for him except offer advice but, (and this is going to sound really harsh) he has to figure his life out on his own; he has to choose whether to take the advice he gets from others or deny that information he receives, whether it could help him or not. I'm not a doctor but if I may offer some advice, from one teen diabetic to another, I think you're son can get his life straight on his own but he has to be willing to change his compliance, the way he takes care of his diabetes. I mean, he could just be going through "diabetes burnout", where he doesn't really care about whether he takes his insulin, check his blood sugars, or keeps his A1C in control or not but this could just be a result from too much stress at school or in the home and a desire to just be like everyone else and not having to put up with diabetes. I just started college in August and I know how it feels, wanting to be...normal, like everyone else. I don't know how many times in the last month I've ask myself "Why can't I go on trips with my friends?", "What harm will one glass of alcohol do?", or "All of my other friends are doing it, so why can't I?" It's hard and pretty discouraging at times but it's just something that takes time to understand. Tell your son that I said for him to look at his life and see what he can do to make it better. It may take a few tries to get everything back to normal but just have faith, okay? God never gives us more than we can handle. :)