effects-complications of D in children who've had it for a while...

Hello,

This may be a depressing thread, but I wanted to know from some of the parents with children who have had D for a while to let us know about your complications.

The organisation that may be supplying us with a hypo dog was telling me about a few of the other D patients that have dogs. One was diagnosed just 2 years ago and she is 24 now. She has to go on a kidney dialysis every week now and has had her eyes lasered twice. I don't think that she is taking good care of herself, though...

I'm scared, but I do need to face reality, I suppose.

Thanks.

 

Maybe I'm naive, but it's not something I spend a lot of time worrying about. We are doing our best to make sure Lia is as healthy as possible right now and her blood sugars (overall!) are at a decent level. We have so many options these days for treatment that our kids should be better off than previous generations. And while many of those do have complications, many don't. Or if they do, they are still able to live a good life.

My worry is that Lia will one day rebel and not take good care of herself which could lead to complications. Or that for some reason later on she will not have access to health and life insurance etc. She has ADHD and may have some learning disabilities (we've just started on this journey) and I worry about her going on to college, getting a good job with health insurance, life insurance etc. That will be especially important for her with D. Sigh.

I think that *serious* of complications at such a young age (24) are either due to some very bad genetics or very poor care.

But as I said, I could be naive here.

 

I do think about this daily, Although my son is only 12 I worry about his quality of life as an adult. Will he get a good job with insurance that will cover his D supplies. Will his children have D. I can just pray that he will take good care of himself as he grows into a man and hopefully there won't be any complications. We know 3 men in our area that have died in the last two years from D. Let me add that they didn't take care of themselves and they drank alcohol a lot.I guess it comes down to if you don't take good care of yourself you have a much higher risk of having complications.My son is going to live with me forever. LOL if only we could protect them from all that is coming.

 

I may be in denial, also, because I try not to think about those things. I also believe that we are living in a time that D care is constantly changing for the better. My main concern is will Cameron have adequate health insurance and life insurance and will he be able to find someone who will want to marry him with D. Luckily he's only 8 and right now he has every intention of living with me forever - LOL!

 

Kathy, I just read your post and saw that you said the same thing about Chase living with you forever - LOL!!!!

 

That's a thought about Rohan living with us forever! I love it! Maybe if he wants, he can live next door, or I can buy a house with two separate living spaces.

I don't mean to obsess about this, it's not why I asked. I am just wondering about the reality of D. Since Rohan has been diagnosed so young, I really wonder about the quality of his life when he is older. I mean, next year will I have to get his eyes lasered? Will he have so many hypos that his brain will be affected and he won't be able to go to university? Am I living in a bubble thinking that controlling his BG is the only way to go? Is there more I can do?

On the other hand, I know that someone is going to going to come up with a cure very soon. So, when I start worrying like this, I just try and take a few deep breaths and say to myself: "One day at a time...."

Ah...the joys of D...:cwds:

 

I think all of us at one time or another has thought about the "future" and been afraid for our child. The only thing we can do is watch what they eat, give the correct amt of insulin and make sure they are getting enough exercise - and darn it - I want to make it all better!!

I do have an adult friend who is Type 1 - she's currently 35 and was dx at 7yrs. No complications yet, she is doing great! She has 2 wonderful kids and is living a very nice life... She says she thinks that exercise has helped her stay so healthy..

It's hard to find peace with "doing your best" - because maybe I should be doing "more" - is that possible?! I can tell you there isn't anything I wouldn't do for my kids and right now I'm doing all I can to help my little man - somedays I feel good about it all and somedays I feel like I need to do more. I just figure that D picked the wrong mom to mess with!

 

I have these thoughts exactly.

My dad died too early from complications from T1D. But I don't think his control was that great. We can only teach our kids to do the best they can based on current treatment options. And my son will never live alone. I will make sure of that...

 

I doubt the complications of diabetes would show up for quite awhile (if ever) depending on the care he gets and gives himself. Certainly you should not expect complications next year or in 10 years. It does happen that kids dx'd when they are younger might have an issue with something when in their teen years. I'm not sure that is always due to bad care - it could be the luck of the genetics. I think there is a mom here with a son who is having kidney issues and he is like 12 yrs old. But they are able to well control the problem. Also the kids who are that age now did not generally have access to the better insulins and pumps that we have.

He should grow up as healthy for the most part as his peers.

 

I too try NOT to think about the future except keeping him healthy so he HAS one. Side note-Chris always says he's gonna live at home forever so he never has to give himself a shot Isn't that sad---I know its just a 7 yr olds way of dealing with D). He never thought he's do the finger pokes in the begining either now he's been doing them for 3 plus months. I just tell him when he's ready we will go thru it all till he tries the shot on his own.
And Christina (Caspi)~~ Wanted to send a "WAY TO GO" shout out to Cam for doing his own shot! That is HUGE!! Take care all- Thx god I am finally getting over my bronchitis ,its posed to be 80 today and I want to enjoy the sunshine~~Jennifer

 

I have days when I don't think about it at all and days when it makes me want to cry. Colby was only 10 months at diagnosis, and when I asked at the hospital if that meant more complications later on they basically said that the longer you live with it, the more likely it is...On the other hand, I LOVE meeting healthy adult type 1 diabetics. In the dark days at the beginning of diagnosis when we were still in the hospital I remember meeting an 18 year old who was diagnosed when he was 3 and it made me so happy to see him so tall and strong-looking. I know it's not really logical, because while I think a lot of it is good control I also think some of it's the luck of the draw. In any case, I try not to think about it too much but it's always in the back of my mind.
I'm glad this thread was started because it's good to acknowledge our fears. I just wish they weren't rational fears- instead of worrying about this wouldn't you love to be on a different message board right now posting about how you're really stressed that your healthy 2 year old won't wear dresses or is afraid of Santa Claus?

