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Dealing with the Diagnosis of Diabetes
Debbie Butler, Social Worker with the Joslin Diabetes Center in Boston, hosted a chat about Helping Teens Cope With And Manage Their Diabetes on Wednesday, April 13, 2005.
Moderator (server) Wed Apr 13 08:00:00 PM EDT 2005
Our chat about Helping Teens Cope With And Manage Their Diabetes starts at 9pm Eastern.
Looking forward to this chat :-)
hello
is anyone here?
Hi Sandy
Our chat about Helping Teens Cope With And Manage Their Diabetes starts in 10 min in the 'Support' room.
sandy are you here
hi ellen
hi sweetie
wow Ellen, Zack has had diabetes for a long time, how is he doing?
Sandy, are you still involved in Patricia's diabetes care? Sweetie, do your parents still stay involved in your diabetes care or do you manage it mostly on your own?
Zack's doing very well with the diabetes...I'm very grateful..
Good evening everyone.
Tonight's chat is hosted by Debbie Butler, who is the moderator for the Joslin Diabetes Center Discussion Boards for Teens
Hi Jeff and everyone in the chat room!
yes, she began pumping about 4 months after diagnosis, and we love it...now she is a lot more independant, but every few days we write down (or download) her meter and pump and go over it together to see if we can make changes...so far no "teen turmoil"
Hi Jeff.
Hi Debbie. Thanks for taking the time to chat with us tonight about helping teens cope with diagnosis and care.
she does all of her bolusing, and blood glucose checking..although I do remind her sometimes
Hi Debbie
and I will do 2/3am checks if I feel its needed
how about you and Zack?
Debbie, one of the challenges we all face is helping our teens to remember to check their blood sugars when they're out with friends. Do you have any "tricks of the trade" that have worked for your teens?
can any one help me?
hi
I help with reminding and we take turns prefilling cartridges. We still order all the diabetes supplies. I need to know what to do the last year at home to transition him to become fully independent when he goes away to college in a year.
One trick I have suggested to some teens is to set an alarm on their cell phone when they think they should be checking their blood sugar. Has anyone had any luck with that?
allyson throws a fit whn i ask her to take out her own things. im trying to get her to be responsible.
I set the alarm on Patricia's pump for blood sugar checks...it has been very successful
Ellen are you nervous your son wont be able to manage his diabetes in college?
she finds the alarm so annoying that it works
Debbie, that's a good idea. I'll mention it to Marissa
Sandy that is a great suggestion too, to set the alarm on the pump.
i can barely handle her at 10 cant imagine what shell be like in a few years
I am nervous that a certain amount of the control we have now, will slip. I think infusion sets will not be changed unless bg is very high
Ellen, I think you do lose some control when your child goes off to college, but in general I think a lot of the teens and young adults do much better than their parents expected when they go off to college.
the thing I find most slipping as Patricia gets older is the writing things down...bg's carbs, insulin doses...does anyone else have this? we now download, but I think it seems to be the "first step" in forgetting
Hi
Hi Linda.
Sandy, don't tell Patricia, but we don't write anything down at all.
i know that it desnt seem like a big deal, but sometimes I feel that by downloading for her I have set the precedent that it is okay for her to forget to do that, and that is not something I want
Sandy I hear that same complaint from a lot of parents. I think logging though is a great thing for parents to help with. I know it is a pain for everyone but if the parents are helping it is one less thing for the teen to do, plus then you know what is going on with blood sugars.
Marissa rarely writes down anything. I usually do it, but have had my right wrist in a cast for 2 weeks, so I'm letting it slide. COuld be an interesting endo. visit next week!
good linda, that makes me feel better
I saw Dr. Laffel is suggesting sending text messages to kids on their cell phones to remind them to check - Zack would NOT appreciate receiving that message.
Sorry to hear about your cast Brenda!
Ellen, I like that idea, but our kids could still ignore us and not test.
Ellen, it is an interesting idea about the text messages reminders, but I know that would not work for every teen.
that was Ellen...but we don't write anything down either :-(
What my girls say when we do meter check is that "of course I tested, the meter just didn't record it!"
I am 14 and on the pump and I think that getting a text message on my phone reminding me to give my insulin would be great!1
Debbie, what do we do if our kids decide they have "burnout" and don't want to do much of anything with respect to their diabets care?
