Type 1 Juvenile Diabetes

[bigtmac19]

I know they were looking into the Libre. The insulin pump, apparently OHIP won’t pay for that until one year after his diagnosis, however the nurses said if the hospital goes to bat for them saying he needs it sometimes they will approve sooner.

I will let them know about the Dexcom, that does sound like a much better device.

He’s waking up soaked almost every morning and also when they check him at night he’s usually wet. Poor guy is not getting good rest right now. When will this stop?

[Street Pharmacist]

Originally Posted by Stillman16

Also the Freestyle Libre only gives you the blood glucose number if you swipe the unit over the sensor, so no continuous monitoring.

This might be ok for an adult, or even a child that has some experience/awareness of their low/high blood sugar, but I'd recommend a continuous monitor like the Dexcom for young children.

The added cloud connectivity of the Dexcom makes monitoring even better for parents/grandparents when the T1D child is at school, or even at a play date....makes their lives more normal, and gives the caregiver some peace of mind.

Heck, it allows the caregiver to SLEEP, Dexcom will alarm if the blood sugar is out of range!

Another excellent point. While the Libre is continuously monitoring, it's data is only uploaded when in NFC range. Not ideal for children, especially early on

[Street Pharmacist]

Originally Posted by psicodude

Short answer is about $3500 per year. Dexcom has a plan that charges you monthly.

Long answer is that the sensors cost $80 each and are supposed to be changed every week. Some people stretch them out to 2 weeks. The transmitter lasts about a year and costs $800.

Worth every penny. My son's A1C has been between 6 and 6.7 since we started using it. We are very lucky to have the means to pay for it.

Edit: You have to own a compatible cell phone as well. Pretty much any phone from the last 4 years work. Android or Apple.

It's a testament to a lot of hard work and diligence to get a young kid's a1c there

[psicodude]

Originally Posted by bigtmac19

I know they were looking into the Libre. The insulin pump, apparently OHIP won’t pay for that until one year after his diagnosis, however the nurses said if the hospital goes to bat for them saying he needs it sometimes they will approve sooner.

I will let them know about the Dexcom, that does sound like a much better device.

He’s waking up soaked almost every morning and also when they check him at night he’s usually wet. Poor guy is not getting good rest right now. When will this stop?

He is wetting himself because there is too much glucose in his blood and it's the only way his body can get rid of it. Very normal for a newly diagnosed T1D, but something that his parents should work with his doctor's to fix. Having a high blood sugar is better than low, in the short term. It will take a few months for things to get figured out. Tell his parents that this is normal. He's also likely going through the honeymoon phase where his pancreas will randomly push out some insulin, which could make him go low. This too will improve with time. Ask the doctor's, but they are probably trying to keep your grandson's blood on the high end until his pancreas completely stops producing insulin.

Be aware that high and low blood sugars can result in some serious mood swings. Please consider this if your grandson is acting out or whatever.

The first 3 months are really difficult, but things will get better.

[psicodude]

Originally Posted by Street Pharmacist

It's a testament to a lot of hard work and diligence to get a young kid's a1c there

The credit goes to my wife. It's a 24 hour per day job and she's a rock star.

[FlamesAddiction]

Sorry to hear about the stresses your family has been going through. It has to be tough on the parents. It seems so trivial in comparison to what you are going through, but I remember being heartbroken even making my girl get vaccination needles. It's terrifying for a child.

I can't say I know a lot about diabetes. I know it is a serious, yet manageable condition and the little one will get used to the needles.

Just anecdotal, but I have a friend that has the same condition and in her 30s now, and she is so in tune with her body and physically fit, and large part of that is due to her having to look after her health her whole life. Again, not to at all diminish the seriousness of the disease.

[Stillman16]

Luckily for us, my work plan 100% covers Dexcom! Also, Alberta covers the insulin pumps! We only are on the hook for the part my plan doesn’t cover for the insulin (about 20%).

But with the tech, comes stuff to support it (tape, adhesive wipes, alcohol wipes, self adhesive tape for wrapping it), also treatments, a good bag for him to carry his equipment in, phone, Apple Watch...I’m sure I’m missing some stuff too.

So it looks like you’re in Ontario? Right? There’s a great group that’s based there, the main guy is a former Olympian named Chris Jarvis. It’s called I Challenge Diabetes, you should look it up. Chris also travels across the country to do activities with T1D’s, that’s how our family met him!

[bigtmac19]

He’s definitely having mood swings ☹️.

He had a good day yesterday, with 13 of his cousins over they played outside for hours, which was good for him in several ways.

Again I really appreciate all the helpful advice and personal experiences, it helps a lot. Thank you so much.

[Stillman16]

Before diagnosis, our son was very emotional (still is a bit) but was over the top, as soon as he was getting his insulin, even the teacher in kindergarten noticed the difference!

