My 9 year old diagnosed May 20th 2010

Hi Folks,

I keep hearing bad news from people I know that have heard about my daughter's diabetes. Today someone toldme their dad died at age 50 from it. 

Doctors have told us that if we do a good job controlling her blood sugar she will not have complications.Reading these forums I see people that seem to control well but still have lots of complications like kidney damage. This scares the heck out of me. Like any dad I want my girl to have a happy healthy life and to be able to have children if she chooses. Now I am wondering if she is condemned to a life of complications and poor health even if she controls her sugar levels well. How likely are her children to get it too?

Feeling discouraged tonight 


I don't think there is any way to guarantee the avoidance of complications, because it depends on the genes. The Joslin Diabetes Center in Boston has records of several hundred individuals who are alive today and have had T1 diabetes for more than 50 years. I happen to be one of them. I became T1 at the age of 10, and my current age is 77. About two years ago my log of my bicycle mileage, accumulated over about 30 years, surpassed 100,000 miles. I graduated from Swarthmore College with a BS in electrical engineering, and worked for GE and Honeywell as a computer systems engineer. So, except for my diabetes genes, I think the rest of my genes have been pretty good. I hope your daughter will be as fortunate, in her own way, as I have been.


Terry, I was diagnosed in February 2010 and I am 43 yrs old. I am sorry you feel discouraged and hope tomorrow will be better for you and your daughter. Like anything else there are good stories and bad. Try to keep focused on the good. A positive attitude for both of you will go a long way. It is challenging and I have not done it for the long haul but many people have. She has a better chance of success if she keeps her levels controlled. Always remember many people like the bad stories because they remember those better. Keep in touch on this site if you need to chat. Good luck.

I understand and am scared right along with you!  All I know is to do the best we can as parents without smothering them.  Help them to live as normal a life as possible and keep them active.  Our doctor says that is one of the best things we can do.  We encourage as much physical activity as possible.....and pray ALOT!!

Oh, I just love all the people who think they're qualified to make you feel doom and gloom about diabetes.  Everyone's got a story or something they overheard about diabetes.  And they're all pretty much full of it.  You have no idea how many people have, for instance, insisted to me that I'm not "supposed" to eat sugar.  People hear old, outdated info and they just buy into it. 

Did the person who died at age 50 have T1 or T2?  How did he die?  Was he low?  Or did he died from complications of highs, like kidney or liver failure, or heart disease?  If so, it probably wasn't very sudden -- he'd been not taking care of himself (and being sick) for a long time. 

If your daughter takes good care of herself, her risk of serious complications is low.  Get her a pump and a continuous glucometer and she'll be practically as good as new!

I was diagnosed February 13th and it was the scariest feeling in the world, but I've had it for 4 months now and it's not half as scary as i thought and i'm finding that I can handle it more and more everyday. Just make sure that your daughter eats properly, tests her bg if she doesn't feel well and treat accordingly and takes her insulin and she'll be fine, she'll still have bad days but the good days will outweigh them significantly.

Terry.....Living with diabetes can be TOUGH!  There's no question about that.  As long as your daughter and you try to keep blood sugars as normal as possible, things will be fine.  There will be days when normal blood sugars are way out there, but you just have to live and learn.  When she gets sick (cold or flu), you make adjustments.  When she gets stressed, you make adjustments.  When she exercises, you make learn something new every day.  Just try to take life one day at a time.  I have had T1 for 25 years now and I am beginning to see some complications.  When I was younger, I chose to not really take my disease seriously.  Now I am starting to see the ramifications of it all.  Make it a goal to check blood sugars often, especially when you are doing something out of the exercising!  There is a forum on here about the likelihood of children of diabetics getting diabetes themselves.  

Remember....take it one day at a time!  Hang in there!:)

Hey Terry,

I am also new to this. My son was dianosed 5 Aug 09, 6 days short of his 12th birthday. The best advice we recieved as parents was to learn our strong points and share the duties. I was strong in numbers so I keep up with all the number portions and ordering of supplies. My wife is strong on the social and does all of that part.

I am very proud of our son. He does not shy away from diabetes and freely shares any imformation they want to know. when he got his pump he was excited to become a "cyborg".  He does anything he wants to went on a canoe trip down the Buffalo river. His sisters call him thier half brother cause part of does't work.

