Now or looking back...What do you want from us ? How can we help ? Parents have to be invoved in d care in one way or another :) thank you :)
i think my mom was great. she was concerned and kept on me, but still gave me some independence as a teenager..more checked up on me i guess would be the right word. while i found it annoying at the time and we fought a lot, it was good that she was on top of me so much about my control. i may not have the "ideal" a1c level, but i do my best to keep on top of things and she does her best to help me.
as a little kid, i'm sure my teachers, friends parents, etc wished my mom was a bit less intense..but she worried about me and was a single mom, so it's understandable.
one thing i do really appreciate, was her not dwelling on my diabetes. it was never this big deal when i was growing up, it was something that as a family we dealt with but she didn't have me grow up thinking i was different by treating me different from my brother for the most part. she actually spoke out when people treated me differently. i think she gets more offended when someone thinks i have type 2 than i do!
i grew up with a girl whose mom used to(and still does, she did this with the photos of her daughter in the Maternity ICU hooked up to a feeding tube and all, when my mom ran into her a few months back after the baby was born) walk around with pictures of her daughter before she was diagnosed and after. her family and her all dwell on the fact that she has diabetes and that has caused her a lot of emotional problems(though I'm sure her family in general, since they are so fucked up, didn't help) which lead her to not doing her insulin and a lot of complications.
my mom's always been supportive but doesn't rub it in my face that i have a disease, unless i'm doing something that we both know is stupid and will hurt me. such as my drug problem, not so much an addiction, when i was 19.
My mom is the same way :/ if i make one mistake like forgetting to check my blood sugar my mom tells my im gonna loose a limb or an eye. sometimes i wish she could calm down.
My parents were fantastic. They were always concerned about my diabetes, but they let me make my own choices about it - whether or not to go on the pump, that kind of thing. They constantly asked me questions about it - "Did you do a blood sugar before dinner?" "What is your blood sugar?" "Are you low?" (If I'm acting strange.) "Could your blood sugar be high?" (If I'm not feeling well.) "Do you need to do a blood sugar?" "Do you need to change your infusion set before we leave?" Etc, etc, etc. In high school, that was REALLY annoying, and we fought about it quite a bit. But looking back, I needed them to do that. I think I would have completely lost control if they hadn't bothered to ask, or if they had commanded that I do a blood sugar rather than asking if I needed to do one. If things were going well with my diabetes, they let off a bit. If they weren't, they asked more questions. I think my biggest piece of advice for parents would be to ask the questions instead of trying to be the one in control. Instead of saying, "Do a blood sugar before you eat that," say something like, "Do you need to do a blood sugar before you eat that?" Then the kid feels like they are the one making the decision. (Hopefully they'll realize what the right answer is, lol.) Also, like Batts, they were really good about not making it the center of my life.
I have to say, i wish my parents would of done more. I think they tried to give me freedom as a teenager, but, I could of used less. When I was first diagnosed (10 y/o) my mom used to pack me a lunch with a balanced carb/ protien/ fat, and always gave me a salad and fat free milk. I may have at times thought it was wierd with such a lunch and may have been a little embarrased, but all i remember now, is loving that she did that then. My parents never really learned much or tried to look into anything themself, just listen to the docs and told me I wasnt doing good. They would tell me things like, i could die if I didn't take care of myself, but never followed up with checking up on me. Maybe I was just lazy, but i could have used more parental control. I would be persisstant...it will pay off in the end I think.
i wish that my parents would balance out with each other
my dad is calm, goes with whatever we get thrown at us, does what we need to fix it and doesn't over react. my mom is over reactive, freaks out if i am like one point above target, etc.
from talking with another diabetic family whose daughter is about my age, has d and plays hockey, i found out that her parents are exactly the same way
My parents give me almost too much freedom. They drive me to my appointments and pay for everything but I manage it entirely on my own. I think they are like that because they really trust me with my diabetes and they know that I won't misbehave with it but I wish they would be a little more concerned and involved
My dad doesn't really do anything regarding my diabetes. He pretty much ignores/forgets that I have it, which sometimes I don't appreciate (like when I didn't wake up one morning a few years ago due to extreme low blood sugar).
