Type 1 long term affects

[ScottB]

My 16 year old son just got diagnosed with type 1 Saturday and actually took the news well, almost too well. What I mean is that I don't think he realizes the many long term health problems that are often associated with diabetes. I've heard horror stories about diabetics having problems with their legs, feet and eye sight and what I want to know is are these potential health problems a potential fact of life for a diabetic or are they the result of poor blood sugar control and or eating habits? I'm not trying to scare him out of his wits but if these possible health problems can be avoided, then I want him to know right now so if he does want to live a long a productive life, he'll know he can't allow himself to get lazy and instead act responsibly. It's kind of like a dentist telling you that if you don't take care of your teeth, you'll end up with a root canal and or dentures. Scott Bail

[Mom2rh]

I have been told by our endo, that those side effects are the result of poor control. Unfortunately I have seen first hand some of those, as my dad died 5 years ago from diabetes related complications.

I wouldn't think you would need to use scare tactics at this point. Diabetes is a HUGE adjustment...and I'm sure you guys will be adjusting for a long time, if you are like the rest of us. Just take it a day at a time...

[Mama Belle]

I look at it this way. The better care you take of your D, the less the chances of developing complications down the road. This does not mean that you will never get any complications if you always take perfect care of yourself. Some people who have great A1cs and wonderful control still end up developing complications.

My dad was dx'd 51 years ago, back before they had glucose meters and pumps and fancy syringes. So his control was definitely not ideal in those days. Yet, he has relatively few complications. Other folks who have had great control and have only had D for 10 years end up with complications. So either way there is some luck that plays into it. Also, it is important to realize that even though most people with D develop complications, they can tend to be more minor in nature. Microalbuminaria has a rather widespread occurrence in folks with type 1. However, often times it is very minor and can be controlled easily with meds. Retinopathy is another common one that responds well to laser surgery if caught early.

So we have all heard horror stories of people who have lost limbs or ended up on dialysis. It is my understanding that the better your control the less chance you have of developing complications like this. It doesn't mean that you won't develop complications at all, but if you do they may be much less severe. Also, I am sure there are folks walking around out there who have yet to develop any complications.

So if you want to ensure that you will develop complications down the road then a laissez-faire attitude is the best way to get there. However, for the best chances of preserving your health and longevity, good control and vigilance is key.

[selketine]

My son is FAR from being a teenager but I HIGHLY recommend taking him to the Friends for Life conference run put on by the CWD folks this summer (Orlando in July) if you can swing it. The support and education there for teens is top notch - nothing like seeing tons of kids facing the same issues you do (or will) - I would think. The teenagers have their own program - which doesn't involve sitting around memorizing carb counts - more "real world" experience while doing fun stuff (one day at MGM park - paid for my CWD sponsors). The parents get to go to great seminars too.

I don't know what to tell you about the scary stuff. If he is taking care of himself I wouldn't push it on him I guess. If he is not to "into" this whole thing at all and isn't doing what he should then you need to do something - but it is a HUGE adjustment for the whole family. Hopefully someone has some spot on advice for that.

[newatthis]

I think I can relate to your son. Only it was my 4 year old daughter being dxd.

When I was 16, everything happened to everyone else. Even though he's been dxd with this he hasn't had his time to see the realities of day to day hiccups that it requires. I call them hiccups because they are annoying, as is this disease.

When we came home from our diagnosis, I hung in there and turned on my "survival" mode and I even had the thought that "this is not so bad". THEN.....my child got so low her meter read LO. She passed out on me, out of nowhere - playing one second and passed out the next while she was with me at work. The education part of the hospital stay kicked in, used Glucagon, and the whole nine yards. Got my baby back within minutes. But all that to say is this - - - - it was THEN that I realized that the horror stories can happen to my daughter and this is definitely not something to play with. So I guess what i mean is that I can relate to your son. He knows he's been diagnosed, he's probably learned a little enough to hang in there with his blood sugars, but he probably hasn't experienced something happening to a point where he realizes that the everyday hiccups have to be done or else you are putting yourself at risk, in the near and far future.

I don't look forward to the day when my daughter is in the position of taking care of herself like that. Right now, she's under my belt and she has no say so. It's a scary thought but just like everything else, I guess he's going to have to figure things out as he goes. And he will. I know I have.

[Momof4gr8kids]

I've read the stats about all of these issues, and I know that they can happen. My husband was dx'd with type 1 about 25 years ago. He has only had some minor eye problems that were recent, and not bad enough that there was anything the doc could do. They corrected on their own. He hasn't maintained perfect control for these 25 years, in fact in his teens he was quite rebelious.

The stats for eye damage of some sort say that within 20 years of being dx'd a type 1 diabetic will have eye damage of some sort. My husband, who wasn't in perfect control made it almost 25 years.

Some say genes are part of it, along with good control. There is a man I know of that has been dx'd for 61 years and has very few minor complications.