Long term health again from others is do the best you can and keep learning because so much new knowlege has come out in the last 20 years and JDRF is doing so much great work no telling what the future holds. Be positive.


Hi Terry,

My dad told me he had many of the same concerns when I was diagnosed at age 2 and a half.  But here I am at age 26, happy, in good health, living a fullfilling life and still in one piece!  :)

Good control is really the key.  She will have bad days (we all do) and things will get tough at times, but rather than getting discouraged by these experiences, encourage her to learn from them.  You really do have to take things one day at a time, keep moving forward and learn ways to adapt in the process.  My parents changed their eating habits when I was diagnosed, so we were all in it together, which made following a diet much easier for me.  If you do your best to stay positive, it should increase her confidence and make her want to be in good health.

You, your family and your daughter can get through this!!

It's easy to let our imaginations get away from us wondering about the "what ifs." Your daughter is only 9 years old, she has a lot of years ahead of her - much too long to be worrying about the "what ifs." Like everything else in life, diabetes isn't always going to be predictable, and just like everything else in life, you put your best foot forward, give it everything you have, and be satisfied knowing you did your best. Diabetes-related complications aren't a guarantee. Working in a hospital and being in the healthcare field, I've seen what uncontrolled blood sugars can do to you. I've also seen what can happen even with well-controlled blood sugars.

Our lives are what we make of them. We can choose to live in fear of the uncertainty of the future, or we can choose to wake up each morning and greet a new day. Some days are better than others - they can't all be perfect. Diabetes has a big learning curve, for both you and your daughter. In recent months of educating newly diagnosed diabetics and their parents, it's always harder on the parents.

Your daughter has the same opportunities in life as every other child her age. Don't feel sorry for her. Don't cry for her. She hasn't lost anything, she hasn't received a death sentence, and she isn't going anywhere any time soon. She has more responsibilities than most her age, but this is now a part of her and a part of her life. Diabetes will form a routine and will fall into place, just like brushing her teeth in the morning or putting on her PJs before going to bed. Don't let diabetes hold her back - we can all tell you, it hasn't stopped us from doing anything.

I consider myself to be like other 25 year olds. I went to college, I'm working on a career, I enjoy socializing with my friends... My daily routine just has a few unique steps in it :o) Don't waste your worries on diabetes - she'll give you plenty of other things to worry about when she hits the teenage years. :o)

Very well said, C.  I'm not sure I can add anything, other than - there are plenty of us T1's who are thriving.  Hard work and dedication to these new challenges, on both hers and your parts, are critical.  She can do it, and so can you.  We're all here to help you along the way, any time you need us.

To answer your last question: 

According to the American Diabetes Association website , which is where this quote is from:

In general, if you are a man with type 1 diabetes, the odds of your child getting diabetes are 1 in 17. If you are a woman with type 1 diabetes and your child was born before you were 25, your child's risk is 1 in 25; if your child was born after you turned 25, your child's risk is 1 in 100.

Your child's risk is doubled if you developed diabetes before age 11. If both you and your partner have type 1 diabetes, the risk is between 1 in 10 and 1 in 4.

There is an exception to these numbers. About 1 in every 7 people with type 1 diabetes has a condition called type 2 polyglandular autoimmune syndrome.

In addition to having diabetes, these people also have thyroid disease and a poorly working adrenal gland. Some also have other immune system disorders. If you have this syndrome, your child's risk of getting the syndrome including type 1 diabetes is 1 in 2.

It is scary... with care it is manageable... still I just keep praying for a CURE!

Hey Terry-

A very scary situation your family is dealing with right now...

My 14 year old son was diagnosed in April of this year...    We have found that the more we empower our son to control his diabetes himself, the more it will become a part of his daily life.  He has had a few rough days (after the novelty of it wore off) when he finally realized that it wasn't going to go away.  We started giving him the control to make some of the decisions, and although it's very difficult to give up that control we realized that it's his life and his body.  We watch over him carefully and allow him to guide the direction.  This has given him the responsibility right from the beginning and when you think about it-who needs to take more control and gain all the knowledge they can???  Your child...  Learn with them and guide them and they will help make smart decisions regarding their diabetes.  Her body will take good care of her,  if your daughter learns to take good care of her body. 