Right now the girls are on a 4 times a day minimum, show me your meter every night and if you've done what you're supposed to do then you can drive the next day to school
Chelsea I am glad you said that. I think we just have to be creative because some ideas work well for some teens and not so well for others.
Brenda that is a great question about burnout. I think one of the best ways to help with burnout in teens, is for parents to take over as many of the diabetes tasks as possible - like BG checks, insulin administration, logging etc when you are with the teens.
Ellen, gues I need to learn how to send text mgs on my cell phone.
Brenda I also see a lot of teens for counseling that are burned out from diabetes management. We are lucky at the Joslin Clinic yto have mental health professionals that understand diabetes.
Elizabeth was averaging about 10 tests a day until about 3-4 months ago. Now we're lucky if she does 4 aday. her pump alarms to remind her but she ignores it. She hasn't kept a written log in years, and just relies on the meter/pump memory. I'm really concerned because she's going away to an intensive dance program for 4 weeks this summer and I obviously won't be there to bug her about it.
Brenda, Timmy will be happy to text message Marissa for you.
Elizabeth's mom, will there be a nurse at the camp to help with diabetes management?
i sometimes feel like we are asking too much of Patricia, she has been doing 10-12 BG tests a day...I know that this is good in terms of results, adjusting basals, etc...but at the same time, does anyone ever consider that maybe it could be leading to the burnout? would it be unreasonable to cut back to try and prevent? might it help?
ellen i read the article it was interesting thanks
Sandy you raised a good question. I think that would be a good thing to talk to Patricia's health care team about. Sometimes I think we all forgot to focus on all of the positive things the teens are doing right, vs what more they could be doing.
hello
There will be a doctor and nurses available 24 hours. However, I don't know about being involved in her diabetes managemet. Until recently she's been very responsible and independent in diabetes management.
I think heaping praise on our children and catching them doing the best they can goes a long way in developing their self-esteem about the diabetes.
I often feel bad for Andrew having to check his bg so often. I've compromised in that if things are going smoothly with the bg's, then 4-6 times a day is plenty but if things start changing (highs/lows), then it's time to check more frequently until we've got a handle on it.
our D team is very tight in terms of management, etc...sometimes I feel it is a little bit too tight, I know that good control is SO important, but last visit P's A1C was 6.7 and we were told "to make some changes to work on that"...I like to focus on the positives rather then the negatives, to try and help her lead the most normal life possible
Ellen I totally agree with you. As you all know this is a very tiring disease to manage and I am so impressed with all of the teens I meet with every day - even the ones that are struggling with this.
I also think that having friends with diabetes (from camp, support groups, etc) has helped Patricia tremendously..she doesn't feel so alone in everything she does
6.7 and they wanted to make cahnges thats a good range,
I found that 13 was about the "brain dropping our of their head" stage...I really wonder what happens to their brains. Normally really responsible kids just change overnight
!
Debbie, I read an abstract that you co-authored and the conclusion was CONCLUSION: Although glycemic control was not significantly worse in midpubertal and post-pubertal patients, family involvement for DM management and adherence to BGM were lower in late adolescence. Interventions to optimize glycemic control may include minimizing DM-specific conflict, increasing BGM frequency, and implementing CSII use.
You didn't mention if continued family involvement made a difference during this stage.
I have a 10yr old checking 10-15 times a day and A1C is 10.4....What do I do?
allyson is going to summer diabetes day camp for one wek hopefully. and she has been writing leters to some other little girls with diabetes. seems to be helping her a little bit
I've found that with Andrew too, Linda.
unsuremother, what are you doing with the information of all those blood sugar checks?
allys last was 7.1- thats where the doctor liked her. she thought 6 was too low for her
Elizabeth was testing so much, because of her level of physical activity. She dances 5-6 days a week for about 3 hours a day. I'm also frutrated because we've recently switched to the DeltecCozmo Pump/Cozmonitor system, with the meter attached to the pump, so it's harder for me to even just check on how she's doing, like I used to.
Ellen, all of the research that I have helped with, in addition to my clinical work, always shows that the more family involvement the better off the child with diabetes does.
Good idea Jen
ellen give to internallist
soccerballetmom, does Elizabeth disconnect when she showers? That's a good time to download the info.
Elizabeth's mom thats what P's uses too...we use the downloading features and go over the numbers together, it has helped us both learn!
Soccerballetmom, can you download the pump data and the BG data from her pump occasionally. I believe there is software that allows you to download both.
