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115 Responses

  1. Heather
    Heather April 7, 2010 at 4:54 pm | | Reply

    I felt like I was reading a story about my stepdaughter who now is taking better control after he ICU admission and a BS of 1080 and almost dying. No that was not a typo. Watching your child walk around weighing 78lbs at 20 years old with an A1C of 16 is heartbreaking. As a parent you want to do something but at this point she is an adult what can you do. Thank you for sharing your story its so great to know we are not alone. I also have a son who is wonderful, most of the time with managing his diabetes and we are heading into his teen years and I know its going to be hard. The best advice someone gave me is, make him own his disease, he has to live with it his whole life not you. As a parent we take on the role of being diabetic and we are not. I do thank god that my childrens disease is managable while others are losing their children to life threating illnesses. Don’t give up hope our kids will continue to thrive. I will not complain about those used test strips on my counter any more my eyes are open to that at least he is checking his blood. :)
    Thanks you!

    1. Beth
      Beth March 12, 2012 at 7:21 pm | | Reply

      My heart goes out to you. We are nearing the teen years. Our son was dx’d at 4. he’s now 9 on the omnipod and using Dex7. As an added layer to D life, he was also dx’d with Aspergars. Thus far he has been a child who doesn’t sneak food and we still are in charge of his day to day care. But he will soon be in 4th grade at the middle school, where he will be expected to do much of his care himself. Honestly, while he is taking more responsibility for his care, he still has a long, long way to go. I’m terrified of the teen years. I’m terrified of the college years. and I am very, very thankful for the friends we have made in the D community with whom we can talk and share our struggles with Diabetes. Thank you for sharing. God Bless.

    2. Hannah F.
      Hannah F. March 16, 2012 at 12:36 pm | | Reply

      i know how you feel. I’m 15 and have been in the situation 7-10 times. I’m not proud of my decisions I ahve made. I just got so sick of dealing with it that i just didn’t care anymore. I live in galesburg, IL and have been ambulanced to Peoria, IL and have almost died in the process. i thought I had been passed all the drama. It started my 8th grade year. I recently got ambulanced back to peoria and am not happy about it. I want to change the way things are in my life. now, I’m on a better path and i never want to see the hospital bed again untill i have kids.

      Praying for a cure

    3. Heather Balliew
      Heather Balliew April 25, 2012 at 10:18 am | | Reply

      I just felt like I was reading over something I personally had just typed myself! The last 3 endo visits my 12yr old daughters A1C has been an all time high since she was diagnosed at the age of 6. I keep hearing puberty thats all anyone has ever really said! She has been a very mature girl grown up very fast living with a something that can not be taken lightly and has stumbled many of times wanting to be like the others. I have just recently loosened the ranes and said its time she takes on some of this responsibilty because I myself 32yrs old was diagnosed 8 months ago with type 1 and I know first hand now how she feels. So with that being said last night she didnt check her sugar before bed and I was going to check it for her so I did only to look and see what it had been before supper well I realized that she had been over 200 all day which isnt(or so I thought) normal for her to scroll down even further to realize why her a1c was worse this time she hasnt been checking at school she checks at 915 then not again until after school so she doesnt even know what her sugar is at lunch and just bolus’ what she thinks she needs I confronted her told her that I had been trusting in her and that I knew she knows how to take care of herself and she proceeds to tell me I dont know how hard it is REALLY i lived 32 yrs without it and it has totally turned my world even though I dont eat bad exercise 3-4x’s a wk so she said I’ve just had it for so long and its so hard. I believe the alternative will be a LITTLE harder!! I always wished I couldve taken it away from her never realizing I would get it to learn how to better understand her and the way she feels as hard as it is I will stand by her never give up on her and hopefully she will turn back around to realizing right from wrong and that its ok to be YOU~ Luckily there is treatments etc for diabetes and its terrible but isnt the worst thing and Ive always tried to tell her that. One of her friends died at 12 with neroblastoma cancer and she suffered for years…BE THANKFUL its ONLY DIABETES I feel So sad for the life these kids have to live!

    4. Liz
      Liz December 1, 2012 at 4:26 pm | | Reply

      My daughter just came home from a 4 day hospitalization. She does not have diabetes, but her 15 year old roommate does, and it was apparent that she is suffering from many of the same issues. I had to google on teens and diabetes and compliance, because I was horrified at the response of the health team to this child. I just want to know if any of you have experienced this kind of thing. Even though the hospital team was not having great success with her, in the end, she was discharged to a Children’s Home rather than to her mother, and at her discharge was restrained on a gurney (though she was not struggling or resisting) by police….apparently all because she was diabetic and non-compliant. I know there could be other issues, but since HIPAA laws were utterly disregarded and I heard so much of what went on, I can tell you that is the only charge I heard against this mom. I am just wondering if anyone else has ever heard of such a thing. I can’t help but think there was some racial/socio-economic prejudice going on here as well.
      You’d better believe that come business hours Monday morning I’ll be picking up the phone.

  2. Trina
    Trina April 7, 2010 at 5:32 pm | | Reply

    Thank You for sharing!! Unfortunately I know exactly how you feel…my now 11 year old daughter was diagnosed @ 6 & recently hospitalized twice w/in 30 days due to “highs”. All because she “just wanted to be like all the other kids & not deal with it!” Thankfully she’s doing much better now….but as you know that doesn’t necessarily lessen the worry or heartbreak I feel every time I have to say “What was your sugar?!?!” or “Let me see your checker!”
    Thank You Again,

    Praying for the CURE!
    Trina

  3. Colleen
    Colleen April 8, 2010 at 8:22 am | | Reply

    Thank you for this! I was diagnosed at 18mos and am now almost 21. This is my story. I’m told that when I was little I was the “perfect” diabetic, but the only memories I have of my diabetes are horrible endo appointments where I was yelled at because my A1C wasn’t a perfect 6, and my parents were berrated for not taking better control. (when infact it is not their disease at all! It’s mine!)

    From preschool-8th grade, I was the ONLY student with T1D in our school system. Teachers were not happy to have a diabetic student, and my parents had to fight tooth and nail to allow me to be in regular classes and not special needs. Imagine that! Special needs classes for an A/B student because she has diabetes!