 

I would guess she was definitely not taking care of herself!!

My Endo has a quote: Diabetes is not the leading cause of blindness, kidney disease and amputations; poorly managed diabetes is.

I have a good friend who has had T1D for 33 years. The ONLY complication she's had is laser surgery on her eyes due to teenage rebellion and sustaining an A1C of 13 for a year or so. She's never had ANY other problems; in fact, she just had a nerve function test, bone density test and all the yearly bloodwork for cholesterol and kidney function--all normal.

I have another friend who was diagnosed at age 3. We went to elementary and jr high school together. She's 38 now and a physician, with NO complications, save for laser surgery once. She reminded me that she started out on pork insulin and didn't have a meter till late high school, so never knew or treated her blood sugar level until then.

Our CDE's son is 19 or 20 now and was diagnosed at age 4. He's had ZERO complications. He's away at college but still maintains an A1C of around 7, so that helps.

I don't think about complications too much. I do fret when Emily's blood sugar is above 200 and we work to bring it down quickly. We also try very hard to keep her A1C in the 6's. I think all that we parents here on this board are doing for our children will go a LONG way toward preventing complications.

The 10-year DCCT study demonstrated that intensive insulin therapy and maintaining an A1C of less than 7% can reduce complications by up to 75%, and that study was done with old insulins--NOT with Lantus, Levemir and/or Log. They are in the process of repeating the study with newer insulins, I'm told. It will be interesting to see preliminary results.

Finally, the advances in diabetes management and technology will only continue to improve and allow our kids to live longer, healthier lives with fewer (if any) complications than those who have lived before us. Let's count our blessings!

 

You know I think I am in some sort of denial, but I tend not to think of what it will be like when he gets older because I believe they will either find a cure or make managing it so much easier by the time he is much older.

 

Melissa, that's what I really loved about attending Family Camp for children with diabetes last year in our area. All of the camp counselors were college students on break with T1D; the young men were mostly muscular studs (it's a very physical camp!) and the women were all beautiful young ladies with healthy bodies! I realized in that moment how scared I was for Emily--that she would have stunted growth, or somehow be weird or different as an adult. Seeing what all these college kids did and do on a daily basis gave me so much relief!

 

ahh, the good ol' days... LOL.

 

That's such a good point about the camps! When we were first diagnosed I was very wary of stuff like this because I wanted Colby to feel like he was just like everybody else, but the more time goes by the more I'm starting to see the value in things like camps and associations. I still have a few years to think about it (here in Spain they start at 6) but I'm becoming convinced that it's a really good idea...

 

I think a lot of the complications are part genetics and part control.

I can tell you that I've had T1 for 28 yrs going on 29 real soon. I have had no complications at all. No eye bleeds whatsoever (I get my eyes checked annually), have never spilled protein in my urine, have complete feeling down to the tips of my toes, my cholesterol is perfect (my doc wishes he had mine), my blood pressure is fine.

My control has not been perfect, especially in the early years. I was 11 when diagnosed and went through the tumultuous teen years being hospitalized several times for highs and lows. I didn't get my first blood glucose machine until I was 19. Back then they hospitalized you to make changes to your insulin levels.

In today's D world we have much better tools and knowledge to control our blood sugar and thats what I hold onto for my son!

I do know other D's who are not as fortunate as me, but I know others who are.

And why would you not marry someone who has D - aren't we all the most loveable people around?!

 

My daughter has been dx'd for just over a year with no complications.

My husband has been dx'd for 25 years and has only had a minor eye issue. It was so minor that there was nothing to do about it. When he went back in it had corrected itself, like the doc said it would.

With all of the tools we have today complications are not as often, and there is also a genetic factor that some believe plays a heavy roll in it.

I have to tell you. There is a man I have met on another D forum. He is 67, and has been T1 since he was 6, that is 61 years. This man I am telling you about only has minor complications. His story has really helped me. Back then they didn't have b/g meters. They didn't have disposable syringes. Not many doctors even knew what it was, and a lot of people still died without treatment, and dx.

 

Our Endo and CDE practically forced us to attend, we didn't really want to go! I thought it would be a bunch of sickly people--I honestly did not know what to expect (we were way wrong!). We were only 2 months into the diagnosis at the time. They told us that in their 22 years of experience working together, the kids who attend D camps do far better in their teen years than those who do not attend. Take that for what it's worth, but Brent Michaels (who has T1D) of the 80's hair band Poison agrees (OK, yeah, the 80's were my decade! ).

While most of the people there were managing T1D, the camp was otherwise a 'normal' camp with hiking, swimming, organized sports and such. It made us realize that T1D did not have to hold her back in any way. It also helped HER to meet many other girls her age who were T1D, and to hang out with 18-21 year old college girls with T1D who were pretty and cool. Diabetes was treated as a normal part of everyday life there; everyone tested before meals, before and after sports, and at least once in the night. Emily saw kids deal with highs and lows, sites falling out, and other annoying things that come with D and she realized she was not alone.

Anyway, we are only going back again this year because we felt it was so helpful to her. AND we met several other families locally whom we socialize with now.

 

I worry a lot about whether or not my daughter will have good health insurance and financial means to take care of her diabetes as she grows into an adult. She will be going off to college in a couple years and I know how hard it is at that age in trying to establish yourself a career, etc. I can only imagine what kind of a struggle it may be with an expensive chronic illness such as diabetes. Trying to live on your own, going to college and then starting a new job is hard enough financially without having diabetes on top of it.