Unsuremother have you met with a dietian recently? Maybe that would help.
R the pumps really good for children who really do not understand their bodies?
When I check Marissa's BG before bed and see that she needs a bols, I check the meter history to see what she had bolused since dinner. She's often asleep when I do this.
Ellen I love your idea of downloading the pump when your kids are in the shower.
I do on monthly bases
Sandy, when the D team asked you to improve things with the 6.7 A1C - did you tell them you're doing a great job and would like to hear the positives from them? Sometimes you have to give the "medical professionals" a reality check.
we se the nurse and dietician every 6 months and then the doctor every 6 months alternating. so we are basically there evry 3 months
Yes, we do download it, but it's such a hassle to do that we usually do it only once a week and that just doesn't seem often enough. I never thought to just do it when she's in the shower, GREAT IDEA!
Unsuremother, the pump is a great piece of technology but it is not for everyone. If the parent will be doing all of the pump programming it does not matter if the child doesnt understand their body. We have some toddlers on the pump. But the child has to be willing to be connected to the pump.
i think i will call the nurse tomorrow allyson has been runing high again. she must be growing agian
i was kind of just in shock...I was willing to listen to their suggestions, and they did have some valid ones, after we left the office I emailed the nurse practicioner and asked her to use "positive reinforcemet" with P....this is in very good range, but here are some things you could do to make it even better. she understood completely, apologized, and we agreed in the future positive is better
Soccerballet mom, maybe you should see how it goes downloading 2 or 3 times a week and see if that helps.
unsure, how long has Meg had diabetes?
Sandy I am so glad you were able to speak up to your child's health care team and suggest they focus on the positive more.
I understand Debbie,I would do the programming no problem but can she over-ride the program?
Brenda 3yrs
Brenda H., That's one of the things that I really like about the Cozmo combo, it automatically acounts for "insulin on board".
my daughters mnedical team always tells me im doing god with her but sometimnes i dont think i am its very hard
hey doing a ter paper on diabetes and i need some info
Unsuremother there are locks on the insulin pumps to prevent that from happening.
So at mealtime what do I do?I cannot be with her 24/7
I will start downloading a couple of times a week while she's in the shower.
That's a feature we really don't use. Think I like more control and the ability to bolus after grazing and whatever.
Jen managing diabetes during the teen years is the most difficult time to manage diabetes - because of hormones and growth spurts in addition to the developmental issues related to puberty.
What do teens most often complain about Debbie, that parents can change to make things better?
What kind of insulins are everyones kids on?
shes only 10 but already developing
hms, look at other pages on this annd other sites. there's tons of info on-line
my daughter is on nph humalog and lantus
Unsuremother, if you are going to put your child on the pump, she will need insulin at all meals and most snacks - so there would always have to be an adult that is willing to program insulin based on her blood sugar and what she is eating. School nurses help with this when the kids are in school.
sorry for typos, typing with one hand is a pain! Never break your wrist.
Unsuremother, I volunteer in the school's clinic. And the school nurse would help test and bolus another child in the school.
she had a period of a month where her numbers were perfect. i think the month was longets ive sen her go with good numbers. now shes sky high again. off the meter 2 nights in a row
Hey is anyone out there that will talk with me?
No school nurses where I am from
Ellen the teens complain to me about "nagging" from their parents - so a lot of times I negotiate with parents what they are allowed to say and when. They also seem to hate logging which as I mentionned earlier is a great thing for parents to help with.
Debbie, do you have any prepared handouts for teens about drugs and alcohol and diabetes?
hhhhhhhhhhhhhheeeeeeeeeeeeeeeeeeeeeeeeeellllllllllllllllllllllllllllllllllllooooooooooooooooooooooooooooooo
Unsuremother, if there is not a school nurse, then a school personel staff can be trained to help with diabetes management. I know a lot of school are cutting school nurse positions which is so unfortunate.
Jen I am from Canada and Lantus is not approved for children under 17...I have my daughter on the same but Dr.s up here have no guidelines on lantus
do you ever liste to tha young people???????
