I know what my 12-year old is going through is probably his "age", but I don't know what to do anymore...His blood sugars have been all over the board but mostly high...I sit him down every time and try to figure out "why". But he usually denies eating something without pumping, but if I dig deep enough, his answer is usually that he "forgot"...He "forgot" to pump his cookies...He "forgot" to pump his breakfast...He "forgot" to test his blood sugar before he went to bed...etc. He was diagnosed 5 years ago...so how could he "forget"? And I can't help but wonder, is he in denial? Is anyone else going through this?
Yes, I go through similar conversations with my daughter. She is now 13 and was diagnosed at 10. She won't go near a pump. She's quite independent and mostly takes care of it on her own. But I always feel like I'm asking the same questions, "what were your levels, how much insulin did you take etc.. And yes, she has forgot from time to time to take her insulin and test. My daughter's favorite saying is "I know mom." I asked my daughter just the other day how it is that she forgets to test when she's been doing it for 3 years? She told me its such daily routine for her that she often forgets if she's tested right after she's done it. I guess it all blends in.
She doesn't take insulin at school, and is sometimes on the higher side by the time she gets home. I've asked her to test after school, before her snack, and she almost always forgets. Now I've added it to her chore check list. It's helped, but it's not perfect.
My daughter is almost 13 and was dxd four years ago. She rarely "forgets" to bolus her pump. But, as her parent, I remain very involved in her meal planning. We work together to count her carbs correctly, pre-bolus for meals, and take into consideration any exercise, etc. The times when she forgets to bolus are usually because she is high (over 160). My advice to you is to get more involved and ask to see your child's pump to make sure all the meals are being covered properly. As long as my daghter's numbers are in range, she is more focused and responsible. The higher she gets, the more forgetful she becomes. Stay as involved as possible but still teach them to take responsibility for themselves. I'm not sure abou the denial thing, but certainly that could be a part of it.
My husband and I know what your going threw. Our son is 14 and was diagnosed 6 years ago this past Christmas. He always has the same response " I forgot". We have had a lot of issues with him eating without pumping insulin. We were worned by the doctors that he would go threw a rebellion stage but we still were not prepared for it. I think a part of it is denial but they also get tired of this disease. I know that its hard for my son, he gets mad that he has to check or take insulin and other kids don't. I'm sorry that your also going threw this, but it is nice to know we aren't alone.
My son will be turning 16 in March. The following month will be his 2 year anniversary. We have seen it all I hope. We have had the arguments and the frustrations and have done everything we can to be supportive and even then food gets eaten without insulin, he runs high and will give a false number on occassion when asked what his number is.
I am not looking for advice - in fact I really don't want any. I don't want to hear how about diabetes camp (yes he has gone, therapy (yes he goes etc). I just wanted to let you know your not alone.
I have talked to so many other T1 parents in groups and find that although we now face many of the same challenges there are things that are different. I found that parents who had children diagnosed early in life will not go thu many of the things that parents of teens who were diagnosed as teens go thru. There is a lot of anger for a teen who has lived without watching their blood levels into their teen years and then their world changes.
As parents we have seen the smiling pictures on the literature, we have been there and many times have taken the brunt of the anger full force. The smiling pictures are gone, the "my kid is amazing" stuff has passed, the A1C's scare us and we feel powerless because we have read all the books, talked to the parents other T1, been to the suppot groups and retreats and consulted with the endo countless times.
The advice from the endo team - be patient - we have but patience has its limits.
I guess what I am trying to say is that past the smiling pictures, past the positive words and past the speeches is the dirty part of diabetes you see - the part where the child you love just get sick of having to stick his finger, tired of inserting the infusion and just tired of having to have diabetes.
I have heard the "I forgot" and have well past that. Sometimes its just "I don't care with little attempt to hide the fact that he has eaten and forgot insulin.
They don't forget they just don't want to feel the sting of the testing kit. As parents we have tested ourselves to see what it feels like - we smile with pride and tell our children " I get it" but we will never get it unless we do it 5-7 times a day for seven days a week for 365 days a year and for the rest of our lives.
ITs hard - we will wait it out. For those who are there I would love to hear from you.
Thanks everyone for your insights. This age is so difficult. At least I'm not alone!
