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Hi..New here...At the end of my rope...HELP!!

Discussion in 'Parents of Teens' started by nikki8778, Jul 2, 2015.

  1. nikki8778

    nikki8778 Approved members

    Jul 2, 2015
    Hi everyone! I'm Nikki. My daugher is 15 years old and was diagnosed right before her 8th birthday. Things were good (well, as good as could be expected) until she turned 13. Since then things have been spiraling out of control. Her most recent A1C was 12.4. We go again in August but I don't expect the numbers to be any better. I feel like I'm fighting a losing battle. Anything I try to do to help her is met with a fight and resistance. For example, we just got the Dexcom continuous glocose meter. I was so excited. She was less than... The first DAY was great but after that it was just another fight. A fight changing the site, a fight getting her to keep the app open on her phone so I could monitor it. Just yesterday I got a call from her Dad (we're divorced) saying she had spent the night with her friend and accidentally threw away the sensor. :(:(:(:( And of course, the friend's garbage pick up ran that day, so now it's gone. I can't afford to replace it so I'm back where I started. Hopeless. I'm completely empty. I'm tired of fighting. I'm ready to give up. I don't know what to do. How can you help someone who refuses to help themselves. You can't rescue someone who won't participate in their own rescue. She lies about eating, checking her sugar, etc. She has gained a ton of weight. She is up to 204 pounds. When her sugar is high (almost always) she wets the bed. And I don't mean a little. It's a living nightmare. It smells up my whole house. At 15, how does that still happen??? I can't get through to her. Her endocronologist can't get through to her. The only thing I know to do is tell her, I will make sure you have insulin and supplies. I will take you to your Dr visits. Other than that, it's all you. IF you need help or have a question, I am here. But I can't keep up this trying to control it. It is destroying me, our relationship and our family. I have two other children, both younger than her. They need a happy engaged mom. Right now I am a depressed, hopless, ready to jump off of a building mom. Any advice or encouragement would be greatly appreciated. Thank you.
  2. nebby3

    nebby3 Approved members

    Jun 5, 2007
    Nikki, I don't really even know where to begin except to say we are here for you. It sounds like there is a lot going on with your dd. Is your Ex on board with trying to get help at least? Does he see the problem too? It sounds like you tried to get the endo to help but my only advice is to keep trying. It sounds like she needs some sort of counselor to talk to. Can your endo recommend someone? It sounds to me like a kid who is just not caring about herself at all right now. Your not going to fix the D related problems till you address whatever other issue there are. I don't know if it's possible but it also sounds like she's not in the right place to manage her own D care. Can you take it back? Do things for her again?
  3. kiwikid

    kiwikid Approved members

    Dec 29, 2005
    Can anyone at school help you out ? School nurse ? My 13 yr old is just starting all this rubbish, but I still pay for her phone data etc so she needs to step up. She doesn't want me knowing anything or interfering but she does want other things so its a pay off really.
  4. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Sep 23, 2007
    Your endo should be referring her for mental health support services. She sounds overwhelmed, depressed, isolated. You are an adult and you are overwhelmed, I'm sure given how physically horrible she must feel in addition to the stress of trying to manage her chance disease, as a young teen she must be feeling hopeless. If your endo won't help enlist the help of your pediatrician, if they won't help see if school can help you find low cost or free mental health intervention.

    Good luck.
  5. Theo's dad Joe

    Theo's dad Joe Approved members

    Jun 7, 2015
    Does she fix her own meals or buy her own food (in part)? Does she do her own laundry? Does she have responsibilities around the house, chores? Does she do her schoolwork? Does she have friends? Does she do any activities? If it affects her school work, and if you have an ILP then you might (should) qualify for help from the school psychologist (or district psychologist) who certainly has worked with similar cases.

    I am not implying anything about any of these, but they may help develop a picture.

    7th-10th grade are, in my opinion, the most challenging years for most kids, and for most parents. They will slip away a little bit during those years, but if you can get through about 10th grade with a decent relationship and some degree of mental health, things often turn around, so at least I can say that the work now may make a difference even if its really bad now.

    I dealt with kids in that age range who had addictions, were substance abusers, or were turning to anti-social criminal activity. The only reason that I mention that is that I may be wrong, and please anyone feel free to disagree, it is just a first reaction, that I would deal with non-compliance in management of a serious health issue in the same way I would deal with alcoholism or substance addiction or other dangerous behavior. That being said, those things are not easy to fix. It takes day after day after month after month of a) expectations; b) consequences; c) follow through. It is very draining.

