Introducing Myself

Hi, I’m Christine :blush: My three year old daughter was diagnosed on 4/17/2023 with T1D. I was half-way through divorce negotiations with her father when she was diagnosed. It has been a challenging year. Co-parenting can be difficult on its own but co-parenting a T1D toddler has brought many new challenges to the table. I’m hoping to make some new connections with individuals who have T1D themselves and/or are parents of T1D children.

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Hi Christina, welcome!

Sorry to hear about your 3 yo dx. I was dx in 1965, age 5. In some ways, that means that I had minimal impact as a child, getting minimal changes other than 1 injection (lente) per day and checking urine for glucose.
But that also led to more/early complications since my Mom was recommended to a pediatrician that had minimal experience with kids with diabetes. When I graduated college, I found my first endo and lots of changes to my treatments.

But now approaching 60 years with T1D, so not so bad.

Ask lots of questions, and take away what seems best for your situation.

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Hello, thank you for your response. Have you had any related complications? Do you eat a heavily restricted diet?

Welcome to the community, @Christine! Lots of experienced members here, both patients and parents. Be curious to know what your toddler’s regimen is at this point. In particular, whether you have her on a CGM (Continuous Glucose Monitor) yet. Three is close to the youngest age for that, but I think Dexcom is approved for it and the latest version is pretty compact (I believe Libre is age 4+). I ask because I’ve had T1 for 40 years and in all that time I think the development of accurate CGM tech is probably the single most life-changing innovation. Particularly for parents, where being able to monitor your kid’s blood glucose (BG) over night and when you’re not in their immediate presence is a huge stress reducer.

If you have any questions of your own, fire away!

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Hello, my daughter started on the Dexcom G6 pretty much right away, we put one on her within two weeks of diagnosis. I don’t know what people did before these CGM‘s existed. She started the Omnipod 5 pump about four months after diagnosis. I think I am just surprised how hard it still is even with the CGM and the pump.

My ex-husband is pretty much following Bernstein and doing low-carb to no carb and I am on the opposite end wanting to give her carbs and learn how to dose for them so that I can teach her how to when she is older. That creates a lot of ups and downs when she’s with me versus very steady when she is with him. I also have two other kids and Soccer and Tennis and we’re on the go all the time and I’m very busy and she is very active with me, which creates even more ups and downs. When she is with him, they are pretty sedentary and at home aside from going to the park every once in a while. He wants me to go low to no carb to keep her more consistent because in his opinion I’m threatening her health. What do you think? My standard deviation is usually around 44. Her A1C in January was 6.8. Next appointment is 5/1. I’m hoping A1C will be down to 6.5 at least, fingers crossed. A1C started at 12 and we’ve decreased at every 3 month appointment so far.

I just posted a question about the Dexcom G7, because we used it very briefly before we started the pump, and it seemed very inaccurate at the time. I’m wondering if people are finding it more accurate now?

@Christine, welcome to TuD! Like @MM1 and @DrBB, I’m also an adult living long-term with T1D. There are many parents of young T1Ds here too.

I totally agree that the advice to consider a CGM if you can economically afford it. Insurance coverage can make it affordable. It provides you, the parent, with an education on how eating choices and activity affects blood glucose. It also provides a critical safety factor,

You have reached out to this community during an especially difficult time for you and your family. Just know that you can overcome the many difficult obstacles you now face. I have not parented a young child with diabetes but I have parented a young child as I, as an adult diabetic, have gone through a painful divorce. There is light at the end of that tunnel!

Yes, I do have some related complications after living with T1D for over 40 years. I began therapeutic carbohydrate reduction after 28 years and the positive effects of that way of eating make me wish I had started sooner.

I don’t consider my diet “highly restrictive” but an alternate way of eating that I find satisfying, nutritious and healthy. It has calmed my life as it has reduced the metabolic mayhem to a minimum.

Knowledge is power and community is vital. I wish you luck and trust this community can answer the many questions you might have.

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I didn’t see your last comment until after I posted my last comment.

I’m happy to read that you already placed your daughter on a CGM as well as the Omnipod 5 pump. Yes, these improvements in technology do make the whole drill simpler, yet not perfect. The human knowledge and expertise is the critical factor.