Best advice I can offer, is to make sure he learns to stand up for himself, especially with regards tot he diabetes! Once he's feeling his low/high blood sugars, his "feelings" will necessitate standing up to teachers/subs/friends, to make sure he has access to the tools he needs. Our son, in grade 1, told a substitute teacher to call the principal when she wouldn't let him use his gear! Need to be encouraged to do that!

Also, the meetings we have with our son's teachers before the beginning of each year help emphasize the seriousness of the care/equipment/gear we are sending (he was the only grade 1 student allow full access to a cell phone in the school's history!). Ultimately, when they cooperate, their/your job is easier...

[Stillman16]

https://www.diabetesatschool.ca/tool...dual-care-plan

this link has great resources for the care/transition to school.

[Amethyst]

Definitely talk to the school when he goes. I hadn't thought of it from that point, but years ago I had a student who was diabetic and we had to help him test his blood and another time had a student with seizures. In both cases, the parents came in before the child started school and explained / showed us what to look for, what to do, who to call in an emergency. It made us a lot less nervous about having a student with the condition and I'm sure it gave the parents peace of mind as well.

[bigtmac19]

The school board provides a nurse who will come every day, test him and give insulin at lunch. They’ve already had a meeting with the teacher and principal to set this in motion.

[psicodude]

Originally Posted by bigtmac19

The school board provides a nurse who will come every day, test him and give insulin at lunch. They’ve already had a meeting with the teacher and principal to set this in motion.

Wow, that's incredible. Here in Calgary, my son is on his own. My wife had to go to the school everyday at lunch to administer insulin until he got on the pump. Now, he just texts her, thankfully.

Stllman's post about teaching your grandson to advocate for himself is fantastic. I couldn't agree more. He needs to learn how to care for himself as he gets older, but he needs be able to stand up for himself.

[bigtmac19]

Originally Posted by psicodude

Wow, that's incredible. Here in Calgary, my son is on his own. My wife had to go to the school everyday at lunch to administer insulin until he got on the pump. Now, he just texts her, thankfully.



Stllman's post about teaching your grandson to advocate for himself is fantastic. I couldn't agree more. He needs to learn how to care for himself as he gets older, but he needs be able to stand up for himself.

That’s awful. Maybe it’s the difference in size of cities, there are approximately 250 Type 1 children in this area.

However I can’t believe, in a city the size of Calgary they don’t provide any support in the school system.

I definitely agree about teaching him to advocate for himself as well.

[Stillman16]

Our son is pretty much on his own as well, at least 3 T1D in his GRADE at his school...

That said, if the office staff see us come in the door, they are ready to hold the next door (for us to run in if necessary) or help in anyway we need (locate our son, call the teacher, etc). Usually happens if our son ignores the texts....or his phone acts up.

[psicodude]

As far as I know, there aren't any school nurses in Calgary anymore. Not really sure why.

We do the same thing as others have posted. We meet with his actual teacher and just request that he be able to check his blood if his CGM starts to vibrate. He is also allowed to call his mother or I if he needs to. We made him a "diabetes kit" that contains extra test strips, glucagon, candy, and dextrose tabs that he keeps in his classroom. It works. I'll try to post a picture of it tonight.

[bigtmac19]

Bad morning so far on his first day back at school . He didn't sleep well, had a low at 3:00 am and they had to get juice/food in him. Then he was up again at 4:30. Also the baby was up a lot through the night. His Mom said he looked so sad and nervous this morning.

The nurse came to the house yesterday to ask about what time he eats at school etc., then said she would not be the one who comes, so now it's a strange person coming to give him his shots.

I know it's very early yet and things will get better, I just hate seeing them all go through this.

And, to top it off, the nurse did not show up when she was supposed to and when she finally did, said she had no idea what his orders were! She also didn't call Mom to let her know what his numbers were, and no response from CCAC office to phone calls.

[psicodude]

Originally Posted by bigtmac19

Bad morning so far on his first day back at school . He didn't sleep well, had a low at 3:00 am and they had to get juice/food in him. Then he was up again at 4:30. Also the baby was up a lot through the night. His Mom said he looked so sad and nervous this morning.

The nurse came to the house yesterday to ask about what time he eats at school etc., then said she would not be the one who comes, so now it's a strange person coming to give him his shots.

I know it's very early yet and things will get better, I just hate seeing them all go through this.

Sorry to hear that. Let Mom know that what she is feeling is normal and your grandson will be fine. Try to find a routine that works for them and keeps the parents sane.

[Stillman16]

When we started after diagnosis, the Diabetes team started our son on Intermediate (NPH-N) and Rapid (Humolog) insulin. This timed the peaks of his doses to occur in such a way that no shot was required at school!

Drawback was, he had to eat a set amount of carbs, at a set time everyday for lunch...so if he didn't like/want something, needed those carbs replaced...and no extra carbs without an extra shot...

[bigtmac19]

Right now he’s on 3 doses of Novorapid and one of Lantus each day.