Type 1 Juvenile Diabetes - Calgarypuck Forums - The Unofficial Calgary Flames Fan Community

bigtmac19 · 10-06-2018, 08:25 PM

My son’s 4 year old stepson was diagnosed about a week ago with Type 1 Diabetes. He had been having some concerning symptoms so his mom got the doctor to take a urine sample and the next day the hospital called them to bring him in immediately. He spent 4 days in hospital. All the family and extended family have had to take education classes to begin to learn how to care for him. He will need insulin four times a day and blood sugar checks 4 to 6 times a day, including each night at 2:00 am.

He hates the pokes and the shots it still involves lots of tears and struggles, his Mom has already noticed a personality change, he’s not the same bright happy boy. He had also just started school. On top of this they have a 12 week old baby so they are very busy.

The nurses on the unit are great. They will be his nurses until he’s 18 but it is always helpful to speak to other affected families.

Any CP families going through this with their children?

Buff · 10-06-2018, 10:05 PM

That sucks. I have type 2, it runs in my family. It sucks, but it is not as daunting as type 1. Your son's family will have a big adjustment and there will be trying times especially right now, but it's something they'll get used to and something they will get a handle on. Hang in there!

Minnie · 10-06-2018, 10:35 PM

No one here with diabetes (Type 1 or 2), but I have some friends who belong to this group, and your son and his wife may find some good support/info here.

https://www.facebook.com/groups/parentsofACH/

Amethyst · 10-06-2018, 11:06 PM

My cousin's daughter was diagnosed as a baby. She was showing a lot of "signs" but there was no family history, so they didn't test. Finally the parents insisted and her levels were off the charts.

She is now a teenager and doing well, but her mom (my cousin) has basically made her care her full-time job. They have 4 other kids and her husband works out of town, so it is manageable once you get through the initial shock.

One of the biggest difficulties they faced was when the daughter would get sick and throw up, because it would mess up her blood sugar levels.

bigtmac19 · 10-06-2018, 11:57 PM

Yes the nurses told them if he gets sick more than once, has a fever, it means a trip to the hospital every time, as he can dehydrate dangerously quickly. They have to be clear to the triage staff that he’s Type 1 etc.

It’s lucky in a way that his Mom is on maternity leave right now, so many appointments and getting used to the new schedule for his needs, it remains to be seen how she could work full time again.

A very overwhelming set of circumstances at the moment.

Buzzard · 10-07-2018, 09:11 AM

If doctors haven't already mentioned this, it might be worth looking into. It'd be perfect for a child with diabetes. The parents can check his blood sugar without test pokes and monitor trends as well through an app. A guy I worked with had it and liked it a lot.

My wife's type 1. She hasn't got around to it yet, but plans too. Apparently our health plan through work will cover it, so theirs may as well.

https://myfreestyle.ca/en/products/libre

psicodude · 10-07-2018, 09:45 AM

Hey Bigtmac. My son was diagnosed when he was 5 (6 years ago). I am happy to answer questions via pm or publicly for anyone's interest.

The first 6 months are really rough, but it gets better. Especially if they can get him on an insulin pump. That will likely take a couple of years though.

The first thing I like to tell parents of newly diagnosed T1D kids is that it's going to be ok. Diabetes is serious, but manageable. He won't die from this. With some work, your grandson will lead a very normal life. He'll just need insulin every time he eats.

The second thing is that the Children's hospital in Calgary, and the Endo clinic specifically, are absolutely incredible. They have tons of supports available, so don't be afraid to ask for help.

Feel free to reach out or ask anything here.

Stillman16 · 10-07-2018, 11:30 AM

My 10 year old son was diagnosed 4 years ago (at 6 years old-in kindergarten).

My wife (primarily) and I, work hard to monitor and keep him in range. The first few months were the hardest, but once you get into routines and embrace the available technology, it get easier.

The manual injections suck, since he has to eat a set amount of carbs at a set time, but keeping to the schedule really helps to get used to Type 1.

We bought a kitchen scale (that we still occasionally use) that can give you the nutritional info on most foods by weight--life saver!

Most fast food joints have nutritional info on a website, and you can google an estimate for just about anything else too.

Before our son went back to school post diagnosis, we met with the school (principal, teacher, and anyone else that might need to know how to help him, and gave them a quick tutorial, a written set of instructions of what to look for and how to respond (samples can be found online too).

I could write many paragraphs on tips to deal, but I don't want to overwhelm you!

There are a lot of groups for support on Facebook, and if you're in the Calgary area, there is a few groups for support as well http://www.carin4u.com/ is a good one to connect kids and parents, they hold events (Halloween, bowling, laser tag, archery, Christmas party, etc) the kids get to do fun activities, while parents get to chat.