My mom is involved and supportive, but also lets me be independent, although not to the point where she doesn't acknowledge it at all, like my dad. The one thing that really bothers me is that my mom (and dad in the past) always seem to blame me when I go really low due to exercise. She also gets annoyed with me when I am really low and slightly combative. I wish she would act more calmly in those situations because then I wouldn't feel as guilty as I sometimes do, on top of being low!
In my opinion, the best thing that parents can do is be aware. Go to the endocrinologists appointments with your children. My mom always went to mine, and sometimes I hated it, but looking back I am glad she did. She helped me understand things when I didn't know what the doctor was telling me. But don't get too involved that you're smothering them. See that they are eating healthy and do whatever you can to show that you are interested in them being healthy.
[quote user="Dave"]
In my opinion, the best thing that parents can do is be aware. Go to the endocrinologists appointments with your children. My mom always went to mine, and sometimes I hated it, but looking back I am glad she did. She helped me understand things when I didn't know what the doctor was telling me. But don't get too involved that you're smothering them. See that they are eating healthy and do whatever you can to show that you are interested in them being healthy.
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agreed. hell my mom STILL goes to mine and i'm 22. she likes to, because my diabetes has always been part of her life and she thinks she should know what's going on with my test results and such so she can help me if i need it and any changes in my insulin doses, etc, if i need to be admited to the hospital. i like it because my endo is very by the numbers and to the point and isn't very sensitive so the few times i've gone alone i've ended up in tears after(which really means something cuz i dont cry) so it helps to have her there to ask when i'm nervous to or ask what has slipped my mind, etc.
I'm glad for you that your Mom is such a good support! Do you mind my asking, what kind of before and after pictures did your friend's mom carry around? what were they meant to demonstrate? And what do you mean by 'dwelling on her diabetes'? I am curious about this because I am type 1 too, and I've always thought my dad suddenly saw me not as me, but as his 'diabetic daughter' and I'm wondering if anyone else felt this way or saw this with other diabetic parents.
hi Jessica :) I was just reading this and just wanted to let you know my feeling on what you mentioned.I have a husband that's had type 2 for many years and my daughter now 18-got type 1 at age 12. I see my husband as just my knothead husband,ha and I sure see my daughter as just my daughter-the same as if she did or did not have type1. What I do see with them both is a condition that they need to deal with everyday.I feel it is something that we have to talk about and that may get in the way at times-but many other things do that too. I admire my daughter greatly and this mom is set on there being a cure one day and till then-I have my hopes on the AP :) Best Wishes :)
I never had any major issue with my folks when it came to diabetes; they've always been great about it. About the only minor thing I can come up with is my mom sometimes freaks out a little too much when I'm low and wants to give me more orange juice than is necessary for correction, but that's it.
I first read Dr. Bernstein's "Glucograf" book about 20 years ago. Since then I have tried everything to normalize my blood sugars. I went on the pump 14 years ago - it has helped my highs and lows and improved my quality of life but not my A1Cs.
I thought 20 years ago that Dr. Bernstein was too extreme. But in December I ate a bagel (60 grams of carb) and promptly went out of control for several days (after having had a really good week due to being on vacation and walking everywhere.) I read his 2007 book and decided to try his method. I am not doing everything but I am eating 0-6 grams of carb for breakfast and 12 each for lunch and dinner. Snacks are usually nuts or cheese. The only starch I am eating is Ry-Krisp and sometimes counting carbs in salad dressing. I am eating a lot of salad. I get to eat things like avocados and bacon.
My sugars are pretty much in the 80-150 range which is incredible for me. It has been about six weeks. The downside is that I am now incredibly sensitive to carbs: it does not matter how much I bolus if I eat more than 15 grams or so at once.
I have two frozen shoulders and have seen a marked improvement. I had had gradual improvement over the course of time but this was significantly more and only in a couple of weeks of good blood sugar. I have also lost about 8 pounds but the decreased pain and increased flexibility are the best part of the regimen.
I do not exercise a lot and am not giving up my pump. But I think certain aspects of Dr. Bernstein's regimen are worth considering. The traditional diets do not work for this Type 1.
Sincerely,
Sharon
I am a big fan of Bernstein. He recommends taking small amounts of carb and only those carbs that are absorbed slowly in you body. (You are right. His diet is rather radical with no flour, bread, no potatoes, no fruit, and only certain types of vegetables.) I have heard him described as the TALIBAN of diabetic diets because it is so strict!
