Teens with Type 1

My daughter was diagnosed when she was 10. She is now 14. She has never really had good numbers. She refuses to take her BG more than once a day. I even tried to pay her for taking her BG and then doubling it if they came up in a good range. Are there any ideas from other parents with teens? I come to these groups and only end up feeling worse. I feel like there is more I should be doing for her.

Christi - I just got your message that you sent to the group and I just had to respond.

My daughter is only 5 - but what you are living through is a big fear of mine.

I wish I had advice for you but all I have is well wishes and prayers. You will be in my thoughts and I’ll be watching this discussion to see what suggestions you get.

That is a difficult situation to be in - I wish you luck!

Hi Christi,
My type1 ‘D’ son is only 7, but I do feel for you. I work with diabetics and see this most often in young people. Is there anyone (nurse practioner/or psychologist) that your daughter could sit down with, and maybe discuss ways she can work her diabetes plan into her normal day. I live in PA and I know of a psychologist who specializes in kids with disabilites. I’m keeping him in my back pocket for the day my son decides to be a ‘normal’ teenager. I’d like to know there’s someone for jack(my son) to check-in with when things get tough. Ask your Endo if they offer any such services for you and your daughter. Don’t know if this helps. Maybe some other teens can help you.
Hang in there, I wish you the best,
Chris

Hi Christi, I just got your e-mail and please know that you are not alone. My daughter is 11 years old, T1 and we have had good days and bad, there was a time didn’t want to eat so she wouldn’t get a shot, it is never easy. This is a great site for support with lots of others with experience to help. Is she on the pump?? That would tell you if she was high or low, it beeps…has she seen anyone for support from the endo team? They have that kind of support available also. Sounds like you are a very supportive and loving parent and I wish I had the answer for you. Does she check her bs at school? Our nurse has kc check it every day, sometimes more. I’m not sure what your situation is or how school deals with her diabetes either. I wish you the best of luck and if I come up with any ideas I will let you know.

My son is 14 and will be 15 in August. He has been a diabetic since he was 2. He does not want me to help him with his diabetes but he is not very good at it. Last Fall he had an A!C of 14- I was shocked. They wanted to put him in the hospital. He has been able to get his A1c down to 8 but we need to go back on the 2nd of June and I am afraid to go. I think it is goign to be bad. There are days that I think he lets to pump do what ever and he does not check his sugar. He has become very good at lying about diabetes. I get tried of all the fighting so I back off and then we have sickness. Thsi mornign he was throwing up and had a 500 blood sugar. He could not go to school today becasue of it. Last night I checked him and it was 125. Who knows! I sure do not. I have tried it all. I guess sometimes they are just stuborn. I have a support group in my town and they have very similar problems. Either really high or lots of lows. They have so many hormones right now it is very difficult on them. I am just trying to keep our realstionship intake during this process. My son does not have his father in his life so it makes it hard to be everything to him. Gwen Garza - Laredo, TX

Hello Christi,
I just wanted you to know that my prayers are with you. I have a daughter who is 16 and was diagnosed at age 3. She has never had an A1c over 8 and for the past two years it has been under 7. But do not let this fool you, she still has 300 and 400’s just like anyone else she just has enough lows to counteract her highs. We have been all through the "I am sick of this, I do not care, why does God hate me, etc, etc, etc… She drives a car now and that is very scary but I have to let her grow up. The things that work the best for me is someone else talking to her. If I tell her something she doesn’t listen but if someone else tells her she will come in and say “mom did you know…”. She is great with other diabetics, she hopes to become a pediatric endo. one day. She is even trying to start up a support group in our area for type 1’s. She is great to talk to, maybe if you guys have email or myspace address she could talk to your daughter, or they could talk on the phone, write letters to each other, anything that might help. She loves to talk to other kids about what it is like to have diabetes and how important it is to take care of yourself. This year she has changed alot and discovered that maybe God doesn’t hate her, he chose her for a reason and it is to take the experiences she has been through and use them to help others. Please let me know if we can do anything to help.

