I have a 23-year-old son who was diagnosed with T1 when he was 15. He has been in and out of DKA at least once a year. The episode he had in April 2007 left him with brain damage and God only knows what other internal organ damage. He is not compliant at all with testing his blood sugar, giving his insulins, or eating right. He was on the pump for a while but was taken off of it because he would not give himself bolus doses. He viewed the pump as an external pancreas and just let the basal rates run. We have been told by 3 different physicians that our son is slowly killing himself. My husband, our younger son, and I have all been trying to get him to test his sugar, dose with meals, and do his sliding scale. We are all met with resistance. It is almost as if he is knowingly doing this to himself. Does anyone know if there is a place we can send him to help him manage his diabetes before he literally kills himself? After the last DKA episode we had an endocrinologist tell him that she had only seen 1 other person be as bad as our son was and actually survive. The other doctor said on a scale of 1 to 10 with 1 being fine and 10 being death, our son was a 9-1/2 during the DKA episode in 2007. Our family desperately needs some guidance but are not sure where to turn. If anyone has any advice we will gladly listen.
Thank you for your time.
Wow Patty, I feel for you. I don’t know what to tell you. You can’t make someone do something they don’t want to do. I myself was never the best patient, but I always took my meds even if they were late or not enough. Maybe he has to speak with someone that is suffering from complications due to poor control.
Diabetes is a bummer and a pain in the ■■■, but if he wants to live he has to take some responsibility and initiative. I hope someone here knows of a place, doctor, program etc that can help your son deal with his denial and take care of himself. He has obviously been on deaths door and that hasn’t made much of an impact. I hope you get the help you need soon!! Be strong and my prayers are with your family and son.
I would look for a psychologist or psychiatrist with experience dealing with people with chronic diseases. The behavior you describe sounds as if it’s a sort of depression or self-loathing. I don’t know if your son is trying to kill himself, or if his self-care so overwhelms and depresses him that he feels the need to ignore it to “make it go away”. A professional would be able to evaluate your son’s behavior and determine what steps might be needed for him to “get with the system”. In the end, it will be your son’s choice… but psychologists are (or at least should be) trained with the right words, in the right manner, to move your son in a more positive direction.
We have tried psychotherapy. He will go in there and snowball the doctors to where he has them believing that everything is right as rain. We can’t force him to go to therapy as he is now an adult. I have talked to his therapists before his appointments and filled them in on the situation. I always get the same response, “Unless your son is willing to come and see me, there is nothing I can do for him.” In my son’s mind he doesn’t have a problem. When I ask why he doesn’t test or dose his response is simply, “I don’t know.” 
Hi Patty,
I am very sorry for the pain you are going through. And I want to say this as gently as possible. I do not mean to offend you in any way. So I am going to take your cry for help as very sincere and respond in the same manner. It sems to me that your son is attempting suicide with out actually pulling a trigger. A psychotherapist is not enough. This makes a person assume responsibility that your son does not seem to want to do. Therefore in order to save his life I would suggest you take away the decision making on his part and make it for him. If it were my child I would commit him under a sucicide watch and get him some “in hospital” care. This can only be done for so many days since he is an adult. But once there, hopefully his doctors can manage some kind of therapy for him before it is too late. Death does not frighten him, but apparently living does. At this point, I would try anything. I know that this is a desperate action, but I believe that is where you are. I am so sorry if i have offended you in any way. It is not my intention. My heart and my prayers are with you and your family
If he will not agree to family therapy, I think I would have to do something drastic like comittal. My heart breaks for you! Many of us here have been noncompliant at times in our life, and others try and try, and still have troubles. Just this morning, I said to myself, I can’t take this anymore! But this situation is very troubling.
Patty, I want to add a little bit to my response above I only have a Master’s in counseling. I do not have a PhD. You should probably talk to a psychiatrist and get his/her cooperation before trying to make this move. I do definitely believe in what I have told you. I also believe that your son is asking someone to make his decision for him and I believe he is totally unable to make it for himself. He may just be completely overwhelmed. All of this big family on Tu diabetes will be with you.