BUT what works for him is his idea about how much inaccuracy we have when we eat larger amts of carbs. After all, slices of bread vary a lot in the amt of carbs, and a piece of fruit can be large or small, and can you really judge at a restaurant how much mashed potatoes you are getting by knowing that one cup is about equal to the size of your fist??; Also there is variation in how fast your body absorbs the food you eat, depending on how full your stomach is, how much fiber and fat is in your stomach, etc. And if your insulin is injected in an area where there is scar tissue, it is absorbed slowly. iSo there is inaccuracy in what we do.
He says that bread, fruit, pasta,etc go into your blood stream as fast as table sugar, and faster than the fast acting insulin boluses can manage them. He says that the ADA just gives up on this fact, and instead of saying "don't eat much bread,fruit, and pasta," it has the nerve to say, "I guess we might just as well eat some sugar when we want it. "
Mathematically, if you deal with large, inaccurate numbers of carbs, you make large mistakes in your blood sugar control If you eat small amounts of carbs , you get small mistakes. (see his comments on the law of small numbers. )
He was trained as an engineer, then had so much trouble with diabetes, that he became an MD, endocrinologist.
BUT ......... his ideas and ultra low carb diet is NOT accepted in main stream diabetic experts, and I doubt he has researched the effects his diet would have on millions of diabetics. (I hope I am doing the right thing following his diet! ) ( His diet DOES correct your cholesterol as will or better than a low chol diet. )
In short, his book is worth reading (you don't need to read about the how to test your blood sugar, and the other basic chapters) and I would consider at least making a major reduction in the amounts of fast-acting carbs we eat.
Rich.
Rich,
Dr. Bernstein's approach is interesting largely because of his history and I think he gets a number of things right (in no small part because he has a lot of experience and a brilliant mind) - that said, I had trouble with his approach to the degree that he seems to be finding ways to do battle with the body. In this regard, I think the Drs. Eades books make considerably more sense and do a wonderful job of backing their assertions with sound medical reasoning gleaned from plenty of research review and actual years in practice.
I think Dr. Bernstein is a good read for any T1 - but for me I found it better balanced with an approach similar to the likes of the Eades...
Regarding the "main stream" approach, the best worn path is not always the best one - nor does it always have the best science behind it (the Eades provide much information in this area).
Cheers!
A-D
Hi Joan. I'm so sorry to hear about your son's recent diagnosis. I hope you find some support and useful information on Juvenation. Remember - you are not alone (the 19,000 on this site alone are proof of that)!
Joan-
I'm sorry Damian and your family are having to go through this. His life will be different, but there's no reason he can't have a long, healthy life. The only thing diabetes will prevent is him joining the military.
Not sure if you're a reader, but there are a lot of great diabetes books. A couple I'd recommend starting off are:
*50 Diabetes Myths That Can Ruin Your Life; And the 50 Diabetes Truths That Can Save It by Riva Greenberg
*Think Like a Pancreas by Gary Scheiner
* The Diabetic Athlete by Sheri Colberg is great if your son plays sports
The Pink Panther book is great too. You can buy it or read it free from this link.
www.ucdenver.edu/.../UnderstandingDiabetes.aspx
Take care and let us know if you have questions. Damian might want to post on the teen forum. You might also ask your doctor/hospital about diabetic summer camps in your area. It always helped me a lot to meet other kids with D.
-Jenna
Thank you so much for all the kind words and advice. This seems to be a great site.
~joan
Tracy,
I don't have answers to many of your questions because I'm currently 18 weeks along. I will say though that I was also told that it was hospital policy to induce Type 1 Diabetics at 39 weeks. I too was not happy with this news. I have been pleading with my team to try and let me go further. I have also been a Type 1 for a long time (22 years) and am in excellent control, last A1C of 6.0.
It seems to me that being induced might cause more problems rahter than prevent them. I feel that if I am induced that I will end up having an unwanted c section due to putting the baby in stress. I understand inducing if the placenta fails or if there are other complications, however if baby is healthy why can't they stay in there until they are ready to come out?
Thank you so much for asking all of these questions, I am excited to hear what everyone has to say.
Brigid