Thank you Gwen. It is nice to finally talk to someone who is in the same boat. My guilt only increases when I hear from parents how wonderful their kids are doing. She does not have a pump and we live in a very small community so no support groups. Our endo comes down every three months to see the diabetic kids in the county. I have suggested she start a support group but of course anything I say is a no go. I am using her picture as my icon. As you can see she is very free spirited and she thinks she knows everything. My dad was a T1 and died at 52 after going blind in his 30’s and then having renal failure. I have seen what poor blood sugars can lead to. When I try to talk to her she just says, “I have diabetes not you, why do you care what I do with MY body.” I of course tell her how a parent loves a child more than they love themselves but she can’t understand that at her age. Thanks for your input and I hope we can keep in touch.

Christi,

I can relate to your daughter 100%.

I was diagnosed in JR high…I was a diabetic angel until high school (honeymoon phase)…then I just didn’t care. By my senior year in high school, I was eating and drinking whatever I wanted, skipping my NPH shots, and forgetting that I was diabetic. My sugars swung up and down like a see saw.

My biggest problem was alienation. I didn’t know any other diabetics…and worse, I didn’t want to know any other diabetics. I didn’t want to go to “sick” camp. I just wanted to fit in…be normal. A finger-sticking blood-checking syringe-weilding teenager doesn’t feel normal. It’s much easier to just pretend its not there.

Problem is it doesn’t go away. Problem is it gets worse if it keeps going like this.

I remember…I wouldn’t listen to anyone…not my parents, not my endo, not my realtives…when it came to my diabetes. How could they understand? How can these people give ME advise about diabetes? I remember being so annoyed when mom or dad told me to check my blood sugar. “I’m fine” was my constant response back. I felt fine at the time, but I wasn’t.

The one person I would listen to during those times was Meg. My endo made me go talk to her…she was the diabetic educator. But she was different…she was a type-1 like me. We shared stories and laughed and our sessions were great. She made me want to have better control. She was the first person that made me feel normal and diabetic at the same time.

I don’t know if your daughter knows any diabetics or talks to any diabetics at all. Honestly, she should be on tudiabetes.com or diabetesrockstar.com reading these blogs and learning from other diabetics. Interaction with others like her could be the only way.

Dino

Thank you so much. I have mentioned this site to her and hope she will join. I didn’t know about the diabeticrockstar one so I will mention that one too. We live in a very small community so it is hard for her to find someone to talk to. You do sound a lot like Savannah. I have offered someone else to talk to and she just thinks that will make her even more “different”.

We went to Children With Diabetes’ conference last summer and their teen sessions were very good. Both the sessions for the teens and the how to be a parent of a teen diabetic.

If you get the opportunity it was very good and well worth the time and money.

Here is a little example one of the teachers there talked about:

She doesn’t have to like diabetes she has to do the behaviors of care for it. What would happen if she stayed out a few hours past the time she was due home, came rolling up the front yard in a car driven by 20 something, beer cans rolling out the door as it opened, etc…?

Would there be consequences for dangerous behavior?

The test number is the test number it isn’t good or bad. I wouldn’t reward the number but she has to test and she has to respond appropriately. That is the needed behavior test & correct.

It is hard but try to separate your emotions from the deal. Focus on the behaviors, they are not negotiable.

I know it is a lot more than that, good luck.