    In high school I realized I had more freedom, and started skipping breakfast blood sugar checks. And by my freshman year in college I was hardly checking at all (or bolusing). As I write this now ( finishing my Junior year in college as an Occupational Therapy major with a minor in Psychology) I know that I have not checked my blood sugar in probably close to a week or two. <– Oh I know how dangerous this is, and all the horror stories that should come with that statement, but like your daughter I get the energy to be great with my diabetes for a week or two then I'm back to not caring.

    I feel horribly for my parents, who know that I do not take care of myself, but I don't want to disappoint them anymore by not being the perfect diabetic, where I am near perfect/stride for perfection in all other aspects of my life.

    I am tired of being the only T1D (even in college) I know, and feeling like I am the only T1D that doesn't have her D-life under control.

    This was an amazing story to read, I am so glad to know that I am in fact NOT the only person in this situation! Thank you

    Hope for a cure!

  4. Eddie
    Eddie April 8, 2010 at 11:04 am | | Reply

    Thank you for this wonderful. I know exactly how you feel. My daughter is only 11 and we had to make two trips within 11month for the same reason. I blamed myself for not double checking each time she tests. I think she just wants to be like everyone else. I will more understanding of her now that I have read your story. Thanks you so much and lets all pray for the cure.

  5. Terri
    Terri April 8, 2010 at 5:54 pm | | Reply

    I met you at the JDRF Children’s Congress when my son was a representative. I want to thank you for being so honest about your experiences. I suspect more often than not teens and college students struggle with wanting to be free from diabetes. I think I am also not alone in feeling that I didn’t measure up to the other perfect parents with perfect kids, even though we tried to do everything “right”. My son is now 17 and through counseling we are working on getting him ready to be on his own in college…walking the fine line of being a support without being a hindrance. Just today an old high school friend of mine related that his college age niece had just spent her second time in the ICU in 3 months, having been found unconscious by her roommates. These are the realities and fears we live with, and it helps to know we are not alone.

  6. Karen
    Karen April 19, 2010 at 9:38 pm | | Reply

    I’m a type 1 diabetic, am now 26, and was diagnosed at age 11. I also went through the stage of just not caring about my diabetes, especially when I left home and went to university. From my experience, I had my parents and doctors telling me that I needed to be keeping better control, but I just didn’t care.

    I’m not sure whats changed but in the last 6 months I’ve started testing more and am learning about carbohydrate counting (I’m from NZ, from the sounds of things we are lot more behind in Diabetes care than America! My doctor basically told me the other day that pumps aren’t a good idea because they are so much work, she didn’t even mention all the benefits!) I’ve reduced my HBA1C from 9.2 to 7.5. I’m not sure that anything would have changed my attitude when I was younger although I do think knowing other type 1 teenagers and being able to discuss how much of a pain having diabetes was might have helped. It might be because I recently got married and we’ll want to have kids in the future, so my diabetes isn’t just affecting me, its affecting my husband and potential children.

    I’m sorry I don’t have any helpful advice, but from the few other diabetics I know, they have all gotten over this period in their mid 20′s, so maybe its just a phase that most of us go through. I do know though, that its not lazyness, and I’m sure that most of you don’t accuse your diabetic kids of that, and if you do tell them that they’re lazy, I can tell you right now that that will not work at all! Maybe try rewarding good HBA1Cs, or ones that are better than they previously were. Even though I’m not a parent I know that your childrens diabetes must cause you so much stress, but just remember that your children can’t take a day off from diabetes, so if there is the occasional slip up, its not the end of the world. In the end its their decision how they deal with things, and you don’t want to ruin your relationship with them by alientating them by always going on about their diabetes.

    1. Ally
      Ally May 16, 2012 at 6:02 am | | Reply

      I am from NZ aswell, my doctor has repeatedly tried to ‘bribe’ me with an insulin pump in future if I finally get my diabetes under control, and although I want one more than anything – I just cant seem to do it, but I dont know why? =(

  7. Debra
    Debra May 4, 2010 at 9:28 am | | Reply

    Thank you Moira for your brave story. My youngest sister, Maria, has T1D and she is 26. My mother calls me continuously about her ups and downs. My sister has blackmailed my mother with the threats of not take her insultin for whatever she wants… rent for her new apartment… food money… you name it. I want to be kind and understanding but my heart is resentful and angry. Maria boozes it up with alcohol every chance she gets… and about three month ago, she landed in the emergency room with TKD … and an $11,000 hospital bill that she can’t pay. Death did NOT scare her at all. And she looks to mom to pay it all. I tried to talk to her … and she kicked me off her facebook page and refuses to take my calls. It is depressing because I think that she may be the first of us kids to be put in the grave. My mother lost her husband in November … she should enjoying herself… travelling the world … visiting her other children … but no … she has to babysit a 26 year old. Then, I feel guilty for not being nice to Maria … and I get very depressed about the whole situation. It is a constant DRAMA… I often think if it is this bad for me… it must terrible for my mom. If I had a wish, it would be that my sister would take care of herself.

  8. Kristen
    Kristen May 10, 2010 at 9:21 am | | Reply

    Thank you Moira, and all the rest of you for your comments. THIS was exactly what I needed to read today, as we wait for blood test results to confirm (or not!) if my 16 year old T1D daughter has an abcess that needs to be surgically removed, caused by high blood sugars. The emotions of her diabetes are what we all seem to struggle with the most. I so appreciate your honesty. It is truly nice to know that as we struggle day to day, we are not alone in our battles with this disease, and with our children! As we drove to the endocrinologist the other day, and she raged, mostly in fear, I came to realize that she really has not accepted diabetes as a part of her life. She was diagnosed 5 years ago. But I am still left wondering…what can I do to help her facilitate that acceptance? Counseling? Support groups? I have suggested these over the years, but she tells me she will refuse to go. Her A1C has been consistently high the past year or more. The docs say she could go blind before she gets to college. Once to the hospital for DKA. But none of these things have been a wake up call for her to take on the responsibility and acceptance. And then, it becomes an emotional struggle for all who live in our house. As many of you know, we’ve tried to set limits, but she breaks them. Sometimes she lies…my sweet girl who I know knows that lying is wrong…will lie to get what she wants without having to test, or correct. I need some advice on where to go next…..

