Sarah Howard
Sarah Howard has worked in the diabetes research field ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.
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If you had T1D as a child, at what age did you start to manage your daily insulin doses mostly on your own? If you have a child with T1D, at what age did they start to manage their insulin doses mostly on their own? Cancel reply
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(No kids, how do I respond?)
Diagnosed at age 4. I began giving my own shots and monitoring BG at age 6.
In the 1970s, it was NPH. There was no ‘managing doses’. You ate at the same time every day and tried to get the carbs in before the insulin peaked.
The ENOD regimen: “Eat Now Or Die!”
At age 11 I tired Agustin myself and didn’t know what I was doing and struggled with lows. My doctor forbid me from messing with doses again until I was older. So, it was more 14-15 before I handled things on my own. But, still struggled.
diagnosed at 10. I was engaged in the dosing from the start. I was solely responsible for my urine tests. I spent several months using only Regular insulin, injected at each meal. The dose depended upon my urine test. After that initial period, my parents found an endocrinologist, and unlike our GP, he was up-to-date on the new developments, such as NPH, so dosing became less chaotic.
Always interesting how much the year of diagnosis plays into the experience. I was started out on the R/NPH “exchange diet” thing which was state-of-the art in 1983. I intellectually get that NPH was a new and wonderful thing, but MAN was it hard to live with that whole regimen, especially in the pre-glucometer era but even after. With CGM I could imagine it being a lot more manageable, but the very long effect curves of that stuff meant you had to structure your whole life around your insulin. Looking back that just seemed a given, the nature of the beast. Finally getting onto Lantus-Novolog MDI, with carb counting and the rest, after 20 years on that stuff was like being released from prison. Damn did I get hit with some nasty hypos on that stuff, especially NPH. Like a freight train coming at you. Every day felt like skating on thin ice. I used to call it the Eat Now Or DIE! regimen.
“You kids don’t know how good you have it!”
“Right, gramps, back to your nap.”
> N/A – I / my child was diagnosed as an adult
Interesting that more of us ticked that box (so far) than any of the others. I was dx’d in 1983, age 28, before the T1/T2 terminology came in. Doc told me about it, even as he put down “juvenile type” on my chart, the reason being that unlike T2 — “mature onset” back then–the auto-immune kind doesn’t really track with age. Always amuses me that despite the change to T1/T2, the “I thought only kids got that kind” myth lives on. Though the number of T1 adults who get misdiagnosed as T2 because of its persistence even among medical professionals is no joke.
I was surprised as well how many of us ticked the dx’d at an older age. Folks in the medical care business are always surprised when I tell them I was 55 when dx’d. Hmmmm.
Not really, only 41%, that leaves 65%+ diagnosed as a child.
Diagnosed at age 1 1/2 in the days of Regular and NPH – so, as others have said, no dosing, just a lot of “don’t screw up”. I did my own urine tests and injections by age 5, filled syringes by age 7, and mostly took over when I got my first blood glucose meter . . . one minute for a result, can you even imagine that today?!
With my first Glucometer in 1981 it took 5 minutes for the result!!!
You know, I was going to write 5 minutes but I thought that couldn’t possibly be right!
I was diagnosed when I was 18 1/2. So I managed my dosage on my own.
I started doing my own adjustment’s with CDE supervision once my parent’s got on board with BS testing. Started out with just the strips that we would cut to make the supply last longer, and read what BS by the color on the side of the bottle. I’d call my numbers in weekly to my CDE, with what I thought needed to be done and she would say that’s it or let’s try this and here’s why. By the time I was 15 I was doing it on my own. My brother on the other took longer to take it on himself.
I have to admit I did not want anything to do with giving myself my shot until I moved out of the house.
I hear ya, I had been in the hospital once or twice because I ran out of insulin and did not tell anyone. I was diagnosed much later in life, but ate but crumbs most my life because after eating I felt really bad. I hope you had caring parents.
I was diagnosed right before my fourth birthday.
I was diagnosed at 14 (1974) and managed my insulin, NPH and Regular, from the beginning. No carb counting back then!
It was 1961 I was 14 years old couldn’t believe this happened to me I took two shots today one in the morning I think it was pork insulin and regular small amount and at night a very small dose. There was urine testing which was a joke if you had run high sugar you were going to have it in your system for 24 hours so that was useless the blood test was a stick also if you didn’t time it right and get the right color you didn’t know where you were. I would say control was nil at that time had to boil glass syringes using big old metal needles. I was sick a lot missed a lot of school. As technology started catching up with the disease I grew up. Disposables were a blessing. NPH came into the picture that was another nightmare if you didn’t eat by a certain time you were a basket case. I remember I was 34 when I finally had a blood testing machine meter that changed my life then then came the pump so far been on the pump for 33 years out of my 61 years. Now I have a CGM that communicates with my pump it is so nice the technology is catching up life is so much easier now I look forward to continued good health.