My son felt very smothered and "nagged" when we asked so many questions about his blood sugars.  We learned to let him do most everything with eyes on supervision.  If your daughter is anything like our son, she can do much more than you might she might be capable of.  It's very hard to give that up as a parent, but trust me-she can do it..   Good luck to you and your family...


i know i am still young but i have learned a lot since i was diagnosed 8 years ago! i am now 14!  I often feel discouraged  as well but i know that there is always the future to look forward too! There are a lot of ppl out there raising a LOTTTTTTTTTTTTTTT of money! i am soo grateful that i have a insulin pump! you should look into it! it is completely amazing.. i feel so much more independent!  I have gone from taking 6-13 shots a day to changing a cite every 3 days! what a life saver..

Wow Catherine, 

6 to 13 shots per day? I don't think my girl ever gets more than 5 or 6. It depends on how hungry she is and how much she wants to eat. When the doctor says we can get a pump we will for sure. The only shot that is unpleasant is the Lantus. We are much more concerned with her long term health. One would hope that good numbers will guarantee good health.


You have been logging your miles too? I am a lousy record keeper. well maybe not lousy but I certainly could be better. This will get me going.

Thanks for all the info. I have read every response and learned from each. Isn't it fascinating that the age of the mother so strongly affects the chances of the baby getting diabetes? 

I am convinced my daughter's trigger is cow's milk. All of our kids were sensetive to it but she got unexplained rashes when she managed to sneak milk products. Sometimes the rashes were so bad they would bleed. She was on soy milk until she started school and then she drank cow's milk at school and at friends' houses. My wife did not have milk or soy the entire time she nursed our kids because it would make them sick to their stomaches. All our kids nursed 18 months and never had formula. 

Allergists say she does not have a milk allergy. It is a reaction they couldn't explain.  I really am suspicious that is was the cow's milk. She has had a couple lows and each time was after having milk. Isn't that weird? Her sugar drops instead of rising about an hour and a half after having milk. Ice cream did it and so does skim milk.

There are no guarantees in life, whether or not you're diabetic.

I'm pretty newly diagnosed (at 30), and the complications are scary... But let me tell you, I've had far more Type 1 diabetics come forth to offer support and show me that they have few or no complications.  I was terrified at first, but now I feel quite confident that I can be healthy.  In fact, I think I'll be taking better care of myself than I would have without this diagnosis, so maybe it helped in some way.

Also, she's been diagnosed at a pretty great time in the history of diabetes treatment.  No cure yet, but the control is better than ever... and I have no doubt they'll at least have an "artificial pancreas" well before your daughter is old enough to develop complications!

You're doing her a world of good by helping treat her now, and by teaching her how to take care of herself.  This is hard enough for me to handle as an adult treating myself, so I can only imagine what it must be like for a parent to treating his child.  :(  I have such respect for you!

Hi Terry

One of the things parents deal with (as everyone on this site will attest) are people who have no idea about diabetes and relay poor information, obsolute information and just do not have all facts. I have a brother in law who used to tell me about this person or that person with diabetes so I would ask "did he have type 1 or Type 2, When was he diagnosed, what medcines is he on etc. The answers were obviously "I don't know" and that is when I say "right - you don't know - you can't put every person with diabetes the same catagory.

Yes, we have people here who have had diabetes for years (yes even over 50) and those who struggle (like my 15 year old son). 

The person who told their dad died at age 50 also needed to tell you when he was diagnosed -was it early in life or a few years ago, was he type one or type 2, did he manage his diabetes well, was he seeing his endo, was he on the pump or MDI, if he was type 2 was he exercising and watching his diet etc.

Those are the questions that need to be answered. Yes, there are complications to those who do not manage well and over a long period of time and you should be aware of them.  We need to pay attention to those things so we can better manage the here and now. 

ITs hard enough being a parent without the know it all's in our life.

Next time it might happen then ask those questions, there might have been a very valid reason and it more than likely had to do with long term poor management. .

Or, you can be direct like I have learned to be and tell them " those stories don't do anyone good - if you know anyone else please do not tell me">

Best of luck - the best way to avoid all those issues is to care and the fact that your hear looking for answers shows you do.


I'm 51, 27years w/ T1, son is 6, T1 for 16months, he is doing fantastic.   Diabetes is a life style, and yours has just changed.  Just "Do it". 

My 2 cents = pumps are okay, pumps w/ CGM (Dexcom) are fantastic!

Very good move so far, using this site to tap into experience.