  9. Moira
    Moira July 28, 2010 at 6:48 am | | Reply

    Hi Kristin,

    First you can feel free to find me on facebook if you want. Second, DO NOT panic too much. I got so tired of threats — and the endo saying she will go blind before college is a threat . . . she won’t. You take her for eye exams, right? I mean, yes, we want our kids to have tight control and high a1cs are horrid . . . . but how about a little empathy? We are moving to a new endo (well my daughter is) and the first thing he wrote was “Listen, not knowing details yet I do know you’ve been a teen. I have MANY patients who struggled in teen years and have now had diabetes and few if any complications for decades. It’s not too late. Don’t worry. We can make it work.” OMG – I almost screamed I was so relieved to get some CARE in our “care.”

    Anyway, I do have some ideas. Find me on facebook — Moira McCarthy Stanford — and we can chat.

  10. Michelle
    Michelle September 22, 2010 at 6:34 am | | Reply

    Great article… its good to know that we are not alone. And there’s hope for no complications as a result of this time of constant turmoil.

    It makes me think of the time when a family member (sister in law) said after a stay in the ICU for my t1 daughter in DKA, “God, how could you not know what was going on?” She was 17 at the time and not being truthful about her testing and bolusing. I took that to heart and have been beating myself up for not catching the lies. I feel like I’ve been judged the last 7 years trying to deal with this. Feeling inadequate, feeling like I didn’t instill good self esteem or coping mechanisms. My daugher is 20 now and still not caring for herself properly but I”m hoping for the day it ‘clicks’ and I hope its not too late.

    Thanks for the Honesty!! Its helps.

  11. Janine Ferreira
    Janine Ferreira January 9, 2011 at 11:03 am | | Reply

    Moira,

    Its the first time I got to read this letter you wrote about teen and diabetes I am not a teen but I was diagnosed with T1 just before my 21st birthday but I can relate to your daughter I am turning 30 this year and I am still struggling now and then it is like an permanent struggle but you get through it with the support that we get from our loved ones like you give like your daughters its difficult if you get judged by everyone but lucky for me I have a father that could give me guidance even though we stay far from another but we speak on the phone regulary. but it helps to see that there is others that relate to what I’m struggling with. Thank you for this letter.

  12. Sarah
    Sarah January 10, 2011 at 10:28 am | | Reply

    Thanks for the info. I struggle with the exact same issue with my son who is a high school jr, diagnosed about 3 years ago. The biggest obstacle is my ex-husband (who he spends every other week with) has not been supportive or involved in the medical treatment from the beginning. He was didn’t spend any time with my son when he was hospitalized initially and was resistant to the mandatory education courses. He still does not attend ANY endo appointments so probably (not that he cares) is unaware of how poorly my son is managing his diabetes. It’s unfortunate his initial hospital stay was so luxurious because I wish I had some sort of tangible threat that would get him to “step it up”. He doesn’t want to drive and has a very limited social life. Today was actually the first day I refused to take him to his appointment and told him his dad had to since he was at his house this week. He treats me disrespectfully so in a way I feel as though I’m enabling him by being the one to take him to his appointment. We have to go to see the endo about every 2 months because he’s not managing it and his A1c is still well over 8.5. So frustrated, he is a bright kid with aspirations to become a pharmacist. At this rate if he keeps taking tests with his blood sugar high (I’m guessing because he doesn’t test) he won’t get anywhere and things will become worse. I know he’s depressed but my ex has put such a stigma on the “depression” diagnosis that he won’t go to counseling or take anything.

    1. Judy
      Judy July 1, 2013 at 11:05 am | | Reply

      Just ran across the blog while googling for answers to help my 15 year old son and myself deal with his mismanagement of T1 diabetes. Sarah, I too have to deal with an ex-husband who has no clue or interest in our son’s health. My son is angry, irritated, and cries at the drop of a hat. I know its because of the constant highs, but I get frustrated and so does him. I don’t know what to do, I worry all the time. He was diagnosed at age 12 and did perfectly the first year or so.
      My family thinks I am to lenient and should be harder on him, but he will be 16 in two months, what am I supposed to do? I sometimes feel so alone and sad for my son. He hates having diabetes and I sometimes wonder if he has a deathwish…Thank you for the honest comments, for the first time I don’t feel like I am such a bad parent for not having his diabetes under control.

      1. Sarah
        Sarah July 1, 2013 at 12:34 pm | | Reply

        Hi Judy – you sound exactly like me and your son sounds exactly like mine. It’s been a rough road and it doesn’t help when people who aren’t in our shoes make comments about how we should handle it. I’m starting to discover that most diabetics whether they are 1 or 2 don’t handle it well, even when it comes to amputations and other serious warnings. My son STILL doesn’t test his glucose and just goes by ‘how he feels’. I still nag him but it just goes nowhere except a fight and drives a wedge between us. The diabetes is also connected with his depression which he is at least consistent with taking his prozac. He just spent his first year in college (which worried me enough) and although he didn’t test and who knows what else, his A1C went down. We were fortunate to find an endocronologist who is Type 1 herself (diagnosed in med school). She speaks to him on adult level and plays it cool (unlike the you’re going to go blind, amputations threats) and emphathizes. She also has given him small goals like to have SOME readings on his meter, even if it is for the week before his next check up. It will always be a constant battle for me with his health – I was sick as a child and wouldn’t wish that on him so that’s another trigger. So many people ask me “how he’s doing with his diabetes” and I just tell them either “who knows” or “he is a bad diabetic”. Then when I elaborate I can feel the “well you should……” judgemental thoughts from them. Then I get the “when are you going to stop worrying about him?” from my boyfriend, who, get this…IS A PHARMACIST!!!! Um how about NEVER?? Apparently there is some cut-off I’m unaware of OY! Has his endocronolgist recommended antidepressants for him? Brandon has confided in my daughter in the past that he was suicidal before he was prescribed prozac. The prozac has helped but college has actually been a BLESSING. He has found other kids with diabetes and basically reinvented himself. He is still a terrible diabetic and I will never stop worrying about him but if there is any reassurance, things will get better but SLOWLY. You are not a bad parent…a bad parent is someone who chooses to be in denial and ignorant – oh wait and follows this mysterious ‘deadline’ of discontinuing to worry LOL!!