Debbie, when the teens complain about parent's nagging...what in particular do they complain the most about?
the alcohol is somehting that I worry about too..has anyone with older children encountered any issues involving alcohol and diabetes?
hms, this is a scheduled event, try another source until this is over, have a guest speakder from now until 10 i think
Sorry i mean listen
Ellen, I actually wrote an article about substance use issues and their effect on diabetes management. It was in Diabetes Self Management. I can send you a copy if you want.
i also would like to know about alcohol and diabetes
hmsrob24: we are having a conversation in this room. Look around the site, start at Diabestes Basics--it's on the home page.
hmsrob24 I think you will learn a lot about diabetes from reading this transcript
I'd like that Debbie.
Debbie, send to me too please
well i tryed chatting at other ties but...........
times sorry the m key sticks
I am trying to learn also rob...good ideas
Unsuremother, All of Elizabeth's teachers (including PE, Art, Music, etc.) received general training on diabetes, as well as on how to use glucacon. Then a few days-1 week before school starts, we meet with her main teacher as well as some of the office staff about how to use her meter and pump (even though she's been doing it on her own for some time).
hmsrob24 ... please move on or you will be unable to post here again
Thanx Debbie
Debbie, which issue was it in?
Linda, there is not one specific thing that teens complain about when they tell me about their parents "nagging." But I guess some examples would be - "they think I dont know what I am doing," "I never do anything right," "they dont trust be to go out with my friends, etc"
I have had a little resitance with teachers
Debbie, I think yhose particular complaints could come from any teen, noy just those with diabetes.
Kim and Ellen - if you e-mail me your address I will send you a copy. It was in the Sept./Oct. 2002 issue.
Brenda I agree. Having a teen is never easy, and then having a teen with diabetes gives you even more to worry about.
We have been lucky with schools, except for the first 6 wks. of Kindergarten. Marissa graduates from high scool in June.
That's useful information Debbie. So, do you think the bottom line is to just not nag at them and hope for the best? Also, acknowledge when they do something right and try not to harp on them when they don't?
We need your email address Debbie
Debbie, my email is jewel@cwdmail.com if you would send me a copy too please.
Someone asked about alcohol and diabetes. This is something that your health care team should go over with all of your teens. Teens need to know that if they are drinking that are at an increased risk of having a low blood sugar (which is the opposite of what a lot of people think).
we have never had any real problems with teachers, always a few who were a little nervous to trust Patricia on her own- if she really knew what she was doing, etc
I guess I've been lucky and spoiled to have such an accomodating school system (Elizabeth currently does everything she needs to do right at her desk in class, since that's what's most comfortable for her.)
sure it, since alcohol is carbs, that's weird
I can send you copies of the article if you e-mail your mailing address to me at work. My e-mail address is debbie.butler@joslin.harvard.edu
our HCT asked Patricia if she drank (she is still in the 9th grade and does not- at least not to my knowledge) bt they gave us the info anyways, we were told it shoots bg up through the roof and brings it down low naturally, depending on what you are drinking...is this correct?
or does it just go low without the high?
Kim, it is kind of complicated. It is basically because when a person drinks the liver is busy with processing the alcohol.
ummm hi i had a question-personal
Do low carb beers make a differnce? I wouldn't yhink so sine they also have the alcohol to affect the liver. By the way, I don't really drink, esp. beer.
Sandy, it does depend on what you are drinking. Most commonly someone is at risk of a low blood sugar, but it can sometimes raise blood sugars. Nothing is ever easy with diabetes.
How do you teach parents to learn to let go?
do u think anyone will ever be able to feel the pain that we as diabetics feel and understand what we go thru if they r not a diabetic
Brenda I dont think low carb beers would make a difference but I am not sure. Good question.
Can diabetics manage responsible drinking, or does it affect the blood sugars too erratically
It is supposedly better to have a bourbon than a daiquiri or pina colada. The latter are really high in carbs.
Silverado12 I dont think anyone can truly understand what it is like to have diabetes unless you have it yourself. Have you told anyone how you are feeling?
Ellen, I never want parents to let go - because I want parents to stay involved as long as possible, but gradually I do think teens need some independence - but gradually.
yea-my friends, but none seem to understand
I was thinking the opposite..that a sweet alchohol drink would be better than alcohol straight up because the carbs would help to keep the bg up but I don't really know.
As I uderstand it, the alcohol affects the liver, preventing it from releasing glucose whenyou are low. So, you can be in serious trouble if you have a low when drinking. Most people urge few drinks, if any, but make sure you eat at the same time.
Kim, people with diabetes can drink responsibly. I think it is important for everyone to discuss this with their diabetes health care team.