Jack had a bad day yesterday...we had to change his site but he wanted nothing to do with it. He even disconnected, threw his pump at his dad and barricaded himself in his room so we couldn't get in. All I could hear in his room was him sobbing. He finally let me in, but that was about 2 hours later. I really think he was just exhausted. He finally let me put his site in which was good because he was high. (He is so lean that the only place his pump site can go is on his backside and he needs us to change it, unfortunately.) I have the name of a therapist as I think it is time he sees because nothing I say seems to help and he's absolutely right... I don't know what he's going through. God I wish I did!
I want to start by saying my son is 5. I may have an idea of what you all are going thru, but I don't KNOW it. I only wanted to add one insight or perspective that maybe I share closer to your child than to you. Because when your child is young, the parent is 100% responsible for the D-care.
So I know what it is like to have learned the routine of d-care and follow it day in and day out for 19 mos. And you know what? sometimes you do actually forget. (And I don't even have the reason that any of it hurts me). You do it so much, you get the test kit and then something distracts you and then your kid starts eating. And you don't actually remember until sometime toward the end of the meal when you're ready to give insulin. Or someone brings something else out to eat right after the pump bolus and so you let your D-child have it and forget to give insulin for it. I would say it maybe happens 1 time a week. (One of each, forget to test and forget to bolus).
Maybe that seems like a lot to you, but I just know how I would feel if someone who I loved was asking me in a frustrated, incredulous (yelling?) tone, "how could you forget? *where I would feel it implied* 'you stupid moron!" I would feel like crap. I would l feel like I let that person, who I love very much, down. And that would make me feel even worse about having this crappy disease where I have to do a 'TEST' at least 6 times a day to see 'how good am I doing?' and I get a 'bad' number about half the time (or more). That I can't seem to get perfect, no matter how much I work at it and so why should I try?
Obviously, I understand that you can't give your kid a pass if they are forgetting multiple times a day. But I just want to say to be VERY careful to be realistic in your expectations of remembering - esp. because I hope as an adult and parent that I'm better at remembering regular day to day stuff than I was as a teenager. (I'm sure I would have regularly left my head at home if it wasn't attached to my body.) Sometimes you do just forget.
I am in the same boat...my daughter is 13. She was diagnosed just over a year ago. The first year, she handled everything so well! I was truly impressed by how mature she was accepting everything.
This year has been the complete opposite! Around September of 2010, everything went downhill. She doesn't want a pump, so we aren't dealing with anything to do with that, but she doesn't want to take Lantus, she says it burns. She doesn't want to take shots anymore or check her numbers. She will go for a couple of days without Lantus completely and just small amounts of Novolog. She tries to eat no carbs and drink plenty of water and excercise. Then she won't feel good and she'll go back to taking her shots and checking her numbers for a few weeks. It's a cycle...
She has been hospitalized and I thought that would scare her but it didn't have that affect at all...she hates all doctors, counselors, talking about diabetes... She even will say that she just doesn't want to live if it is going to be like this for the rest of her life! That is the scariest thing for me.
She did love camp and can't wait to go again this year.
I haven't been able to find any support groups for me or her, not that she would go, but I was happy to find Juvenation! I can't get her to join, but I'm hoping still. I think this would be a good support for her.
I have come to the realization that I have to let her handle it and accept it herself. She is very stubborn and I have to pick my fights carefully. I gently try to lead her in the right direction, but like she tells me all the time, "You don't know what it feels like!" And I don't. So I will be here for her and hope and pray that there is not physical damage done.
Juvenation lets me know that we are not alone and that is somewhat of a relief, especially when I am feeling like the worlds worst mother...
My daughter is 13 as well and I go through many of the same things as you. She's right...I have no idea what it feels like to be her each day. I wish I could go through it for her but I can't. All I can do is try to be there for her when she's willing to let me. I just wanted to let you know that my daughter is joined on Juvenation and she really enjoys it. There's this whole community for people exactly like them (teenage girls dealing with teenage girl stuff AND diabetes). Maybe if you let your daughter know that she doesn't have to talk to you online that would help. No offense, but my daughter doesn't want to talk to me on here either! She gets enough of that at home. Let her know that there are tons of girls her age online talking about the stuff girls talk about with some diabetes talk thrown in here & there. My daughter really likes getting on here & seeing that she's not alone. Hope this helps.