        1. Debbie
          Debbie July 13, 2013 at 3:20 pm |

          My almost 20 Year old daughter was diagnosed T1D at 14. She was a model diabetic until she turned 17. She is self-managing, and we trusted her until one endo appt when her A1C was 16, she told them she would rather die than deal with her father and me with her non-compliance revealed, and they marched her into the emergency room. Insurance refused to pay because they said this was mental health, not diabetic related! We fought it an lost. She is now almost 20, has had 2 other hospitalizations, went away to college for 1 year and was totally non-compliant and had to leave on medical leave of absence, but of course her loans will still need to be paid. So now she’s living at home, going to college 6 credits at a time (to keep her loans from coming due) and she’s still lying to us about her mgmt. Lately she’s got serious gastroparesis and can’t eat any dairy or fresh veges. The other day we went for a blood test related to her gastro conditions and her BG was 727! And all the while she’s telling us her DB is under control. She’s on Prozac, seeing a therapist, and all the bills are going to bankrupt us. My husband is feeling like his retirement is impossible because her medical bills will suck up all our $$$. And I get to be the bad guy – if she doesn’t shape up, she’s gonna have to move out and pay for her care on her own. I know that’s a death sentence for her, but I can’t seem to get this smart, competent kid to save her own life. I’m freaked out that she’s killing her future.

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  14. Karen
    Karen April 21, 2011 at 10:50 am | | Reply

    I am so glad you shared! We are really going through a rough spot and I feel so alone. My son has been diagnosed since he was 4, and these past 2 years it’s like he could care less if he goes into DKA. I am at my witts end. I cried seeing my feeling written in your article, especially about the complications on your watch. That’s me to a T! Thanks for being honest.

  15. Anne Chaffin
    Anne Chaffin May 9, 2011 at 4:35 am | | Reply

    Hi Moira,
    This is Anne Chaffin. We met several years ago when at a JDRF national conference. I was just sent this link by a friend who read it. Thought it was a near perfect description of my life. As you know being in the ‘spotlight’ and one of those very active and proactive moms with a T1 child should mean we and our child have it all together!! Ha! Being on the JDRF BOD and involved in its activities seemed to add pressure to be ‘in control’ (both of us), but we just were not and have not been for several years. My daughter, diagnosed at age 8, and now just about to hit 21 has pretty much struggled since 14 (as have I) in all the ways you describe. It was good for me to read about the addition to freedom as an apt reason why a teen or anyone would want to go on with their life this way. But it does make total sense and and is not just doing it to be self destructive. One thing that I am sure must be of some help to a person that is feeling this way is 1.) Honesty ( as you have put forth here and I have tried to do in the last couple of years 2.) Acceptance of them as they are and not putting them in a perfect mold 3.) Hope…Giving them hope that they can do this and that we will give (or will back off) to help them and try whatever approach is best for that individual person.
    I admire your courage and honesty and hope all is well with both of you.
    Fondly,

    anne

  16. Coleen Weiszbrod
    Coleen Weiszbrod June 27, 2011 at 8:46 am | | Reply

    Thank you so much for sharing your story. My family has also had a really hard time dealing with our 12 yrs. diabetes. She was great until the middle of last year. Now not so much. Her dad and I are divorced and had a great relationship up until a month ago. He has not stop speaking to his daughter over this and has said all sorts of awful things to me about it. I refuse to punish her for her numbers but work to be caring and understanding that she just wants to be normal and not have diabetes anymore. I hope he comes around since it is hurting her very much. I am so worried for her and hate to see her hurting her self. but I don’t know what else to do but care for her best I can.

  17. Jordan Bennett
    Jordan Bennett July 1, 2011 at 5:52 am | | Reply

    Hi,
    My name is Jordan Bennett,
    I am 14 yrs old and I am a type 1 diabteic
    I am in Year 9, but i was diagnosed in yr 7 when i was just hitting my prime years of being a teenager.
    I was diagnosed with a blood sugar of 89mmol, I was almost in a coma.
    I am really glad to have found your story moira because it helped me realise i wasnt the only person NOT DOING all my bsl and insulin injections.
    It really is horrbible and life threatening for your body, but i kept saying, ….. i will start fresh tomorrow!!!!I
    I have just recently been put on the pump, AND LOVING IT!!!!
    It is really helping me control my bsl levels!!
    I used to test my blood sugar once a day if that and make up blood sugars everyday. And when i did test it once in a day….. my blood sugar would read HIGH!!!
    (IM NOT TALKING A NUMBER I AM TALAKING hi SO hi IT COULDNT READ ON MY METRE, AND MY METRE READ UP TO 35MMOL)

    just a slight tip for those parents that have irritable or aggresive, angry kids when they are high:

    i am just wanting to tell any parent with a child my age, that if you think your child is acting out, or beeing more agressive or angry than their usual self, they know their blod sugar is high, and if you tell hem to test their blood sugar it really will tick them off!!! trust me i know. of course they will tell you “no its not” even though it really is, that just casue they dont want to say it. and if it is high…. when they test it dont say “told you ” or “knew it”, cause that tends to make me really upset and emotional.
    i hope this helped parents or teens!!!!
    p.s i strongly recomend the pump!!!
    p,s thanx moiraxxx

  18. MoiraMcC
    MoiraMcC July 26, 2011 at 6:49 am | | Reply

    Jordan I LOVE your comments and input! Thank you so much.

    BTW Lauren made it through her first year of college. First half was a charm — a1c dropped quite a bit. Second not so much but she did well and came home healthy and LOVES college.

  19. Sarah
    Sarah September 29, 2011 at 1:55 pm | | Reply

    Thanks for posting this Jordan! It’s really helpful to hear honest emotions from the ‘patient’. As most teens are usually not commucative or in touch with what’s going on, it’s nice to have a glimmer inside the diabetic teen brain. Keep the advice coming!!

  20. Susan H
    Susan H October 25, 2011 at 6:09 pm | | Reply

    Was so glad to find this forum. I am the mom of a 16 yr old son, who was diagnosed with type 1 10 years ago. He is a great kid, mature for his age, does very well in high school, involved in marching band and guitar playing. However, his A1C has been averaging 10 for the past year and before that pretty much in the 9′s. He’s been “forgetting” to test his BS, fudging BS’s when he does test (and gets high #s), and forgets to bolus with his insulin pump (either to correct a high BS or for food). In addition, he is overweight and has signs of type 2 (he also takes metformin). Being a retired RN, I am on his case regularly, reminding him to test (I sound like a minah bird sometimes). I’ll admit to trying to “scare” him into testing (telling him that his kidneys and eyesight could worsen if he keeps going like he is), without success. From reading these posts, this is obviously not the answer. His endo nurse just told us that he may need to go back to shots, since he’s not being compliant with testing and that he is not being responsible enough for the pump. I realize that I cannot “control” him like when he was young, but I get so frustrated when I try to allow him more responsibility (and less for me) and he then does not test. He’s gone days here and there without testing at all. All I can do is keep supporting him, and like many of the teen T1′s who posted, not freak out too much at the high #s. I just want him to take care of himself so that he can attend the college of his choice in 2 years, but unless he does a big about-face, am starting to doubt that this will happen.

