My daughter was diagnosed as being type 1 on June of last year. I have had people tell me that first year is roughest. It seems like she still has too many highs no matter what we do! Anyone have the same problem. Its like we think we figure her insulin ratio is right one day and next it goes wonky.
hi @Spiderrowdy and Welcome to Type One Nation. Sometimes that first year can take from 10 to 24 months. Not to be a pessimist, but no one with Type 1 has perfect blood sugar all the time. I’ve been dealing with this for over 40 years, I consider myself an insulin ninja, and my meter tells me that my own min and max, over 3 months were 39 mg/dl to 390 mg/dl. There is no such thing as a “good ratio” because it depends on things your meter can’t read… such as stress, activity over the past 24 hours, activity over future 4 hours, fat content of the meal, morning stress hormones, and so many others. That’s why your brain is absolutely required to modify the suggested mealtime insulin bolus. This is something no automode or AI can predict. This is the skill set required to deal with Type 1.
so - I agree the first year or 10,000 hours or however long it takes are the toughest… but this never actually gets easier, in my opinion, it becomes more routine. Your expectations of “way too many highs” needs to also be realistic and while I can completely identify with your need to keep your daughter safe and healthy, you also have to keep yourself sane and allow you to enjoy yourself and all the “regular” stuff that should be happening in your relationship with your daughter.
getting a 400 on your meter doesn’t mean you are going to die…and it doesn’t mean you are a failure… it is a number that suggests you need insulin and nothing more (well, maybe it means another test in an hour) and it means you need to reach back and figure out what happened and add it to your list of life experiences.
also, there is technology that can help (pump, CGM, etc.) as long as it doesn’t cause more anxiety.
we are here to help. there are thousands of years of experience here. please reach out.
Hi @joe, me and my girlfriend really appreciate hearing from you. Thanks for pep talk.
Hi. I have two kids who came down with type 1. My son who was 17 at the time and my daughter who was 11 had a much harder time controlling her numbers. This I am sure is due to her age and entering puberty. Girls have A LOT going on at that time. Either way the disease is a balancing act and we adjusted both her long lasting insulin and fast acting, until the dust settled and we seemed to get it right. Then some time later her body would throw another curve ball and we’d just adjust again. We did decide to have her inject her long acting to mornings as she was going low at night - this way we would be more aware. Also they are both on CGM’s now and my phone gets notified with highs and lows. Great comfort. I know not offering the silver bullet, just sharing to let you it does get easier- well we get use to the up’s and down’s of our new normal. Peace to you and your family.
Thanks for the info. My daughter was 7 when she was diagnosed and we found out the hard way by her going into diabetic coma. We had no idea what was going on and neither did her family doctor. Thanks again @vdenerson
Diagnosed in 1969 things are way better with today’s technology. Children have growth hormone which helps them deal with long term high blood glucose levels. Growing requires more calories (& sugar) than life near 60 so a youth can get away with running more highs.
My problem has been the lows, which require about 5 grams of sugar and 45 minutes, for me to digest it. As a kid the crashes often left me on the ground waiting for my own glucagon to finally kick in or someone who understood my blood sugar problem to decide to help me.
Living with diabetes can get easier as the diabetic learns just how many things affect their blood glucose level. Food and exercise are obvious. Stress and hormone levels are harder to measure or predict. Dozens if other factors are learned over the decades. Trial and error are great educational tools. If just before a ‘date’ your son notices his blood glucose responding unusually, this is a note to take and compare to later 'dates." Once your daughter has menstrual cycles, how her body responds to sugar or exercise may be far different on day 12 than on day 24. We are all unique individuals who happen to share a common condition. It is not deadly as much as it is inconvenient.
I hope something said here has some merit with other type ones.
“It is a wise man who learns from the experience of others.”
1969 to now is a heck of a good run Karen @Beulah9. Nice to meet you and welcome to TypeOneNation.