Some of the tech that we have they didn't have 20 years ago, and even if they did it wasn't used the same way. People that were diagnosed 20 years ago do not have the advancements that we have with our kids. I don't think most of those stats that predict like that can go off of the last 20 years acurately. So throw most of it out the window. Also if you are reading the JDRF, or ADA, or any other foundation that is out for money....they will make it seem worse then it is. They want those donations, and the sadder the better for them.

If your son tests, and takes care of himself he could possibley bypass many complications. However I wouldn't tell him all of this in a scary way. Sometimes adding preasure like that can make a person feel like if they are going to be ill, or die anyhow they might as well have fun doing it....

[ScottB]

Granted all of the above that I mentioned may be considered worst case scenario, but being this is new to us and are still learning, and we can't help but be "jumpy". So far our son seems to be adapting well, in fact he gave himself his very first insulin injections when he was in the ER, it's just that I want to make sure he stays diligent because a routine can get boring and laziness can set in. He's even developed a sense of humor about it. He's got a buddy who's real paranoid about needles and shots so he gave himself an injection in front of him, pretending to be in serious pain as he inserted the needle ...... his friend about came unglued :)

[LantusFiend]

I was seventeen when I was diagnosed last year, and I knew the long term complications of diabetes. I know a woman who went blind from diabetes, and my friend's professor has had both legs amputated because of diabetes. I don't like when people talk as if complications only happen if don't take care of yourself. They can happen to all diabetics. Staying out of DKA is in and of itself proof that I take care of myself.

[megan'smom]

Megan was dianosed 1 1/2 years ago and it still seems very new. The first week, I babied her--she didn't know why! I guess she didn't understand the indepth details of Diabetes. But I saw that movie Ray-about Ray Charles- and his mother taught him to be self sufficient and that in the long run, even though it's sad, no one will feel sorry for him and she taught him how to survive with this "set of cards". I kinda liked that...it just stuck. Megan went to a Diabetes camp for a week, and learned that she wasn't the only one in the world who needed shots. She even learned how to give herself shots 6 months after she was diagnosed!! I've found that if the Diabetes diet and lifestyle are kept in a postive light, then things don't seem so bad for the kids....Then you cry a little at night after they've gone to bed, thankful that it's just diabetes and not something that could be a whole lot worse.

[OSUMom]

As a parent of a young adult diagnosed less than a year ago, I constantly want to tell my son the seriousness of this and sometimes I do but I try to be really careful in what I say. In the beginning there is so much to learn. It's overwhelming, and no doubt is for your teenager. Take it one day at a time. Burn out is a real concern too.

Just recently my son's BG is really high at college. I mention he should check his ketones. He tells me he will - but is he? Well he hasn't yet. Not much I can do but ask again. :rolleyes:

I think with the older kids we just need to support, support, and support some more. Think about it - they really want to live a long life themselves so in the long run want to take care of themselves and will in the process absorb all this information. It just will take some time. Your teenager most likely is not verbalizing it, but is scared to no end right now at what this means for his daily life, his social life, and the longevity of his life. That's a heck of a lot to have to deal with for these kids.

Sending positive thoughts and prayers to you and your family. :cwds:

[ScottB]

So far there hasn't been any emotional breakdowns though it was hard for me to get focussed when I returned to work on Tuesday. I'm not sure if the ER were expecting more of an emotional response from us or not when they told us the news, maybe it was how well our son took in stride but basically I took the point of view that life had just dealt us a bad hand of cards how ever the "game" is still in play which means I can't waste time feeling sorry for myself and instead must come up with a plan. At that time I knew very little about diabetes but what I did know was that it was still possible for him to live a long and productive life. That is where it starts to get overwhelming for my wife and I because now we're scrambling to learn more but keep our emotions under control so we can stay focussed so we as parents can do everything we can to insure our son has a healthy life. Maybe the long term affects are simply a twist of fate and can happen regardless of how diligent a person is, however if there is something that can be done to minimize that possibility, then we want to know. Thanks to all of you for your info. Scott Bail

[Ellen]

I feel (and much of the literature has shown) it's counterproductive to use scare tactics as a means to motivate teens or others to control their diabetes. It's far more productive and beneficial to praise efforts, acknowledge the challenges and difficulties, have the family work as a team to support the person with diabetes, and allow the person all the room in the world to vent about his/her feelings surrounding living with diabetes 24/7/365. Notice what your son does right and acknowledge it with sincerity. I'm a firm believe that catching your child doing well, works miracles (compared to pointing out the flaws). Another important aspect of living with diabetes is having choices. If it's difficult to establish a rapport with one pediatric endocrinologist, switch to another. Similarly if one insulin plan doesn't work for that person, ask for a change. Offer a different meter, pump, syringe, pen, etc. Almost everyone appreciates having a choice.

Some get depressed on anniversary dates. We celebrate by giving our son a nice gift for all his efforts. It's not a reward for having diabetes, nor for having target blood glucose numbers. It's simply our way of saying we notice how hard you work - checking blood sugar, taking insulin, checking for ketones, doing the myriad of calculations day in day out etc....all it means to live with diabetes, and we salute your efforts. Some families celebrate everyone's efforts because it truly "takes a village"...

