So my 5 year old niece was diagnosed with Type I juvenile diabetes on Monday night. Her mom has always been very aware of and sensitive to illness in her family and she took Julia in for a blood test when she felt she was a little too hyper and wasnt getting enough sleep. Her blood sugar level was ~450 and she has been in hospital ever since, they expect her to get out this weekend but since Julia is only 38 #, they are having a slow time figuring out the correct insulin dosage for her.
The doctors were impressed and congratulated Steph on figuring it out before she went into a diabetic coma but that is a fairly minor part of the problem.
Steph and Yiannis (the parents) are basically not taking this well AT ALL. I’m looking for people that have had this and how they have handled it. Yiannis in particular is falling apart and only looking at the negatives. I can tell him I know that people can live with this condition successfully but I would like to hear from Dopers who have done so and what hurdles they faced.
My husband was diagnosed in October of 1975 at the tender age of 3. That made this past October 27 years of living with type one diabetes.
Overall his health is good he has good organ function and no sign of neuropathy in his extremities so far. He has had some problems with retinopathy but because he is very good about seeing his doctors regularly it was caught early and it has been mostly corrected with laser surgery.
Although I can’t really speak to the problems his parents faced I can say that it is possible to live a full life with insulin dependant diabetes with a few concessions to the disease.
And for a little glimmer of hope for the future of those with diabetes here’s a little info on a study we are watching very closely.
Hi–my husband posts here and told me about this thread. He’s a Type I and our son was diagnosed 5 years ago at the age of 4. The above links are great, especially the Children With Diabetes site–make sure they visit that site as soon as possible. Right now it’s very shocking and scary and they need to hear from parents who have been there that it does get better. Please feel free to e-mail me if you’d like me to send them an e-mail or I can give you mine and they can contact me.
Another thing you can do is go to Amazon.com and order them a copy of “Sweet Kids”. It’s a book our endocrinologist told us to read when our son was diagnosed and it helped tremendously. Go the local pharmacy and ask for an Inject-Ease for insulin injections. You insert the syringe into the device and push a button and it injects the needle quickly, which is much less painful. I give my son shots while he’s sleeping and he doesn’t even wake up. For sugar checks, she’ll probably have a One-Touch, but get a Softclix for the lancet device. You can adjust the depth and make it easier on tender fingers that aren’t used to being pricked. As the skin gets tougher you can keep adjusting. It hurts a lot less than the lancet device that comes with the One-Touch. There’s also the monitor that takes a sample from the forearm. It uses very little blood and is practically pain-free, though I’ve found it to be a little less accurate when it comes to extreme numbers. If you can’t get these items at the pharmacy, order them on-line.
But, again, encourage them to e-mail me or ask if they’d like me to e-mail them because the most important thing they need to hear right now is that it gets better, they’ll be fine when they take her home (a very scary concept to parents of newly diagnosed kids) they’ll understand what to do and soon it will all be second nature to them and to her.
Mike, I’m sorry to hear the diagnosis. From what I have heard, the above is a good start. But what I (IANAD) would suggest is finding the very best endocrinologist in your area, someone who has taught endocrinology at a reputable medical school, and doing all of the things with a good discipline that are suggested by the doctor.
I keep up on health developments in the popular press, and Type I (juvenile) diabetes will be cured within the next 20 years in my opinion. There are transplant therapies now that are very promising, and progress with stem cell research is high.
This is an awful diagnosis for anyone, but it is not a death sentence. Many people with Type I live full lives.
I have Type 1 Diabetes, which I didn’t come down with till I was 22. (I’ve been a procrastinator). I don’t know what it’s like to a child with it. But Sparticus is right, diabetes, if taken seriously and treated *, is not a death sentence. At most, it’s an inconvenience.
[sub]* meaning you watch the diet, test the blood sugar several times a day, and get enough exercise[/sub]
I agree, finding the best Pediatric Endocrinologist is a must. I would find one that has the equipment in the office to test A1c, which is the best indicator of how the child is doing overall. Our’s has one in the office and my son is able to have his tested every three months with a finger stick. If they don’t have the equipment at the office, you have to take the child to an ER or lab to have a blood draw and often that is only done once or twice a year. They’ll also want to find a good nutritionist asap to help them develop a carbohydrate-counting meal plan.
Emotionally, though, it will help them to hear from other parents who have been through this that everything they’re feeling right now is normal and that it will get better and get to the point that it’s mostly an inconvenience. Our 9 year old doesn’t miss out on anything, including spending the night with friends, going to camp, cake and ice cream at birthday parties, playing sports, candy on Halloween–it might just take a little extra planning, but that planning becomes second nature.
My mom is a Type I diabetic. She was diagnosed when she was 19, and had just paid for a European summer vacation with two of her sisters. It was the mid-1960s, and the doctor told her she’d be an invalid for the rest of her life. Not only was sugar now a no-no, she had to forget the European vacation, she’d never have children, she could not expect to have any sort of a normal life.
Of course she went on the vacation anyway. She had two kids (fortunately for me!). My mom has managed to live successfully as a diabetic for thirty-six years now. That’s two insulin shots a day, every day, for thirty-six years.
Is it fun? Um, no, of course not. Mom has black-and-blue marks on her stomach and thighs from too many shots in tender places. I think she’d jump at the chance to be a part of any sort of cell-replacement test. Constant injections are obviously very unpleasant, and she’d love for a cure to be found. But despite what the doctor told her when she was 19, she’s managed to lead a perfectly normal life. Hooray for modern medicine!