Brenda I agree. It is always safer to eat while drinking (even if you dont have diabetes.)
when we were chatting with our D team about the issue of drinking, it was definately something I felt like Patricia could do responsible...when she is MUCH older
But, how involved should parents be when their child is 20?
Silverado12, have you spoke to a parent or your diabetes health care team about how you are feeling?
although I am glad she has all the info now, you never know what might come up and decisions she may make
silverado, do you go to any support groups, or have you tried to find other kids with diabetes in your area? Or a chat room for teens?
ya-but i cant relate to them-i need someone younger that understands-thats y i came here,but id like to see my friends here online-not just chat-u know?
Brenda I think it just depends on the 20 yr old. Even when your kids go off to college, I think it is great if parents can still help with picking up prescriptions, setting up doctor's visits, and just being available by phone when your kids need someone to talk to.
Silverado, what kiund of pain are you talking about? physical or emotional?
support groups are hard to find where i live. we were in one but it ended cause the kids went off to college mostly
my friend has diabetes-but we dont talk much-it just seems like none of my close friends understand-like the ones ive known forever
emotional
Silverado12 - I moderate discussion boards for teens on the Joslin website. Maybe you should check them out:
http://joslin.org/managing/pedi_discussion.shtml
I hope I have been keeping up with all of the questions and comments. I know we only have about 5 minutes left. Have I missed anyone's questions?
ok-thnx debbie and brenda, and, and, everyone..lol
Silverado, you should talk to ur parents about coming to our web site conference in July. The kids who meet there often stay in touch and try to visit each other throughout the rest of the year. Even the siblings get involved and they have a great understanding of your pain.
You are really doing an OUTSTANDING job answering questions Debbie and it's so appreciated!
Silverado have you also considered going to diabetes camp in the summer?
My husban is also type 1 (since 1982) and has been an awful example (testing a couple of times a week, if that; several complications, etc.) I would have thought it would have made Elizabeth realize the importance of good care.
Ellen thanks!
does diabetes affect the menstrual cycle by affecting other hormones?
and yes i have debbie-bearskin meadows
Soccerballetmom, as you all know teens think that nothing will ever happen to them - that is why talking about diabetes complications does not usually work to motivate teens to take care of themselves.
Silverado - some of the camps have winter camps too which is a great idea so there are 2 times of the year that teens get to meet with other teens with diabetes.
I look at it as the cycle affectig the diabetes as we see hihgher bgsa the week ot two before and often need to double or more insulin.
Kim I know that hormones effect blood sugars, if that is what you are asking. Some females need to change their insulin dosing before they get their period and/or during their period.
yes, i've noticed that, too!
aargh, many typos again, sorry
no, was wondering if could affect cycle duration or frequency
Kim definitely talk to your daughter's health care team about this issue.
thanks for your time, Debbie. will look forward to your article, have emailed your work address
How do you recognize "depression" in a teen, vs. just a moody teen?
Debbie, on behalf of CWD, thanks for taking time to be with us this evening.
Kim I am not sure if it can effect cyle duration or frequency, I have never heard of that but you should still ask your child's doctor.
Debbie, Thanks for your help tonight.
That's a good ?, Ellen. You have two teens; I'm sure one of them is moody, then the other, etc.
Ellen, I think the signs to look for if you are worried that your teen is depressed is changes in their school grades, changes in sleeping, changes in appetite, noticing that they dont enjoy the things that they used to enjoy, anger, irritability. If you are worried about your daughter being depressed I would encourage that you take her to a counselor.
Thanks everyone for inviting me. Good luck! You all sound like very supportive parents and thanks to the teens that logged on too. Good night!
Thanks so much Debbie. We hope to see you again here. I'm sure we could ask questions all night long
I attended a wonderful meeting of diabetes professionals in the community today and one of the featured speakers spoke on diabetes and depression ....the emotional aspects of diabetes are often ignored at the routine ped endo visits.
does anyone have trouble getting their kids to take their shots in places other than the stomach?
Jeanna, Elizabeth over uses sites all the time. She'll refuse to use anything other than her thigh. Finally, we'll convince her to use her stomach, then after a short time she'll decide not to use any other sites and we have to then coax her into a new area. The cycle just continue like that.
Jeanna, my son has been reluctant to change things over the years...bribery helped - of course we chose to look at it as a "reward system" ;-)
Good Night!
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Last Updated: Sunday April 17, 2005 15:22:17
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