    Have you clearly expressed expectations and consequences? I guess that should have been question #1.
    Last edited: Jul 2, 2015
  6. Michelle'sMom

    Michelle'sMom Approved members

    Aug 21, 2009
    ^^This. I would push for professional help, preferably with a therapist experienced in T1.
  7. quiltinmom

    quiltinmom Approved members

    Jun 24, 2010
    I agree; not any counselor will do. Counselor a are like deodorant....some are good and some stink. But you have to find one that works for you. :). Look for one specializing in teens with chronic diseases. Preferably one who will do individual AND family sessions. (I.e. He/she will include you, and your ex, if he will participate. Y may or may not want to include your younger children, depending on how much they are affected by this.)

    It sounds like there is a lot going on in her life, beyond the challenges of d.

    Good luck. Keep us updated and feel free to ask questions or vent here anytime!

    Forgot to add, there are lots of posts on his site that might offer you some good suggestions.
  8. mamattorney

    mamattorney Approved members

    Apr 9, 2013
    I absolutely feel the helplessness in your post. I, too, would recommend professional help. While getting her average bg down will definitely help her feel better and will likely play a large role in getting her to participate in her care again, professional help will help her work through any issues and WANT to take care of herself again.

    Meanwhile, I'd talk to your endo and figure out a way to get her numbers down somewhat without her having to be such an active participant. There has to be a way to be able to ensure insulin is going into her body at a reasonable rate to get that average bg down. It might mean hiking up the basal to cover some carbs eaten, it might mean switching insulin delivery methods, it might mean switching insulins, but this is a crisis situation and I think your medical team should be rolling up its sleeves to start thinking outside the box here to help.
  9. Wren

    Wren Approved members

    Apr 24, 2013
    I'm a developmental psychologist and parent of a 12-year-old w/Type 1.

    I get it, and want to recommend a specific type of therapy that has been shown to really work for teens like yours with Type 1. Multi-systemic therapy (MST) was developed for kids in the juvenile justice system - for kids who really have trouble following basic rules even when there are obvious consequences. It's been adapted for kids with high a1cs like yours, and it's one of the most effective mental health treatments we have for kids. It works because MST doesn't just treat the kid or the blame the parent - they work with families, schools, extended families - so it's not all on you (or your kid).

    MST is typically delivered in your home - they come to you. It's available throughout NC: http://www.youthvillages.org/where-we-serve/north-carolina.aspx#sthash.TxtZttj6.dpbs . They take Medicaid.

    This program Youth Villages in NC specifically serves:

    Hard-to-help, hard-to-place children;
    Children with emotional and behavioral problems plus co-occurring medical issues
    Children who have severe acting out behaviors
    Boys and girls, ages 7-18


    I do concur with those who said you need help, and not just any counselor will do.

    If you're interested, here's an example of a research study showing that it works:

    Use of Multisystemic Therapy to Improve Regimen Adherence Among Adolescents With Type 1 Diabetes in Chronic Poor Metabolic Control
    A randomized controlled trial

    Deborah A. Ellis, PHD1,
    Maureen A. Frey, PHD2,
    Sylvie Naar-King, PHD3,
    Thomas Templin, PHD4,
    Phillippe Cunningham, PHD5 and
    Nedim Cakan, MD3

    + Author Affiliations

    1Department of Psychiatry and Behavioral Neurosciences, Wayne State University, Detroit, Michigan
    2Children’s Hospital of Michigan, Detroit, Michigan
    3Carman and Ann Adams Department of Pediatrics, Wayne State University, Detroit, Michigan
    4School of Nursing, Wayne State University, Detroit, Michigan
    5Department of Psychiatry, Medical University of South Carolina, Charleston, South Carolina

    Address correspondence and reprint requests to Deborah A. Ellis, PhD, Department of Child Psychiatry and Psychology, Children’s Hospital of Michigan, 3901 Beaubien, Detroit, MI 48201. E-mail: dellis@med.wayne.edu


    OBJECTIVE—The aim of this study was to determine whether multisystemic therapy (MST), an intensive, home-based psychotherapy, could improve adherence and metabolic control and decrease rates of hospital utilization among adolescents with chronically poorly controlled type 1 diabetes.

    RESEARCH DESIGN AND METHODS—A randomized controlled trial was conducted with 127 adolescents with type 1 diabetes and chronically poor metabolic control (HbA1c [A1C] ≥8% for the past year) who received their diabetes care in a children’s hospital located in a major Midwestern city. Participants randomly assigned to MST received treatment for ∼6 months. Data were collected at baseline and at 7 months posttest (i.e., treatment termination). Changes in A1C adherence, as measured by semistructured interviews and blood glucose meters and hospital admissions and emergency department visits, were assessed.

    RESULTS—In intent-to-treat analyses, participation in MST was associated with significant improvements in the frequency of blood glucose testing as assessed by blood glucose meter readings (F[1,125] = 16.75, P = 0.001) and 24-h recall interviews (F[1,125] = 6.70, P = 0.011). Participants in MST also had a decreasing number of inpatient admissions, whereas the number of inpatient admissions increased for control subjects (F[1,125] = 6.25, P = 0.014). Per protocol analyses replicated intent-to-treat analyses but also showed a significant improvement in metabolic control for adolescents receiving MST compared with control subjects (F[1,114] = 4.03, P = 0.047).