  21. Jennifer Murphy
    Jennifer Murphy November 20, 2011 at 8:51 pm | | Reply

    I have read this before and it really describes what we are going through with my 17 year old daughter. The comment before the blog where she looks perfect on the outside hits home too. One of my coworkers has seen my daughter and has said you would never know my daughter has these problems by looking at her- she looks so healthy! Only a fellow parent of a diabetic would understand what our lives have been like!

  22. Carissa
    Carissa January 25, 2012 at 3:56 pm | | Reply

    You just told my life story…wow. I really did think I was the only one…Im only 15 and all I get is nagging. But this…This helped me. Thank you so much ma’am. Im so grateful.

  23. Janeen Wilson
    Janeen Wilson January 30, 2012 at 4:28 pm | | Reply

    My daughter is T1D and is 13 years old. She was dx at 2. I can see this beginning to happen and thank you so much for sharing. Does your daughter have any advice for my daughter as she moves into her teens? She is the only T1D in her school but is burned out on Diabetes Camps. We’ve had some bad experiences with the school around her bs and pump. She is pretty frustrated.

    Thank you.

  24. Cheryl
    Cheryl March 12, 2012 at 6:58 pm | | Reply

    Okay – you have me crying here. My daughter was diagnosed at 7 and was really a great soldier. Now she is 15 and has the same struggle every.single.day. I thank you so much for being frank and honest. We Mom’s of T1 teens tend to sit in a silent room of shame, having no one to talk to about our beautiful, smart and intelligent babies slowly killing themselves because they are teenagers. Thank you

  25. Jen
    Jen March 12, 2012 at 7:55 pm | | Reply

    Wow. I wish I had been able to show this article to my mom when my brother, diagnosed at 12, was a teenager. I don’t know what we could have done to help stop the self destructive path he was on, but maybe understanding his struggles might have made a difference. I didn’t fully understand what he went through until I spent a week with him, helping him recover from a kidney/pancreas transplant at the age of 30… which thankfully came just in time to save him from dying from kidney failure. That week was probably the first time he and I ever talked about what it was like growing up for him…I had no idea how hard it was. He continued his rebellion against diabetes well into his late twenties, when he almost went blind and was forced to go on dialysis when his kidneys failed.

    Thankfully, he received the gift of life and a second chance to make a difference in the world. He does that today by helping to raise awareness and participating in the annual Tour de Cure – his first one was only 9 weeks post-transplant, and I was never prouder than when I watched him ride across the finish line. He represented the USA in last years World Transplant Games in Sweden, and continues to inspire so many people he comes in contact with.

    Still, I can’t help but be so very aware of how this all could have turned out. I don’t know what the answer is, but I do know that articles like this are so very important in bringing the truth to light – even when it’s painful as parents to admrit how little control you have over your kids, or how confusing it is for kids to understand why they rebel when they know the consequences. Please continue to speak about this, loudly and often!

  26. Heidi
    Heidi March 12, 2012 at 9:54 pm | | Reply

    I work at a diabetes clinic for adults with type 1 and many of our patients are what I still consider to be kids. Sure they are of legal age, but they still think like most teenagers do. Living with a 13 year old daughter who has had type 1 since she was four, I have always dreaded the teen years. I have dreaded the usual suspects … drinking and diabetes, driving and diabetes, college and diabetes, but mostly rebellion and diabetes. Sadly, what I see in our clinic day in and day out is parade of young adults whose A1cs are downright scary. They don’t test, they don’t bolus and every time I see these kids I think to myself that this will be my daughter one day. My “perfect patient,” over-achieving daughter will one day be just like the rest of these folks. I don’t feel like there is anything I can do or say to change it. Diabetes takes a huge toll on these kids and “control” becomes everything when you live with diabetes.

    I remember what it was like after my daughter was diagnosed and how I dreaded giving her shots. I literally dreaded it, would put it off as long as I could thinking about how if only I could just delay the inevitable a little longer, things would be okay. So if I, a rational adult, felt this way, how could my teenage daughter not feel that way about something that she can never ever escape? Seeing these kids in our clinic makes me sad, only because I know the toll that chronic hyperglycemia can take on their bodies at this crucial time. It is the very rare case that we have a young adult walk through our clinic with relatively good control and a decent A1c, and we’re a top-notch clinic. It happens, but it is the exception, not the rule. To me it is an inevitability. I hope it doesn’t happen. I will do everything in my power to try to keep it from happening to my daughter, but in the end it is up to her. She has the control. And if she does falter, I will know that she isn’t alone and I will be there to help pick her up and get back on track. I am really happy that the diabetes community is talking about this and bringing some light to this dark secret. If we can talk about it more and open it up so that these kids are aware that they are not alone, that what they are feeling is normal, then maybe that will at least bring them a little bit of peace and freedom that they are trying so much to find.

  27. Sarah Jane
    Sarah Jane March 12, 2012 at 10:02 pm | | Reply

    Really? Her endo controls which college she goes to? That doesn’t make any sense to me. I was by no means in control of my diabetes when I went to college, and yes, damage and even death could have been done. I went a whole year and a half without getting an A1C test, without seeing my endo. And yet my training kicked in. My willingness to feel OK rather than awful kicked in. The highest A1C I experienced in college was a 9.6. Not good, but remaining below ten and being in denial still seems like an accomplishment when I look back on it. The hardest part was not being on a pump and having to tote my insulin to the cafeteria and take a shot.

    But honestly, she’s going to be an adult when she goes to college. If I had been kept from going to my dream school because of diabetes, I can honestly say I might never have come out of denial. It was the freedom of learning that I can take care of myself and feel good that allowed me to get to where I am today. It may be hard, but trust that your daughter has been doing diabetes for a long time, and witholding a grown up decision from her is not the best way to get her to control her diabetes. It’s not fair, and it will only cause more rebellion.

