Parent of 19 year old

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dianawstevenson Posted: Wed, Oct 2 2013 10:32 AM

I am new on here so if I mess this up please forgive me.  

My daughter is 19 and was diagnosed at 10 with type 1.  She was good about her care for about 6 years but when she turned 16 she went downhill and is continuing to go downhill.  She does less and less as far as her care goes.  She goes days with out checking her blood sugar or even bolusing.  She has a pump and is very smart and knows very well how to use it.  She is a sophomore at college in our town.  She lived in dorms last year and had a seizure.  her roomate found her and saved her life.  We convinced her to live at home for health reasons as well as financial.  We have a great relationship except when the discussion turns to diabetes care.  She gets very mad and just seems to not care.  I don't know if she is burned out, depressed or what.  She works and goes to school and aside from diabetes you would not know there is anything wrong with her.  She has a very happy disposition and has since she was a baby.  She does pretty well in school and at work.  Everything else in her life seems to be going well.  I have talked to her endocrinologist and they just tell her to do better.  She says ok and out the door she goes.  her pediatrician tells her to do better and go visit the endocrinologist.  I made her go to counseling last year after the seizure and she hated it and told the counselor so.  The counselor said there was nothing she could do and that if I backed off she would own her disease and be fine.  It has gotten worse.  I try to stay out of it as much as possible but it is hard to basically watch your daughter kill herself.  If she had anorexia or some other disease that you could easily see someone would commit her so she could get help.  I feel like she needs help but I don't know where to get it.  

Can anyone give me advice?  

Thanks.

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Debbie replied on Fri, Oct 4 2013 11:57 AM

Hi – I am sorry about my delay in replying to your post.  I am glad that you have reached out for help.  It sounds like she could be experiencing diabetes burnout.  There is a great book about diabetes burnout by William Polonsky called Diabetes Burnout.  However she may not have any interest in reading the book – but you may want to read it.  Diabetes burnout can happen when you are feeling overwhelmed with all the tasks that go into managing diabetes.  Diabetes is such a hard disease to manage because there is no break, it is forever, and you always have to think about so many things – for ex. what is my blood sugar?, how many carbs are in that food?, do I have all my supplies?, am I feeling low or high?, did I take enough insulin?, do I have ketones?  In addition, no one else really understands diabetes until they have lived with it so it can also be very isolating.  I usually recommend that individuals with diabetes who are burned out try to ask for help.  It does not matter how old you are – everyone needs help sometimes.  However I think the person with diabetes should decide who should help and how they should help.  Like would your daughter let you check her blood sugar in the morning?, or count carbs for her at meals?, or pick up her diabetes supplies?, or make her appointments?  I know she didn’t like the counselor last year, but would she ever consider meeting with a counselor that understands diabetes?  I don’t know where you live, but if you are in Boston we have a behavioral and mental health team at Joslin.  Some people find it helpful to meet with a counselor when they are already here for medical appointments.  Maybe you two could go to the appointment together?

 

Also does her diabetes health care team know that she is not checking blood sugars?  It is very dangerous to be on the pump if you are not checking blood sugars.  If the pump malfunctions you can go into DKA very fast and it can be life threatening.  Please tell her health care team that she does not check her blood sugar every day and they may want her to take a break from the pump.

 

Good luck to you and your daughter!

 

-Debbie Butler, LICSW, CDE

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heating24 replied on Wed, Oct 9 2013 12:23 AM

Try to convince your daughter to let you check her blood sugar everyday because she need it.

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amrad replied on Wed, Oct 9 2013 8:25 PM

Maybe she could look for a mentor, google College Diabetes Network as they may have a office at your daughters college.

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