    CONCLUSIONS—Intensive, home-based psychotherapy improves the frequency of blood glucose testing and metabolic control and decreases inpatient admissions among adolescents with chronically poorly controlled type 1 diabetes.

    Keep trying. If one thing doesn't work, go to a different doctor, different counselor, social worker, ER, whatever it takes - you should not have to do this alone.
  10. katerinas

    katerinas Approved members

    Apr 20, 2010
    I aggree with the above post. I don't know MST but I would definatelly recomend systemic- family therapy ASAP!!
  11. Christopher

    Christopher Approved members

    Nov 20, 2007
    I have also never heard of MST but it sounds interesting. Many children with Type 1 diabetes need to have some type of counseling to deal with the emotional issues related to this illness at some point in their life. I assume most end up with a "regular" therapist or maybe one who specializes in people with chronic illness. But if there is a specific therapy that is successful in dealing with the issues around Type 1 diabetes that would be fantastic. I wonder if you should create a specific thread titled something like "Counseling therapy for children with Type 1 diabetes" or something similar so that someone coming to this site and searching on that topic would be able to find this information easier, as opposed to it being buried in this thread. Just a thought.

    Thanks again
  12. nikki8778

    nikki8778 Approved members

    Jul 2, 2015
    Hi all!! Thank you all sooo much for your responses. I just wanted to give you an update and answer some of the questions you guys have asked. About Haley:

    1-Yes, I have her in counseling. She has been going since around March I think. He's ok. I don't see any significant improvement but I'm trying to give it time. He's just a general family counselor so he doesn't specialize in Type 1. I am going to read about this MST. I am very intrigued by this and will definately look into it.

    2-This will probably go against how most of you picture her because I think I gave the wrong impression maybe. Haley is VERY outgoing. She has tons of friends. She has a boyfriend who actually cares about her diabetes and texts me to check on her. When she is good, she's GREAT. She has a wonderful personality and if a delight to be around. She's funny and smart. She makes decent grades and has no trouble at school as far as behavior or grades go. She plays basketball and softball. She will be starting High School next month. She is not a withdrawn, anti-social kind of kid. AT ALL. She's just careless, forgetful and then lies to cover it up. OH...and LAZY!! With a capital L-A-Z-Y!! That is a huge part of her problem I think!!

    3-Do I have help from her Dad? *sigh* I think he has pretty much thrown his hands up into the air. He struggles with handling everything on his own since we have been divorced. A lot of our counseling sessions are spent dealing with her relationship with her Dad. I'm pretty positive he has Narcissistic Personality disorder. They do not get along well at all most of the time. It's just easier for him to ignore it. I can punish her at my house, then when she goes to his house, all bets are off. I've had to stop worrying about this, because it will drive me crazy, and I have zero control over it, so I have determined to just do the best I can when I can.

    4-I had a lot of help from the school last year when she was in middle school. However, she will be entering high school this year and they are pretty hands off. I plan to meet with the guidance counsellor when school is started back up to see how they handle it there.

    5-I absolutely love her endocronogist. She has not recommended anyone for therapy, but that's probably because she knows she's already going. We were very excited about the CGM, I'm not anxious to tell her about the mishap with that when we go back August 6th.

    6-You are all right about there being issues other than T1. And the whole expectations and consequences hit the nail on the head. A lot of that is my fault. I get mad then I forgive really quickly then I forget she even did wrong. I've been trying, however, to stick to my punishments. And I'm being met head on with a lot of resistance. But that was expected. She does do her own laundry. She is in charge of unloading and loading the dishwasher, and she is also required to clean her room. She also watches her younger brother and sister during the day through out the summer.

    I have another question for you all....This is very embarassing for her so I do not bring it up often, but since nobody knows her here, I feel ok about it. When her sugar is high she wets the bed. Let me rephrase that...floods the bed. And it smells HORRIBLE!! And with an A1C of 12.4, you can imagine this is more nights than not. :( Have any of you experienced this? You'd think at 15 she'd have outgrown this by now!!!

    Thank you all for all your kind words and advice.

  13. Christopher

    Christopher Approved members

    Nov 20, 2007
    I just wanted to say sorry about the bedwetting. I don't have experience with it but I know there are some here that do. I hope they will chime in. An A1c of 12.4 equates to an average bg of 309. The increased amount of sugar in the bloodstream pulls water from the muscles and can cause increased urination. I think when you get her A1c down and her average bg spends more time in range, the bedwetting issue should resolve. Good luck.
    Last edited: Jul 22, 2015

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