  28. Carla
    Carla March 12, 2012 at 10:46 pm | | Reply

    Moria –

    I can’t thank you enough for saying it more thoughtfully!

    I have a “non-complaint” T-1 daughter also. I hate that term every time the doctor says it.

    Paige was dx’d at 11 and was great for a couple of years, but then actually had several bouts of hospitalizations for DKA caused by hormone problems. Unfortunately, since she already had a history of poor testing they accused her of lying and not taking her insulin…which ended up not to be true. But from that point on, she was 14, she had the attitude they don’t believe me, so why should I even bother, care or try.

    Even when she was 16, the loss of Jesse and experiencing the 1st loss of someone like her and that she knew, had no effect.

    She’s 19 now and has started to think of her future, I think she starting to realize that no one lives forever. She also a CNA at Hospice, maybe that has had some impact. But she is getting much better at taking care of herself.

    I’m getting a daughter who’s finally learning what it’s like to be an adult and be healthy. She’s learning to be “semi-compliant”. I’ll be happy with that. It’s by far better than the alternative.

    She’s a JDRF Mentor, she’s actually great at getting younger kids to take care of themselves now. She’s been a babysitter for the family networking meetings for the last 7 years. She’s volunteers for the Gala, for the walk and last year for Jessepalooza.

    I too, love seeing those used test strips everywhere I see them. The more I see of them, the happier I am.

  29. Sam
    Sam March 13, 2012 at 3:04 am | | Reply

    Wow, your daughters story could be my own. Whilst I was going through college and Uni I never tested my blood sugar and ate without bolusing. I would still take my basal injection but that was it. Whilst at Uni the only time I ever checked was when I was out clubbing and the results were always high 30′s (I believe thats 500′s in mg/dl) – eventually my partner forced me to see the diabetes specialist, and he told me if I didn’t sort myself out I would be dead before I hit the age of 30. It woke me up. And now I check all the time, and am closer and closer to getting as back on track as I can. My only problem is that this rebellion has lead to complications in the form of peripheral nueropathy and we’re currently undergoing tests for autonomic nueropathy too, and it scares the heck out of me. I wouldn’t want anyone to suffer with these, and I honestly hope that sharing your daughters story will convince many many teens that rebelling is not the way to go. Your daughter is an absolute trooper!!

  30. Courtney
    Courtney March 13, 2012 at 8:28 am | | Reply

    I can’t thank you enough for opening your heart and sharing this. I have three children with diabetes. I was one of those Moms who had is all figured out. Then my children hit their teen years. We have almost lost our oldest (now 16) twice in the last year to “Freedom.” I am passionate about the need to get information like this in the hands of parents and teens. We aren’t warned about teen years when our children are diagnosed and because of that we are not prepared and have no idea how to deal with it and how to help our precious children. We are not bad parents and they are not bad children. Again, thank you so much for sharing your story, it helps me and I know it will help so many others who are struggling in the silence, scared to let anyone else know the ugly side of diabetes.

  31. Tamara
    Tamara March 13, 2012 at 6:35 pm | | Reply

    I have two teenagers with T1 and boy do I understand what you are saying. I can relate to so much you are saying and thank you for putting it in writing. So many people cannot understand the emotional stress this puts on our teens. They just want to be like everybody else and this disease does not allow that. I takes so much responsibility at a time when they do not want to be so responsible. Freedom would be a life without testing. We can only dream about the day it will happen

  32. Karin
    Karin March 13, 2012 at 8:25 pm | | Reply

    WOW! While I so appreciate the honesty of all that I have just read, I am now terrified, my daughter is 13 and just diagnosed in January. She is very diligent and has done an amazing job of learning how to care for herself. Does anyone have any ideas on how to avoid these situations durning the teen years and do any of you think that because they were diagnosed at much younger ages that they were beginning to experience diabetes burnout at the same time as they entered there teen’s? Any insight or strategy on how to avoid this “freedom” rebellion would be much appreciated. thank you all for your honesty.

  33. MoiraMcC
    MoiraMcC March 13, 2012 at 8:36 pm | | Reply

    To the recent commenters — it’s amazing how much we all share, isn’t it? Update: My daughter is a sophomore in college far, far away. She is doing fantastic. If you go to my blog (I have one now!) at http://www.despitediabetes.wordpress.com and look for a posting in January called GDD (Good diabetes day) you’ll read about how she is doing now. There is hope!!!!!

  34. MoiraMcC
    MoiraMcC March 14, 2012 at 8:14 am | | Reply

    Karin — I REALLY think that years of having it are part of this ….. most the kids I know who have this problem have had D for 10 years or so. I did write about what to do to try to avoid it on my blog. Here is a link: http://despitediabetes.wordpress.com/2011/05/20/teen-tips-learning-from-this-d-moms-mistakes/

    also I wrote about getting in the mind of the person with D here: http://despitediabetes.wordpress.com/2011/08/30/216/

    1. Jayasree
      Jayasree December 27, 2012 at 11:36 am | | Reply

      Do not a lot of money to buy some real estate? Worry no more, just beuscae it is possible to get the to solve all the problems. Hence get a secured loan to buy everything you need.

  35. MoiraMcC
    MoiraMcC March 14, 2012 at 8:15 am | | Reply

    Oops didn’t mean to hit send. In any case, don’t be afraid, just be aware — so long as you know there is a CHANCE she might burn out, you’ll always be ahead of it. That’s what I think. I just never even considered it until it happened.

  36. ShirleyP
    ShirleyP March 14, 2012 at 3:58 pm | | Reply

    I was diagnosed w/Type 1 Diabetes way back in 1986 when I was 20 yrs old and in my 2nd year of college. If u do the math, you can figure out I’m now in my mid-forties and have had T1 for 26 years. I do remember going thru a bit of a rebellious stage but I never had a A1c over 8.8 and have maintained A1c’s in the mid 6.0′s to 7.0 range for the last 15 years. One thing I’ve always done is tested. I wouldn’t let a day go by, even in my busiest times without testing at least twice. I’ve been on a pump for the last 10 years and therefore test more which results in tighter control. My son was diagnosed at the age of 3 and is now 8. I am ‘dreading’ the teen years and the eventual turn-over of control of his management to him. One thing I will ensure, as his parent and as his diabetes mentor, is that he understands the risks of mis-management. Personally, I have always looked on the bright side – there is always someone worse off so maintaining control has been easier for me with this perspective. I really hope this wears off on my son and am working hard advocating for better care in schools here in Canada (we don’t have school nurses like most states do in the U.S.). Thanks to JDRF for getting the dialogue going on such important issues and to resource websites like this one for keeping the communication going!