One of the best pieces of advice I ever received was from Dr. Richard Rubin. He told the audience at a FFL conference, there is one and only one response to give your child when (s)he tells you his/her blood glucose is high. "THANK YOU FOR CHECKING. " Thereafter you can troubleshoot together to bring the blood sugar down safely towards target.

This is a FABULOUS article which teaches us not to judge, label, shame etc. and to maintain family communication: http://www.diabetes.ca/Section_About/children.asp . I've read it many times.

[OSUMom]

We're coming up on my son's one year anniversary of diagnosis. I'm so proud of him I get teary-eyed immediately just thinking about how well he's done off on his own to college. Anyway, I like the idea of not really a celebration but a reward for a job well done with such a difficult year. How do you that do something like this handle it with kids who don't have diabetes. I already see my other son feeling different. He has a single kidney and asthma which is serious and we haven't had the year of attention like this year with my son with Type I. In fact my other son even said how come you don't wear a shirt that supports kids with single kidneys (like the JDRF shirt I wear)? :eek: Yikes. I'm slightly concerned how I would handle a reward situation with having another child with challenges also that we haven't handled in the same way because it's been a slightly different situation. Any thoughts anyone?

Also, Scott, my son and my husband took the diagnosis and ran with it - I on the other hand visibly in tears grieved. Everyone handles it differently. When I tear up still, my son tells me "mom, I'm fine - really!" Sounds like you all are doing a great job. Take care. :cwds:

[Jeff]

There is growing evidence that kids diagnosed after home glucose monitoring have a very different future than kids diagnosed before.

One recent study looked at the incidence of kidney disease, which has always been a very bad thing in people with type 1 diabetes. The data on kids now is incredibly positive. For kids diagnosed very young -- age 0-4 -- who were followed for up to 23 years, there was no nephropathy -- none. The incidence rate was just over 2% for those who were diagnosed in their teens, and just over 1% for those diagnosed from ages 5-9. This is a stunning decline from decades earlier in which these kids, once adults, would have had roughly a 50% incidence.

Dramatically reduced rates of all complications are now the norm.

The take away is that the stories of "Aunt Eutha" having complications from diabetes are decidedly not what our kids will experience -- provided that they take care of themselves. The future of our kids is very bright.

[ScottB]

I absolutely agree that scare tactics don't fly, however knowing the facts both good and bad I feel are a must. Any time we discuss "facts of life" and I don't mean just sex either we don't sugar coat things, we instead give it to them straight. For example we've always taught our boys to always treat others with respect and kindness even if they know they'll probably never see that person again. If they see someone who needs help, don't be afraid to lend a hand and so on, at the same time however they know that regardless how kind they are, there are people who will take advantage of their kindness and they'll get burnt. This has happened to them and it was a bitter pill to swallow but at the same time they've also seen the positive responses that were a result of their positive and kind attitude and when added all up, the good responses far out weigh the bad and they remain positive. I better stop there because both our boys still make us smile, laugh and proud and if you get me talking about them, you'll have a proud pop who wont shut up.

Basically I don't want my son to have a see no evil, hear no evil, speak no evil attitude about his condition. I simply want him to be as well informed as he can so IF any of these long term affects appear, he'll have the attitude to do what he can to be able to deal with it.

I'm not sure of having any anniversary celebrations at least not just yet because he's already told us to stop worrying so much about him and that he doesn't want anyone to feel sorry for him. From his point of view his future maybe a bit more complicated than planned but his long term goals still remain the same and he just wants to keep moving to make them happen and any pampering or fussing is to him nothing but a distraction.

[Hollyb]

My son didn't want to do anything special at one year either. He just wants to get on with his life!

Personally, I don't want my son at 15 to be burdened with visions of blindness and leg amputations -- especially since the odds are good that these kids will not have the same rate of complications as previous generations. He does know that out of control blood sugar over time leads to serious complications, and that good control dramatically decreases the risk. But I feel that even for teens who handle diabetes really well, the potential to get overwhelmed, overburdened and depressed is always there -- and THAT will lead to giving up on self-care. So we try to stress instead that good, careful control is the thing that will allow him to stay healathy and live his life the way he wants to.

I think the other thing to be aware of is that the teen years (especially post-honeymoon) are one of the hardest times in your life to keep your BGs under control. So a conscientious teen could be really worrying about complications, based on a couple of years of up and down numbers, without that long term perspective.

[Emma'sDad]

Hi Scott, hope this story makes you feel better. My little girl was diagnosed almost 2 years ago, but her grandfather (my dad) was diagnosed when he was 12-13 years old. Back then D control was inexistant. He's 56 now and is in good health. He started BG monitoring with one of the first BG monitors available to public back in the late 80s early 90s. Has had a few complications along the way (pre-BG monitoring) but since then it's been smooth sailing and he doesn't even do Carb Counting.

I too have heard those stories about the legs and stuff, but as somebody said, it's caused by poor control or neglect. You need to teach your boy from day 1 the importance of caring for his D.