Bennet
Your Diabetes May Vary
www.YDMV.net

Gwen,
I’m in the same boat. Sara just turned 18 and is planning to go off to France this summer and to UT Austin as a freshman this fall. We just got back from her A1C now…this second and it’s 13.5!
I’ve done so so much - as a single mom - to support her…get in there, back off, etc…sometimes the insulin doesn’t work the way we predict it will…and sometimes it’s her fault for not being more vigilant. She’s tired of being diabetic and wants a “vacation” from it. BUT…not possible! So, I am having to get ugly and tough…talking about respecting herself, being proud of what she has accomplished and having the dignity to do the right thing for herself. I don’t know if this will work either…but I’m not giving completely up either.
We are close and have been close so this ugly ugly in your face-ness I am doing will work or not. It will be her choice in the long run.
Frustrated,
Lisa Marie

Hi Christi,

You might also check out the website www.type1parents.org

Many of the parents on there ALSO have teens with D, and I’m sure that one of more of those kids would be willing to email/IM/facebook/MySpace with your daughter to give her support and encouragement.

Having been a high school teacher, I know that sometimes the voice of reason sometimes has to come from anyone EXCEPT a parent. When I was teaching, I spent a lot of my down time talking with some of my students who just needed to know that another adult cared deeply about them.

It might also be time to have her see photographs of some of the more gruesome stuff that can happen in terms of complications. I once listened to our CDE have a pretty serious sit-down conversation with a teen whose last few A1Cs had been above 10% – she definitely brought out the big guns and talked about all the things that WILL happen when no attempt is made at good glycemic management.

I agree with BadShoe, that attending a conference or perhaps a diabetic camp might be a great motivator for your daughter, and help her feel like less of an outsider.

Good luck! We’re all rooting for you.

I am also telling my son that his A1C must be in line before he will be allowed to start driving. He has very little that really motivates him. He has attend Camp for three weeks every summer since he was 5 but it works fro the month he gets home and then back to they same after that. I think they just have to find their way on thier own. We have had all of the scary things happen that would scare him straight(including death of a 18 yr old Type1 friend) but so far nothing.

Christi - you can start the support group yourself. I did that is how we got ours. Every body you meet get the phone numbrs and emails and start planning meetings together. Do give up- At our first meeting no one came. Three years later we have five families. You do not need anyones permission. You can do it yourself. Gwen Garza- Laredo, TX

My son just turned 15 and was diagnosed at 10 also. We’ve had our ups and downs with his control of his diabetes. It seems as if about once or twice a year he’ll have what we call the “diabetic meltdown”. You know how it goes “I dont want this disease anymore, why did God choose me, you don’t know what I’m going through, I hate diabetes, etc, etc.” Last year was the worst, as he wasnt testing his blood sugar at school and would come home either really high or really low. After several attempts at talking about “control” he finally said he was embarrassed to do his blood sugar test in front of his friends and that he just wanted to be “normal”. He said when he was with his friends he didn’t think about his diabetes and if he felt his blood sugar flucuate he would just ignore it. We ended up making a compromise that he would stop by the nurses office on his way to lunch so he could test in private. Sometimes he did and sometimes he didn’t. We also pulled back on some of his priveleges such as going over friends houses, or going to the movies etc. It’s a difficult line to walk because we didn’t want him to think we were punishing him for having diabetes so the way we explained it was until he showed us he was taking responsibility we loved him too much to put his health and LIFE in jeopardy. We made no bones about life-long complications but we also made no bones about the fact that the short term complications could be death.

This year has been a bit better. He still has his bad days when he “forgets” to bolus at lunch, or take his blood sugar before an exam, but he’s working at it. Between the typical teen hormones, growth spurts, and attitude :slight_smile: , we just keep telling ourselves it won’t be like this forever! Good luck to you and know you are not alone. We do the best we can!

diabeticrockstar.com

Christi –
WOW!!! This thread (advice/understanging/venting) is JUST what I’m seeking as well. My daughter – dx @ age 6 – will turn 16 next month. She has generally been a responsible caretaker of her diabetes. That said, her last A1C was over 10!!! She has recently been VERY resentful of my involvement in her self-care. She was a pumper for 6+ years and decided 2 months ago to take a “pump vacation” – in her mind this is forever! Not that she was perfect on the pump by any stretch of the imagination but, now, on a regimen of lantus and novolog her numbers are consistently above 200 :frowning:
I, too, struggle with how to deal with her when she says “you just don’t understand” or "let me handle it!"
She has attended summer camp for years and, this year, has been chosen to be a CIT (counselor in training) – it is my hope and prayer that she will come back with a renewed sense of what it means to really take care of herself.
The daily battle is getting SO old – questions about blood sugars being met with “made up numbers”, suggestions about carb counting being met with “Ieave me alone”…