  37. Cheryl
    Cheryl March 22, 2012 at 6:55 am | | Reply

    Thank-you to all for your honesty. I wish I could have read this article and responses 10 years ago! My daughter has had diabetes for 20 years. She was diagnosed at age 4. The years from about 14 to 22 were very difficult. I remember looking through the memory on her meter and seeing that she might have tested 3 times in one week. I would get a horrible sick feeling. We would try to set up rewards and incentives for testing and recording. Sometimes it worked, sometimes it didn’t. When she went to college, I knew she wasn’t testing but could not do anything about it. She has had a lot of guilt about not taking care of herself. She is now 25, lives in NYC and has a great doctor and is in much better control. The best advice I can give on how to get through it is find a good endocrine practice and physician who doesn’t judge. I believe that helped her to have some periods of control. And try not to be too angry because even though they do not show it, they are very angry at themselves for not being compliant.

  38. Dina
    Dina July 14, 2012 at 9:38 pm | | Reply

    It was if I was reading our story. My daughter is 13 and this is the battle we face everyday in our house. She lies about her numbers, doesn’t test when she says she did, tests and doesn’t bolus, and just acts as if none of it matters. It is the most frustrating thing in the world. I spend a lot of time crying and wishing I had the disease versus her because it would be easier. The author is right about feeling judged. I am even a RN and I know the long-term effects, yet I still can’t seem to make an impact on my daughter.

    1. Moira
      Moira August 24, 2012 at 12:22 pm | | Reply

      Dina — things are SO MUCH BETTER For us now! All is GREAT! Read more at my blog (above) and reach out to me there if you need some help. We surivived it and she’s thriving! I’m gray and prone to wine drinking though LOL kidding. about the wine. well maybe not.

  39. Moira
    Moira August 24, 2012 at 12:21 pm | | Reply

    Dina — things are SO MUCH BETTER For us now! All is GREAT! Read more at my blog (above) and reach out to me there if you need some help. We surivived it and she’s thriving! I’m gray and prone to wine drinking though LOL kidding. about the wine. well maybe not.

  40. michael
    michael September 21, 2012 at 10:57 pm | | Reply

    thank you for the info and comments. any support i can get right now is much appreciated. i have custody of my step son, who is type 1 since he was 11, now 15, and %95 defiant. after reading some of your comments i realized ive been handeling the situation poorly!!!! seriously what should i do when nothing i try works? he says he would rather just get sick and die than do what he needs to! We need help plz! ive tried the reward approach, the punishment approach, he actually has no internet or tv right now, the scare tactic approach…..IDK. his mom is in arizona and we are in florida. ????? should i be thinking of hospitalizing him??

  41. raylene manning
    raylene manning September 28, 2012 at 6:29 am | | Reply

    i am crying here as i read this post… my daughter and i are no longer close .. she resents and hates me… i am so stressed out but trying to chill out… well i have no choice now for i am closed out… i am trying to just deal with her let alone her and her diabetes… as she is trying to deal with me and her diabetes… how do you stop worrying? is it right to let her learn and do her thing even though she could potentially harm herself beyond repair? is it not my job as a mother to be hated by her as long as she is healthy? its been two years of pure hell for us both since she somehow stepped off the right diabetic path to no path at all it seems… i love her to much and jump to her commands when called upon… now i am not jumping… its time to let her grow up and make her mistakes… like we should do .. but having a diabetic child well those mistakes can be so dangerous and harmful…. what an absolutely horrible horrible disease this is… its worse than cancer for i am a cancer survivor… its worse than most for you never know what could happen.. what you do or don’t do today gets you in 6 to 8 years…. that just freaks me out!!… oh my if i could only take it from her… we both would be so much better …. this story has made a difference thank you for sharing with me…

  42. Jeanette Nelson
    Jeanette Nelson January 19, 2013 at 11:28 pm | | Reply

    Dear Moira,

    My 16 year old daughter, Madeline is struggling with this too. She has been fora long time. She has been diabetic since she was 5 and has been in denial since about 7. I have four children, two are diabetic. You’d think I’d have this down, having dealt with it for so long, but I don’t. My son was diagnosed at 14 and is 19 now. We, trying to look at the bright side, thought it would be a blessing for Madeline to not be the only one with diabetes in our home anymore, but it has not helped. He manages his diabetes with very little effort. He’s also never been in denial. We move around a lot and have had various kinds of endos. The worst one, was the guy who made her feel like a complete heel, telling her she would die before she graduated from HS, on her current track. Her highest A1c was a 9.2, but it is regularly in the 8s. My son’s rarely make it above a 7.5. I think it does more harm than good to make her feel bad about it, but at the same time, what can I do? I’m at a total loss. She is getting very emotional about it now. I think she is depressed. I wish we had a support group or something but they don’t seem to have one that is active around here. People are too busy I guess. We are in the DC area. Anyway, it is 2:06AM and my daughter is in the ER for the second time in a month with DKA. It was her first time just one month ago and she was so dehydrated by the time we took her to the ER it took them 3 hours to get an IV in her. She was so sick I thought she might die. They tried putting in an IV at least 25 times. It was scary. They finally got one in, just as they were prepping her neck for a possible IV site. My daughter has always been scared of needles and so you can imagine how hard this was, but apparently she doesn’t remember how many times they tried. She was too out of it. Well, tonight she made the exact same mistake that she made last time. She ate pretzels without checking her blood or giving herself insulin. She skips the blood sugar and insulin more often than that, but as evidenced by the two ER visits within a month, her body is screaming at her to stop the madness. I’m pulling my hair out with worry. I don’t know what to do. Thank you for posting your honest blog. If you have any advice for me, I’d love to hear it. I am a total loss.
    Thanks,
    Jeanette

  43. Moira
    Moira February 26, 2013 at 8:20 am | | Reply

    janette I hope you get this. Please look into a program at Joslin in Boston called “DO IT” I blogged about it on my blog and it changed Lauren’s life. Contact me at moiramcc@comcast.net or on facebook if I can help more.