You are so right that it doesn’t really get any easier just becomes more routine as months/years pass. I’ve only had T1D for 6 months now and it’s already become routine like giving myself shots is like brushing my teeth or combing my hair. By taking these shots it will keep me ALIVE & able to live a fulfilling life. It’s all about creating “new normals”
Has anyone experience more anxiety thinking about changing from MDIs to the pump or getting a CGM like the dexcom? Idk I want a CGM but at the same time get nervous about having a gadget attached to my body all the time. Any one else experience these same feelings too?
vanantva, I gave up the pump about a decade ago. For a long time it was nice being able to bathe, sleep and work without worrying about where my medical device was currently located.
Recently getting a CGM attached something else to my gut. Thankfully it is much smaller and, if kept away from where garments hit my waist, no real problem with its location (thus far). Keeping the receiver in a pocket was far better than having the tube connection of my former insulin pump. It was a fret wondering if I could learn enough about this Dexcom CGM before it arrived. Whether it would help my hypoglycemic unawareness, or end up being more trouble than I had imagined.
The videos were quite informative, and there are plenty of answers for questions, but getting my hands on the device made a big impact on my confidence level. It did take phone calls to their hotline number to both attach and remove my CGM the first time. All my worrying was a waste of good sweat.
The G5 did have lots of problems. Half a year of negative experiences in my first year trying to use it. Decades of MDI meant I could tolerate that CGM was not working all those months.
It is just a piece of durable medical equipment. Thousands used their CGMs before mine arrived. Now I place faith in the hotline staff if anything confuses me.
@vanantva I switched from shots to a pump 20 some years ago and have never looked back - I love it myself. When my doctor first broached pump therapy I wasn’t crazy about having something attached, not to mention tubing. But over time I discovered I was a gadget fanatic and it started to be more appealing. So at a doctor visit, even before he had a chance to ask if I had thought about it, I said I wanted to get a pump!
I adjusted pretty quickly. I’ve found the CGM gives me great peace of mind, and will be upgrading to Dexcom’s G6 Control IQ technology to use with my Tandem T-Slim pump, which should help keep me in range better than the self adjustments I do now. Most feedback I’ve read is positive although admittedly not everyone is crazy about it.
All that said, perhaps the question is why you want to switch to a pump. It was and I think still is considered better overall than shots for managing blood sugars. But some people do just fine with injections and prefer them for various reasons.
If taking shots works well for you, you’re not excited about pumping and there’s no great medical need to use one, don’t feel pressured. Think about it for a while as I did and you can always go there if you change your mind later. As for CGMs, I always recommend them for the peace of mind of having alerts, and the convenience of not having to prick my fingers if I need to know where my numbers are especially during exercise or while I’m driving. The sensor and transmitter are generally out of the way and I don’t notice them.
Thank you for your comment! I’ve had the Dexcom G6 for almost a month now and absolutely love it. Makes all the difference in the management of my diabetes. All my worries and anxiety was for nothing really. Like you said the videos on Dexcom website and Youtube were very helpful. I only had trouble the first time I applied it myself I had to call the technical support number to send out a new applicator but they are really good about doing that free of charge. I don’t really mind having a gadget attached to me all the time. I buy fun design tape patterns from like Pump Peels or expessionmedtape and those help shed light on a dark disease. Make it more fun and positive. Sometimes we just have to stop worrying and wondering & take the leap of faith because it’s usually worth it.
Thank you for the comment it’s very helpful. I’ve had the Dexcom G6 for almost a month now and love having it as a CGM. You are right it give me great peace of mind which is much needed. It helps me manage my blood sugars after walking and before driving much faster and painless. No more finger pricks! Such a blessing thankful for this great technology. The MDIs are working okay right now for me I don’t mind them except feel self conscious sometimes injecting in front of friends even family idk. I’m not sure if that will get better over time or not? I will continue to think about getting a pump. My endo talked to me about the Tandem Control IQ