Is your daughter’s father a T1D? His endorsement of Bernstein’s methods is usually made by people with diabetes. I suppose there are more parents of young T1Ds who are aware of the effectiveness of carbohydrate restriction.

It’s an essential fact that consuming fewer carbs means dosing less insulin which then lead to smaller mistakes. No protocol can eliminate dosing mismatches, especially in a growing active child. Making these mistakes smaller is key.

For 28 years I tried to find the magic formula to dose my insulin effectively. I tried to thread that needle to avoid hypoglycemia yet also honor my future self by reducing hyperglycemia. I was never fully successful in that endeavor and after considering therapeutic carbohydrate reduction for two full years, I pulled the trigger after receiving a gastroparesis diagnosis. The good news is that my new way of eating stopped that complication and I no longer suffer its ill effects.

I salute your active effort to control your daughter’s blood glucose. It’s not easy!

You mention standard deviation, the measure that reflects glucose variability. I think this measure is under-appreciated by the diabetic community. I can tell you that prior to 2012 when I started to reduce my carb consumption, my SD was north of 60 mg/dL. I soon saw it fall to 30 and it now is < 20. I can’t convey how much this has improved my life.

My metabolic emergencies are now few and far between, unlike the daily phenomena of my high carb days. Critics of low carb eating often say that this lifestyle is not sustainable. Definitely not true for me as it’s been 12 years and I never want to go back to that risky time.

I don’t have any info on the G7 as I’ve been holding back on the G6 for as long as possible.

Wow, thank you so much for sharing all of that invaluable information. I appreciate your feedback and will use it to help me make future decisions with my daughter. :pray:t3:

So, this is a very complicated issue because it’s not you with diabetes but you have an opinion and your ex has an opinion and very soon your daughter will have an opinion. I was diagnosed when I was 1 1/2 and have had diabetes for over 31 years. I don’t have any complications even though my control as a child was bad even with every bite of food being monitored and the newest protocols every time there was a treatment advancement.

CGM was the magic bullet that finally gave me good control. I have tried every diet out there and finally decided to stop dietary restrictions for my own mental health which did not effect my control at all but I am an adult who can gauge what I need to do and react to my BG’s whenever I need to.

There are benefits to low carbing or very low fat diets but keep in mind that obsessing about food can lead to eating disorders especially in children. Seeing your siblings or friends eating whatever they want can be very sad for a child but if she is happy eating low carb and it helps you then go for it.

There’s always time to learn later how to dose for carby foods but I would allow treats to prevent unhappiness. I don’t mean dessert with every meal but if everyone else is getting an ice cream or a slice of cake then don’t exclude her just be sure to dose her far enough in advance that there isn’t a huge spike in BG. Oh and running around for 15 minutes after eating is the best BG control I know of other than insulin of course.

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Good to meet you, Christine.

In the olden days, when I was a newly diagnosed kid, they used to have us meet with a nutritionist who would provide a meal plan that was appropriate for our age and weight. I think that’s a healthy starting point.

I’m 42 now, diagnosed at 11, with no complications. I was a weird, kinda sensitive kid who quit eating meat at age 7 because I didn’t want the animals to die. By the time I was 11, I was pretty well prepped for diabetes and was used to reading nutritional labels looking for things like “beef tallow,” and “gelatin,” and things I deemed were “not nice” to cute little animals.

That being said, things aren’t as difficult as they used to be because we have pumps, monitors, and sliding scale insulin. They used to train kids according to a pretty strict meal plan where you took the same amount of insulin everyday and ate the same amount of carbs.

There was no sliding scale…at least for kids. They might have been trying to simplify things down for kids then. Some of that might be really appropriate, according to the kids age and ability level.

But, I recall being really hungry a lot of the time. That was kinda miserable. If my blood sugar got high, at age 11, the only way that I knew how to deal with that was to take insulin and not eat my allotted carb count. If your not eating meat and your not eating carbs, then you are hungry. Eating a really high protein diet is not great for our kidneys. Diabetics have a lot a kidney problems.