I was also diagnosed in 1961 at the age of 11 and my story is exactly the same. That’s the way diabetes was treated back then with one or two shots a day that never changed. Every meal had a prescribed amount of carbohydrate, protein, and fat that had to berigidly adhered to with no variations. At least two or three snacks a day and no wiggle room for times of eating or again you were in big trouble. it wasn’t until 1980 or 1981 that we could actually do a finger prick and get an idea of what our actual blood sugar was. I never could understand why people complained about pricking their finger as it was just a godsend to know what your blood sugar was. insulin adjustments were usually done at doctors appointments but sometimes using a chart provided by the doctor my parents and I would discuss possible minor changes. I started from day one giving my own shots, boiling syringes and needles, testing urine, etc. Now on a tandem pump with control IQ and it is so wonderful. and till reading everyone’s comments, I had almost forgotten what a rigid life we all lead as children and kudos to everyone as we were extremely grown-up kids. No kids should have to go through that.
Sherrie and Patricia – I was 8 years old in 1962 and diagnosed in the same era of primitive diabetes care and lack of technology. We did what we had to do with what was known at the time and somehow managed to survive all these years. I remember a seemingly endless of schedule graham and milk snacks on top of having to eat three balanced meals a day. I was a petite, skinny little kid … no way did I need to eat all that food, but had to because of the need to “feed” the insulin to prevent episodes of severe hypoglycemia.
I was diagnosed at age 9 in 1960 and took Lente insulin once a day. Standard, unchanging dose. Urine testing didn’t tell you much of anything useful.
I was diagnosed at 8 years old in December 1962. We boiled the stainless steel needles and glass syringes every morning, and then later transitioned to a stainless steel tube container filled with isopropyl alcohol that was in a plastic kit that contained the injection supplies. I quickly learned to draw up my own syringe and inject my self once or twice a day as I adjusted to living with diabetes … my mother was too nervous and it hurt when she injected me in my arms, so I took over and started using my thighs about 2 months after being diagnosed and I have been on my own ever since.
I honestly don’t remember because there were so few options. Dx at the age of 8 in 1955. Urine testing, AM shot of beef/pork Regular and the ADA Exchange diet – period! I started giving my AM shot at 9, but my hands were still too small to manage filling the glass syringe. By 12 I was with a different MD and started on a carousel of every available insulin on the market. Not only did the type of insulin change but also the timing. I still wasn’t permitted to either provide any input or vary from the MD’s prescribed amounts. My entire adolescence was controlled by those rigid rules. Had to wait until I left for college at 18 to attempt to manage my insulin doses. I was on Regular and NPH by then and I wasn’t very successful.
I was diagnosed at 5 and was giving my own shots and pulling up insulin at that age. (I never understood practicing on an orange. I was told it was because it was most similar to giving a shot on oneself, but it _really_ wasn’t! LOL.)
As others have said, there wasn’t “management” per se as it was a fixed dose based on what the doctor said and the rest of life was changed to fit the dose. And also similar to others, I hit some really nasty lows. They got much, much worse and far more dangerous when a doctor doubled my dose of insulin.
I was diagnose at a time when there was a transition from glass syringes to disposable. I didn’t have to manage the glass syringes and those big honkin’ needles that had to be sharpened, but I knew someone who did. I was so very grateful for the small, disposable syringes when I saw and heard about the glass one!!
I found my old urine testing tubes the other day. I am very not sure why they were kept! LOL
I am not really sure but probably about age 13. But to tell you the truth, I really don’t remember having a sliding scale till much later because I was using urine strips to estimate blood sugar rather than using a blood glucometer.
There was no answer, I did not have T1DE as a child. I was 23 tears of age and one-year out of the USN. No relatives or family who had/have T1D.
Diagnosed at age 15, trained right away. 1970
I answered 10-12 because I started deciding on and drawing up the doses when I was 11, but I didn’t start giving myself the injections until I was 16 (needle phobia)
I chose between ages 10 – 12 because I didn’t start giving myself my shots daily until I was 11 years old. I did so for a short time when I was @ 9, but decided I didn’t want to be bothered. So, I basically told my parents/doctor that if I had to have insulin they could give it to me.
My parents sent me to “diabetes camp” (summer camp for diabetics) when I was 11, at my doctor’s recommendation. It took the nursing staff and counselors until the last two days of camp to get me to give myself my injection. I was a stubborn child!!
I found out I was diabetic at 13 and I had to take care of it from day 1 so easy answer. 13
T1D 56 yrs, diagnosed age 6. This was back in the day of glass syringes. My mother preferred to continue to do the injections until my teenage years. No reason I couldn’t have done it myself, but just never changed the status quo.