Keith - I am still waiting it out. My daughter is 19, diagnosed 10 years ago. It has been a long 10 years! She is a very independent child and immediately wante d to learn everything there was to know about diabetes. She did great in the beginning and then the teen years hit. She has been hospitalized I believe 6 times. Sometimes I hear "I forgot", but mostly I hear "I'm sick of this""you dont' understand" "I'm depressed" "It's not fair", etc. We have tried counseling, we have tried being very involved to backing off, we have gone from not punishing her for non-compliance to punishing her. It mostly feels like a no win situation.
I agree that there is no way for us to completely understand unless we get the diagnosis ourselves. It's easy to say "How could you forget?" or "It's really not that bad", but to them it is. We recently changed from pediatrics to the adult program. It's been interesting. The peds team was always so supportive and loving and never really got on her about "not managing". The adult program is not so supportive, but maybe that is a good thing. They have been very blunt, very to the point, and they always put the ball in her court.
It's extremely frustrating to sit back and watch what feels like self destruction, but I do believe that many, many people go through this phase and come out ok. I will continue to pray, I will continue to support her as best I can. Finding support to see us through these difficult years is a God send.
New to the group. Your posting sounds like my life. Daughter is 15 and diagnosed 11 months ago. She is mad like your son. Doesn't like to test. Her big complaint is "it's not fair". Any one out there have advice for the parents of newly diagnosed teenagers?
My daughter is almost 13 and was diag at 10. Everything you guys say is what goes on in our house every day! I am very involved in Casie's care ( as much as she hates it!) . It is funny my husband and I was talking to a friend today and we were saying it is like we have two daughters in Casie. In the everyday dealings with her, there is the teen issue Casie and then there is the diabetes issue Casie. Sometimes we get lucky and only have to deal with the teen issues or the diabetes issues, but when we have to deal with both at the same time run for the hills it is not pretty! I don't know what to do to help her, I just try to take a deep breath, sometimes walk away and do the best I can. But I can tell you sometime when we go for the 3 month check, and they bring in the A1c number I just hold my breath and feel like I failed her yet again! The think that I think saves me is sites like this where I can see we are doing the best we can do at that paticular moment.
I think the longer a child has to deal w/ diabetes, the easier it is for denial to set in. My daughter used to be very compliant, took great pride in her independence and we worked well as a team. Puberty hit, and numbers shot up and from that point until now (she is 14) it has been a slippery slope w/ her consistency and responsibility level regarding management. Every child/teen has a different temperament level which directly affects their compliance, and for us, that "spirited" child has now translated into a rebellious teen. It isn't as simple for us as just staying involved. I am constantly having to ask, "did you do your pre-meal, how many carbs, did you bolus, its been three days: time to change your set, etc". In our case, these gentle reminders infuriate my daughter and make her more angry with us and w/ the situation. Parental involvement and support is great, but when your teen is rejecting that support and further rebelling as a result, it is extremely stressful on the household. We have a wonderful therapist that we are now working with, and I feel hope. A child with Diabetes may handle it one way at 5 or 10 years old, and then may very differently present itself within that same child at 14 or 15. Just as our children shift in and out of developmental phases, so with it brings a re-invented version of physical and emotional fluctuations surrounding Diabetes. We are just trying to hold onto our hope, and not give up on teaching her to fight the good fight.
Keith, Im right there with you - I got tears in my eyes...... I feel so bad they have to deal with this junk the rest of their lives.
My son is 14 and has T1 for a year and a half, he does pretty good for the most part but is so sick of having to always take care of this crappy disease. How many years of trying his best to manage this and still having a roller coaster of numbers and not the A1C we are trying for can he take?
Does anyone find that because of the puberty thing (crazy hormone surges) and the numbers being so drastic (Alec can go from 45 to over 300 for no apparent reason) the kids feel like they can't control it anyway so why bother?
It makes me feel horrible that none of us can really help eachother...right? Crazy thing is though...just knowing you are all out there and you know exactly how I feel and your children are like carbon copies of my 16yo daughter does help me! And so thanks everybody. The last few days and nights, since joining Juvenation, I've been able to use some of your stories to help keep my own fears and my anxiety at bay. I can remind myself that I'm not alone in this, I'm not alone in this, I'm not alone in this. In the almost 4 years since her diagnosis I've never been able to find a group like you all.
Now if I can just get my daughter to join! I'm confident she would find many friends.