Teens with Type 1

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Permalink Reply by Robin on May 20, 2008 at 12:49pm

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!

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Permalink Reply by Chris and Jack Lally on May 20, 2008 at 1:24pm

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

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Permalink Reply by Micky on May 20, 2008 at 1:28pm

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.

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Permalink Reply by Gwen Garza and Jordan on May 20, 2008 at 1:34pm

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

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Permalink Reply by Christi on May 20, 2008 at 2:57pm

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.

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Permalink Reply by Lisa Marie on May 20, 2008 at 4:04pm

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

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Permalink Reply by Gwen Garza and Jordan on May 21, 2008 at 4:54am

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

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Permalink Reply by Tammy on May 20, 2008 at 2:10pm

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.

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Permalink Reply by Tonyia Crebbin on May 20, 2008 at 2:20pm

Christi,
As we know teen years are tough. Throw in T1 and it almost seem incomprehensible that we will ever make it out of high school! My son is also 14 and has been diagnosed for 2.5 years. Fortunately, he is a pretty compliant kid, but I have made no bones about what complications lie ahead, if he fails to keep on top of his care. I have heard both sides of whether or not to tell your kids the complications of T1 but for us, we took the no holds barred approach...he found out quickly what those complications could and would be. But we also told him that he could live a long and very healthy life if he did take care of his T1. My best friends father has T1 and he is 70+(diagnosed at 17) and very healthy, so my son knows that there is a positive to good control.

We have also reminded our son that he will be wanting to drive one day, (too soon for me!). That driving privilege is absolutely going to be dependent on his A1C and how often he checks his glucose, always before driving. Maybe you can use this to motivate to your daughter.

I have also, not given my son total control over his diabetes. Personally, at least for us, 14 is too young to understand how to make adjustments and teens just don't think about 'later'....they live in the 'here and now'.

I still check his meter, ask him what his glucose was at school and I even check him in the am and prebolus for his breakfast. (He eats the same amount of carbs every am). I adjust rates on his pump and I adjust ratios. BUT, I always tell him my reasoning in doing so. He needs to know why things are being changed because someday, he will have to do it himself. My thought is that he will have the rest of his life to deal with his diabetes, the least I can do is help take care of it while he still lives at home.

I think keeping an open line of communication is very important. Taking some of the burden from her may help as well. Tell her you want to help her out, maybe checking in the am before she wakes up. If you know what she is going to eat, prebolus. Ask her what her glucoses have been through the day, but don't accuse if the number is bad. Just say something like "I wonder what we can do so that doesn't happen again" or "did something stressful/exciting happen today?". Sometimes highs just happen and they have absoluately no control over it. We can't fault them for that, we just need to accept it, correct the number and move on

Another thing I thought of...Does she have to go to the office to check her glucose? If so, it may be cramping her social life to have to go to the office to check her blood sugar. If it is possible, can she have access to check anywhere in the school?

Just some thoughts, Good luck,
~Tonyia

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Permalink Reply by dino on May 20, 2008 at 2:59pm

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

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Permalink Reply by Christi on May 20, 2008 at 3:04pm

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".

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Permalink Reply by dino on May 21, 2008 at 7:05am

diabeticrockstar.com

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