Need advice re: Type 1 diabetes

Littledeer84

My young (14 yo) SIL was rushed to the hospital today, and we have been told she has type 1 diabetes. I am on the JDRF website trying to read up on it, but was wondering if any of you had any advice or could share experiences. When I was 15, a friend of mine (also 15) died after a diabetic seizure, and so my initial reaction is to be terrified for SIL. So far I am reading that most people with the disease can live long healthy lives, so that has calmed me down some. TIA. 

Karbird5

I'm very sorry your family is dealing with this diagnosis. My brother was diagnosed at 15 and we are celebrating his 40th birthday this weekend! I won't say it isn't a bitch though. My advice is to stay in tight control in the beginning. There is a documented "honeymoon phase" when you are newly diagnosed during which your sugars are often easier to control. You want that to last as long as possible. I would also say that the doctors spent a lot of time drilling into my brother's head all the possible complications, I think as a way to get him to take it seriously. It was overkill at a time he was already very scared. Look to a local hospital for a support group. I think it might help her to see other young people successfully managing this disease.

virgin4lyfe

Yeah, no, sorry BB but low sugars give people insulin comas a lot faster than high.
My mom's had Type 1 her whole life. She's really really brittle though, so I'm not gonna freak you out with her stories. But most people if they're careful, pay attention, eat correctly and do insulin correctly they do just fine. It's not like diabetes automatically means quality of life is bad or anything. It's just a little more difficult than perfect health.
I have a mix between 1 and 2 and my dad has two, so if you ever need to talk I'm pretty much the queen of anecdotal advice :P It's not fun, I'll be honest. I understood carbs and how to count and how to do all the necessary stuff before I needed to because of my parents and I still was bad and didn't follow my food necessities voluntarily for a while and messed my system up. It's a lot of willpower. You can't go out to an illegal high school party and get drunk without thinking about anything else. You can't go on an oreo binge without thinking about it. No extremes like that. But it is by no means a terrible evil thing that will mess up your whole life either.

virgin4lyfe

I could be projecting but my mom has been up in the 600s before and been mostly okay. Obviously she feels like crap and it's not good for your kidneys that high so she usually needs to go to the hospital and get something checked but...
when she goes low like 60's she gets incoherent and can't fix it so she goes down faster - less than 20 = insulin coma, then paramedics and ER and it's crazyyyy. I am v v v familiar with calling 911.
I have seen both ends of the spectrum. High you can call people and get help. Low you can't.
Again, she's a special case so I didn't want to freak OP out because I highly doubt (or at least hope) the situation her family is dealing with is this brittle but yeah I always vote for a little high over a little low.

virgin4lyfe

I would be very concerned about someone who has no symptoms when it's as low as 30. Like, call me crazy, but aren't bodies kind of supposed to tell you when something is that far off?
I don't get crazy incoherent but I do feel naseous and I don't want to eat when it's low. (Obviously, that is the wrong feeling for survival in general.)

MintBerryCrunch

Brandi Bee said:

My best gal friend from work has an eleven year old daughter who was DX with diabetes insipidus at age 4.  Like rushed to the ER from preschool because she was in DKA.   Scary.

All I can say is she stresses for ANY parent to consider continuous glucose monitoring.  And that a little low is better than being high.

Diabetes insipidus is is totally different from diabetes mellitus. It usually is due to a deficiency of antidiuretic hormone or the kidneys not being sensitive to ADH and it causes extreme diuresis. It doesn't cause DKA.

nanabanana06

I have a cousin 5 years older than me that has Type 1 diabetes. Growing up it was always a struggle with him. Eventually he got his insulin pump and things got better. He's a seemingly normal 28 year old now.

MintBerryCrunch

Brandi Bee said:

What?!  Everything I've ever learned says the opposite.  I googled it just to see....and yeah, wiki, but still.  https://en.wikipedia.org/wiki/Diabetic_ketoacidosis

Diabetes insipidus=type 1 and mellitus=type 2

We were taught DKA means your sugar is above a certain level-I wanna say 500 or something.  Not that you only have a specific kind of diabeetus.  Maybe you mean HHS-that is related to type 2 specifically.

Um, no. Diabetes mellitus has 2 forms, type 1 and type 2. Type 1 diabetics are insulin dependent because the cells in the pancreas that make insulin have been destroyed by an autoimmune response. It's usually diagnosed in childhood. Type 2 diabetics are insulin-resistant or don't make enough insulin, but do make some, and can often be treated with oral meds to improve insulin sensitivity, though sometimes they will need exogenous insulin too. It's pretty rare for type 2 diabetics to go into DKA because they do have some insulin and some sensitivity to it, so usually their glucose doesn't to go high enough to cause ketosis, though it's not impossible. 

Diabetes insipidus is totally different and has nothing to do with blood sugar, the pancreas or insulin. 

MintBerryCrunch

OP, I'm sorry about your SIL's diagnosis and about your friend. SIL will have some difficulties ahead of her but hopefully she'll make a good relationship with an endocrinologist who can help her learn about her disease and figure out a way to keep tight control on her blood sugar. I've had a lot of patients (and some friends) with insulin pumps and they're pretty awesome devices. The better control she can keep on her glucose, the lower the chance for complications. I'm sure you've read all about this by now though. Hopefully she feels better soon! 

BlueRidge8

Sorry to hear this.

My DH (who is 39 now) was diagnosed at 12. Besides being a PITA for him with shots and monitoring, he's remained healthy and was just inducted into our Alma Mater's Athletics Hall of Fame (he was a placekicker on the football team).

He just got a pump (the POD) a few months ago and love love loves it.

outnumbered

My MIL has had diabetes for over 50 years now. She goes to a doctor close to home and travels to Joslin 2x a year. Her doctor is a specialist, not her primary care physician. She is very strict with her diet and stays current with research and technolgy. It takes a lot and dedication and hard work, but she is still very healthy and living well. Having a great doctor and going to Joslin has been a key to her long life.

bumpuser1691848

My brother was diagnosed at 12. It's definitely better to be too high than too low, but it's not like you want it to be too high, either.

I'm sure she's already learned to do this, but tell her to make a log book. Write down the time she checked her sugar, what it was, and how much insulin she takes. And for the first few weeks or so, tell her to write down what she eats, just so that she has it already if the endo asks.

She's got to learn to read labels for everything (eventually she'll remember it all) and figure out how much insulin to take to cover what she ate and what her sugar was before eating it.

We were really confused at first and thought it meant that my brother couldn't have x, y, and z to eat, but really, he could, he just had to have it in moderation. Like, he could still have a slice of cake, he just couldn't eat the entire thing.

As long as she takes care of herself, checks her sugar when she's supposed to, and takes insulin when needed, she'll be fine. Oh, and tell her mom to get some glucose tablets from the store for emergencies. Keep a tube in SIL's purse, the car, at home, in mom's purse... everywhere.

Littledeer84

Thanks for the info ladies, it is really good to hear of so many healthy adults living with it. My experience as a teen really made an impression on me, and I never took the time to understand the disease more fully. SIL was in the hospital overnight. We know this will be a huge change for the whole family. FIL is type 2 but was not really trying to control it. We hope that the silver lining is that everyone will learn more and get healthier. Thanks for the advice about the glucose tablets and the journal, when I speak to SIL I will ask about what she has learned, etc.