  44. Shaynes Weldon
    Shaynes Weldon February 27, 2013 at 2:11 pm | | Reply

    So supportive reading through all these posts. My daughter is just about to turn 18. In the UK they can drink at 18 and she has already made plans to go into Brighton clubbing. She has just been excepted into dance college in London from September and I am really scared that she will get into dangerous situations. She will be shareing a house rather than living on campus. She has had a couple of occasion when she has come home having drunk alcohol and gone to bed with her pump still in her handbag. We have also had to collect her from a party when her friend called to tell us she was drunk and we needed to collect her. Without us to check bloods through the night I dread to think what would have happened!

    Diagnosed at 6 her blood sugars where always pretty good in the low 7s when she went onto the pump at 10. Since she has taken on her own care these have gone up into mid to high 8s and even up to 10 for a short period.
    We have been involved with CWD & JDRF which has been a huge support but it doesn’t help at the end of the day with A1cs. That always seems to have to be a personal battle which you can’t always help them with as much as you would like. It can be a very lonely road for our amazing children as well as their families. We gave a good diabetes team here in Brighton but there is no phycological support. Big hugs to you all. Shayne.

  45. Cacy Thompson
    Cacy Thompson April 3, 2013 at 8:37 pm | | Reply

    I am a teen with diabetes. Type 1. I have had it for 6 years now.
    I am horrible at keeping track and when I think I’m gonna start over. I
    Never do. It makes me want to shut down and cry. I know
    That taking care of myself is the right thing to do and no matter how
    Hard I try I can’t keep my self in track.
    Any advice??

  46. Moira
    Moira April 4, 2013 at 7:46 am | | Reply

    HI Cacey,

    First of all, giant hug. I think the fact that you read this and asked for help shows you CARE. Too many parents of teens (and other people looking in) think you don’t care and you are just lazy or you just cannot be bothered. They do NOT understand the struggle you are feeling right now. I do, because I lived through it with my daughter (the one you read about above). First I want to tell you she is now a junior in college with excellent grades and a low a1c!!! She’s 500 miles away and thriving. She was NOT doing well but I still let her go — how oculd I let diabetes rob her of life experiences? So what helped her was first, going to an adult endo. I know you cannot until you are 18 but talk to your parents about you making the transition when you can. They just get this stuff better, I think

    Second, my daughter realized this: one of the reasons she was “failing” to turn things around was she was thinking of ALL Of it. SHe’s go to bed and say “tomorrow I”m going to check seven times and take all my insulin!” and then not do that and feel like a failure and give up. So what her new endo told her was this: Baby steps.

    Choose a little bit to do. If you’ve not been checking at all, promise yourself you are going to try to check every single morning when you get up and every single night befor you fall asleep. That’s it for checking to start. Do not beat yourself up if you miss a time or if you dn’t do more at first. What happens is you get into that habit over time and then you say “hmmm. I think I can check at lunch every day now too!” (OF COURSE TALK TO YOUR ENDO ABOUT ThiS! I am not your doctor) … also say, I’m going to give myself my long acting insulin every day, or I’m going to keep my pump on and working. TRY to bolus at meals, but only tell yourself you HAVE To get taht basal or long acting in all the time. Then move toward, okay, I’m going to try to take my insulin at meals. Baby steps.

    My daughter also did something that freaked me out: she changed her plan. She’d been on a pump for 12 years and decided that if she changed to shots (Pens), she’d HAVE To pay attention since she had no idea how to do shots. I was like NO NO NO well guess what: it worked. She will probably go back on a pump some day but she feels that shaking it up made her focus more. The same could go for moving to a pump from shots … just the change makes you pay more attention.

    I hope I’ve helped. Please keep us posted. You are NOT alone. Not by a long long shot. and just hat you asked for help means you are going to be okay.

    You also can ask your parents to set up a way to support you. My daughter hates nagging, but sometimes she says, I’m forgetting to take a shot at lunch. Will you text me for a few day sand remind me? If its on your terms you might not mind it …. and when yo ufeel comfortable you can say “okay mom back off!” LOL.

  47. Maybell
    Maybell May 8, 2013 at 6:58 pm | | Reply

    Very good info. Lucky me I recently found your website by accident (stumbleupon).
    I have saved as a favorite for later!

  48. Ashley
    Ashley May 13, 2013 at 7:01 pm | | Reply

    I’m literally going through this same thing right now. I’m 16 years old and I haven’t been taking good control of my blood sugars at all. everyday I try to convince myself to start getting ahead of the game, or at least stay on track with testing and insulin, but I always get so distracted with friends and other things. I haven’t been in the icu but I still need to get in control. how did you finally convince yourself to start testing and taking insulin again? was it just after the icu scare or something else? I need some suggestions because nothing I am trying is working. thanks

  49. Marci
    Marci June 25, 2013 at 5:48 am | | Reply

    I am so glad I found this article. My son is 16 and has had type 1 for 2 years. When he was first diagnosed he was perfect, did everything exactly as he should, had a normal A1C & thought, “what is the big deal? We’ve got this!” Boy was I wrong! Within 6 months he was sneaking food and not giving his shots. he was lying to me about his numbers. I read a bunch of books and none of them mentioned this. He went into a deep depression (he has always had depression & anxiety-we certainly did not need diabetes on top of it!). His grades suffered, he refused to go to school… It’s been a nightmare. He was hospitalized for 6 weeks last summer in a hospital that deals with adolescents with diabetes and mental health issues. He played the game and was released in 6 weeks. Then went back to ignoring the diabetes. I am stuck in this nightmare with him- he wants to be independent and hang out at home this summer. he should be able to at 16! He will sleep all day, not check sugars, stay up and eat all night and not cover his food. I have sent him to his grandparents whoo swear they will supervise him, but they feel if they say, “go check your sugar and write it down” he will! He refuses to reach out for support or talk to other kids. I have signed him up for diabetes camp this summer and he is very angry at me for this, I am hoping some maturity will set in soon!

  50. Sally
    Sally August 21, 2013 at 11:50 am | | Reply

    In case any of you are checking back in here, I wanted to let you know that Moira’s book about this very subject is now available: “Raising Teens with Diabetes” http://www.amazon.com/Raising-Teens-Diabetes-Survival-Parents/dp/1938170202/ref=cm_cr_pr_product_top

    Disclosure: I work with the publisher of Moira’s book, but I truly believe that if you found her article here helpful or eye-opening that you will be gain more wisdom and understanding from her book. Take care, all!

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