Patty, of course, it breaks all of our hearts to hear this story.
We know how hard life with diabetes can be, but we also know that it is possible to live and live well with diabetes.
It sounds like drastic action might be needed… I guess it would be really important for your son to know that what he is facing is not easy and that you want to help. But if he is not letting anyone help, then forcing him to accept help might be the only option.
Please keep us posted and turn to us for support any time. We are here for you…
I agree with Kristin.
As hard as this sounds sometimes, it is very harder to help somebody that does not see the need for help.
Patty,
This is a very hard situation. We are with you.
I am going to suggest you look at the resources available through the Behavioral Diabetes Institute, to see if you can encounter additional tools to help you, your son and your family through this period:
http://www.behavioraldiabetes.org/
Patty-
I am sorry to hear about your son and I send my prayer out to you and him. I don’t know of any place to send him. I pray it works out well for you.
Patty…this horrible desease can be so much harder on the parents, apparently of any age child, than the victims themselves. Please know our thoughts and prayers are with you. Your son is lucky to have such a loving caring family. Best of luck to you.
Patty
May I suggest putting him on long acting insulin, and take off the pump? Even is he would not bolus short acting with meals, there will be enough insulin to prevent DKA.I have few teenagers with this problem, usually it is depression and despair.Lantus prevented the episodes of DKA while counseling & psychiatric & behavior counseling are going on
My prayers are for your son, I feel his pain…
This must be extremely difficult for the whole family, Patty. I just wonder if your son has something other than diabetes going on here. Could he possibly be angry or depressed? Maybe talking to a therapist would help to determine why he is not taking care of himself. This may sound ridiculous, but as a former psychiatirc RN your son may be suffering from depression severe enough for treatment. Alot of type 1’s suffer from depression. I sure did before my transplant. And I’m an adult and only had type 1 for six years. How much more difficult to be a teenager with this devastating illness. And checking blood sugars, taking insulin, etc. are no party either. If you don’t want to take him to a therapist, tell his doctor and ask if he could ask questions to find out if your son might be bummed out. Another thing you could do is focus on the things your son likes in life. Maybe music or football. And then do everything you can to help him enjoy the things he likes. Tell him you want him to be happy. If your son has had DKA comas that frequently he might qualify for a new pancreas. I got one four months ago and I’m feeling fabulous. It has changed my life so much. And this is a cure. No more BS’s, insulin, etc. He’d just be a normal kid again. I hope things get better. Colleen
Thank you everyone for your best wishes, support, and kind words. We took everything you said to heart. We just got back from our son’s doctor who will be placing him on an antidepressant to see if that will, as the doctor said, ‘Pull him out of this hole.’ If not, there is nothing left for us to do but watch him slowly deteriorate. You are all angels in your own rights. God Bless each and everyone one of you!
Patty
Patty, we are holding all of you close in or hearts and in our prayers. We are with you.
Hi,
I was reading this story to my mom, and she told me there is a center in Colorado called The Barbara Davis Center. Or else check with your local JDRF, as I’m not sure where you live.
Hopefully all gets better soon!
I will definitely check out the Center. thank you for the info.
Patty, hello, I am a psychologist with T1 diabetes, and read your plight. I was wondering if you could tell me where you live, and I will see if my connections where you are has someone that might be able to see and help your son.
Michael Fulop
Patty,
I wrote to Dr. Bill Polonsky @ Behavioral Diabetes Institute and he recommended this, based on the city you wrote you guys are living in (Appleton, Wisconsin):
“I just met two psychologists who work in a diabetes clinic in Janesville, WI. Not that close, but might be a good start. I don’t remember their names, but they work with a diabetes specialist named Dr. Timothy Reid. They both seemed like good and very competent psychologists. Dr. Reid’s office is at 608-741-2459. I might recommend that they, as a family, see Dr. Reid as well. He has a humanistic touch towards diabetes care.
Alternatively, they might call their local ADA and see if they had any counselors or psychologists they could recommend. But they really need to get to someone ASAP! I only wish they were closer to us down here in San Diego.
Hope this helps,
Bill”
Hope this helps.