I kinda agree with Firenza about not over restricting. I think that can backfire in a number of ways and produce worse outcomes. You need a healthy middle ground provided by a nutritionist. I don’t think that going “no carb” is better for a growing kid. It’s fine for high performing, middle aged diabetics on this forum. But, stay away from the impulse to take this to either extreme. Try to avoid high carb. Try to avoid NO carb. Target a middle ground, like a professional nutritionist would recommend.

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One concept about eating is “eat to your meter” (or now cgm).

So if before meal, I am low or high, I take that into my food choices and insulin dosing.

Another factor is what I call exercise on board. So if eating a meal usually needs 5 units bolus, I may dose less, or eat more, based on “exercise on board”.

It’s also fine to dose approximate insulin, then add more.

This is easier now with use of pump or pens.

This is wrong. I want to revise this statement. But, I’m curious what other people think.

It might actually be more difficult today, than it used to be. It’s more flexible today. CGM’s make it safer. Insulin pumps bring flexibility for experienced diabetics. I don’t believe that pumps, necessarily, make things safer for kids. They could actually make things more dangerous. I’m on the fence about that. I don’t think there’s anything wrong with kids starting on one manual injection bolus shot per day. Is that old fashioned of me? I don’t think I had any interest in, or value that could be derived from a pump until age 25. It was just a liability until then. But, everybody has their own path. 25 is the age that I believe most people cease to be a walking, breathing threat to public safety…not just diabetics. A large part of me believes that you shouldn’t be issued a license for a gun, an insulin pump, a marriage license, or given a job for anything important until age 25.

You are very welcome here, this is a great space to share experiences and get advice, so you have come to the right place.

Your shock at finding out your daughter is type 1 must have been quite overwhelming, and now navigating this with your ex-partner must be very difficult. You will no doubt find that your little girl grows and adapts with this condition, and while she will have ups and downs, you will end up feeling very proud of her. I was diagnosed when i was 10, i have no memories of life pre-diabetes and i think this is helpful in the long run. I say this conscious of the huge difference between a 3 year old and a 10 year old.

I agree with previous posts to be careful with placing big restrictions on food. I think, as in general nutrition, no particular food is the enemy, everything has a part to play, be that good fats, fibre, proteins and carbs - ultra processed food to be taken in small amounts along with refined sugars, but otherwise i always say my diabetes diet is a basic healthy diet (though vegetarian/largely vegan for me). While not low carb, I do tend to stay around 70g carbs a day as find that this help with my overall control. I loved the comment above that said about allowing her to take part in a slice of cake with friends, etc. Absolutely numbers are everything in diabetes, but I think the odd high as a result of a lovely time with friends to be a small price to pay every once in a while. Reducing resentment of a condition that cannot be cured is ample trade.

I wish you all the best.

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Hi Christine. I will have my 60th anniversary as a Type 1 diabetic in June. For the last 11 years, I was extremely lucky, as my endocrinologist was one of the top experts in the world on diabetes (unfortunately, he retired last year). One thing he always stressed to me and that I think you should always keep in mind is this: no two diabetics react the same way to ANYTHING. Just because something works well for one person does not mean it will work for you. Unfortunately, this means you will be faced with a lot of trial and error for the first while but don’t get discouraged. Once you find what is suitable for your ;daughter, things will get easier. However, as she grows, what worked yesterday may not work tomorrow! It is an ongoing learning process but don’t get discouraged. As MM1 said, when she and I were first diagnosed, the only treatment was one injection of insulin per day and “blood tests” with urine. Today, there are many, many resources available, from sophisticated blood glucose test kits to insulin pens to TINY needles for the pens to pumps and continuous glucose monitors, all of which make diabetes much, much easier to live with. If you have questions or are unsure about anything, don’t hesitate to post here and ask anything you want. There is sure to be someone who has encountered the same thing and can give advice. But don’t forget – take any advice and any answers with a grain of salt. As I said before – NO TWO DIABETICS REACT THE SAME WAY!

Hello Christine, I was diagnosed in 1945 when I was 6 years old. I used insulin taken from pigs for many years. i started using modern day insulin in the late 1990s. I am now type 1 for 78 years, and I have no serious complications. I have nerve damage (neuropathy) in parts of my body which slows me down, but that may be mostly caused by my age. I am 84 years old.
I hope your daughter is healthy and having success with her diabetes management.

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