All that said, being connected with other kids/teens with diabetes has made a HUGE difference. She at least has the ability to “IM” her diabetic friends (from camp) and scream about what a pain in the a… her parents are!
Now that there are so many social networks out there, maybe your daughter can hook up online with other diabetic teens. I’ll ask my daughter if she knows of any that are national. In the meantime, there’s a place for kids with diabetes here http://www.childrenwithdiabetes.com/kids/.
Hang in there – we’re all in this one together for our WONDERFUL teens who just have’nt gotten to the “ownership” phase with regard to their diabetes!
~Lynn

This brings up a good point. Having to tell your friends that you are diabetic during these years is potentially opening yourself up to a battery of ignorant questions and false judgments by your peers. I remember it vividly…

“Why do you have to prick your finger?”…“You must of eaten a lot of sugar as a kid!”…“Look Dino’s gonna inject himself with sugar!”…“Can I get diabetes from eating too much candy?”

I think most diabetics in their teens would rather talk about something else, right?

The worst part was actually being punished by my parents for being a “bad” diabetic. As a teen, that just made me want to check my sugar even less and lose control completely.

These years can be critical. I really do suggest that you parents get your teens involved somehow in these forums and groups. Otherwise, get them talking with another diabetic “mentor” somehow. There is nothing like knowing that there are others like you who deal with this ridiculous disease.

Hey Bennet, that sounds like Barbara Anderson! She’s awesome. She also co-authored a position statement for the ADA published back in 2005 called “Care of Children and Adolescents With Type 1 Diabetes”; well worth a read to get a handle on what’s been generally accepted and successful across the board.

Christi, unfortunately it sounds like your diabetes team didn’t teach continued parental involvement from the start and with 4 years of groundwork already laid a new diabetes team is in order. At a minimum you might want to print out the ADA statement and drop it on your doctor next time you see him/her.

Don’t give up - she’s worth the fight!

Hi, I will be watching this thead with much interest (my niece is 11 and I know we have to learn more to handle her teens). I would be at my wits end at the scenario you describe. You have tried paying her (which is a good motivation for a lot of young teens). So positive reinforcement did not work. I guess I would take away privileges and immediately take over as many diabetes-related tasks as I possibly could. I would again test the blood sugar, as many times a day as necessary. I would give the bolus or shot for meals/snacks. I would log the records. I would make her go to the school nurse to have BS tested and bolus at lunch. And as far as going out with friends, freedom of any kind, I would make that privilege contingent on whether she will take care of herself while out of your sight. I don’t know if that is the approved way to handle this. But what else can you do? You need to make sure you raise her into adulthood physically healthy. Even if what I have described is not emotionally healthy. And I would seek counseling immediately. I’m sure she will come around if she gets help.

My son was diagnosed April 4, 2004. He is 14 now. He also has never had good readings either. He will check maybe 3 times a day and one of those is at school where it is mandatory. On the weekends good luck. I’ve also been to the local parents meetings and was really incomfortable when none of the kids ever had high blood sugar. Their mom’s are nurses and I’m sure keep a tighter rope on them than I do. I don’t know how to make him understand what is going to happen to him in the future if he can’t get a grip on this. It’s like he’s superman and nothing can hurt him. The fuutre is too abstract for him to understand. He keeps telling me they are going to find a cure and he won’t have it anymore. He is embarrassed at school by testing. He has had a teacher make a big scene when he was getting low.

Anyone have any ideas on how to get through to him?