If you'd like any other specific advice, I'd be happy to try to help (or ask my wife ;-P)

P.S. We are a very tech forward family, we have our son on both a CGM (Continuous Glucose Meter--Dexcom) and an insulin pump (Omnipod). I can help with questions on these also.

psicodude · 10-07-2018, 12:12 PM

Woah. We're exactly the same. Dexcom and Omnipod.

Here's my first piece of advice as Halloween is around the corner and brutal for diabetics: I buy the candy my son collects for 25 cents each. I had to cap it at $50 last year, haha. Then, he can spend that money on whatever. A toy or a video game generally. That way, they still get the fun of Halloween with the added bonus of getting a toy or whatever.

School will be a major pain, but cross that bridge when you come to it. Like Stillman said perfectly, this time can be overwhelming, so I will just answer any questions you have.

bigtmac19 · 10-07-2018, 01:04 PM

The class I have been to so far, the nurses are pretty set on not really controlling his diet too strictly, at least not yet. They operate under the premise of let them eat, correct it with insulin. They don’t feel you can deprive a 4 year old all of a sudden, she said just feed him. She doesn’t want him to constantly be told “you can’t eat that”. Something high carb they prefer he eats with a meal but that was the only instruction so far.

He’s a good eater thankfully so snacks, meals etc. he does quite well. He was insatiable for awhile before he was diagnosed so they said it would take a while for that to settle down.

I’m on my way to see him now, thanks everybody for all the great advice, I’m sure I will think of more questions along the way.

psicodude · 10-07-2018, 01:13 PM

She's 100% correct. It's a common myth that diabetics can't consume sugar. Let him eat whatever he wants and give the appropriate amount of insulin. He still needs to grow like normal!

Amethyst · 10-07-2018, 02:03 PM

I was once planning to bring mini blizzards to a family get together for a treat. I asked my cousin if I should bring something sugar free for her daughter and she said, no, she could eat the blizzard just like everyone else. (They would just monitor and give appropriate insulin.)

I had a friend diagnosed as an adult and at first they tried to control it was diet. When that wasn't enough, she was put on insulin and she actually preferred that, as she could just adjust her insulin accordingly, rather than having to worry about everything she ate.

Stillman16 · 10-07-2018, 03:41 PM

This is true, and ideal, however...it can mean extra shots (for second helpings, unplanned dessert) or can lead to having to replace carbs (if he doesn't eat everything on his plate, doesn't like what is offered-and refuses to eat it....).

Re Halloween:....the treats can make excellent treatments for low blood sugar! (Just make sure sugar is the first ingredient) We stock up right after Halloween, when the treats go on sale too!!!

For night time lows, juice boxes often work best, our son doesn't even wake up anymore!...probably another hurdle to cross at a later date as he learns to take care of himself in the future though ;-(

Street Pharmacist · 10-07-2018, 04:06 PM

Quote:

Originally Posted by Buzzard

If doctors haven't already mentioned this, it might be worth looking into. It'd be perfect for a child with diabetes. The parents can check his blood sugar without test pokes and monitor trends as well through an app. A guy I worked with had it and liked it a lot.

My wife's type 1. She hasn't got around to it yet, but plans too. Apparently our health plan through work will cover it, so theirs may as well.

https://myfreestyle.ca/en/products/libre

Unfortunately, this isn't approved for children yet. The Dexcom is though I believe.

Stillman16 · 10-07-2018, 04:23 PM

Quote:

Originally Posted by Street Pharmacist

Unfortunately, this isn't approved for children yet. The Dexcom is though I believe.

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!

Buzzard · 10-07-2018, 05:50 PM

Quote:

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!

This Dexcom sounds even better than freestyle libre.

I mistakenly thought that it was the first of this kind of thing. I'll look in to this and show my wife. Thanks!

psicodude · 10-07-2018, 06:03 PM

We love our Dexcom. It allowed us to sleep longer than 4 hours for the first time in years. It's expensive and not covered by AHS or most private health insurance. I put ours through my health spending account, which helps a little.

The disability tax credit helps a lot.

Buzzard · 10-07-2018, 06:11 PM

How much does Dexcom cost?

psicodude · 10-07-2018, 06:20 PM

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.

PaperBagger'14 · 10-07-2018, 07:25 PM

I'm sorry to hear about your son, and I can only give advice as the son of a T1D. I haven't lived with my Dad in about 15 years but I do remember having to inject him with glucagon as a 6 year old when he went into a coma.

One thing to watch for is alcohol intake as he gets into his teens, that had caused my dad to lose focus of his blood sugar levels.

Travel became difficult for him and hes too stuck in his ways now for a dexcom. With the strides we have made in treatment there is no reason your son wont be a happy and otherwise healthy dude.