Teen newly diagnosed with type 1 diabetes help!

[Selket]

Thank you all for the help. So she is just 2 weeks out of the hospital. Her a1c was 16. Because she has been at 400 for a while they want to pull her numbers down slowly. So she still hits 350 and then down to 95 the same day.

Currently we have no idea what is going on as she is nowhere near stable. A 10 minute trip to the mall is about all we can do currently.

She is currently not on her full projected dosage of insulin. Her numbers begin raising at 4am. Then she is trying to bring them down. We do not fully understand how food plays into this. She has been eating almost the same exact items every day at the same time until we see the nutritionist. Yet her numbers fluctuate greatly.

She really wants to go to oogie boogie bash this year. Those tickets go on sale on Tuesday. I think that is why I am so panicky because she is not stable.
I just need to remind myself that tickets are next week but the event is not until October. We could be at a different place by then. Hopefully our understanding will also be increased.

This is all completely normal to have fluctuating numbers. Her pancreas may still be making some insulin - eventually that will stop. An insulin pump can really help with the fluctuating doses but it is a learning curve on top of the one you already have (if it was me I'd want a pump however). Something to discuss with your medical team.

I think any type 1 diabetic will tell you they could eat the exact same thing in the same amounts at the same time daily and have different blood sugar numbers. Maybe not the fluctuations you're seeing but more plays into numbers than food (tho food is the biggest variable - activity - being out in the heat or cold - hormones - etc).

I'd get the tickets if you're lucky enough to score them and plan to go in October. Take each day at a time and realize that it is going to take awhile but she will be a pro at this and you as well.

I just returned from visiting my son with type 1 who works at WDW (college program). (he's in a/c at work and has access to his low treatments and so on). He was talking to another guy who works at the MK who has type 1. I've met someone who climbed Mt. Everest who has type 1: https://beyondtype1.org/first-t1d-summit-mount-everest/. I'd get the Oogie tickets and work toward the goal - it will be a different time than she would have had, and she may need to stop more and test and treat but if SHE wants to do it - it may be motivation to keep moving forward.

Also be sure to visit the Children with Diabetes website - lots of good stuff there: https://childrenwithdiabetes.com/

 

[ttintagel]

Yes, before I got my CGM, frequent testing (as in, more testing than usual) was very important to staying on target during a park day.

 

[tinkerjo]

My DS was diagnosed with type 1 diabetes at 13 and I was terrified to take him to WDW when we went 6 months later. I worried for nothing. He had almost no dietary restrictions (regular soda and regular syrup was it) for him, his insulin needs were cut in half or more from all the heat and activity. Our team of doctors were awesome and encouraged him to live his life without limitations. Just be prepared. Have her carry her own supplies and snacks. Juice boxes/koolaid pouches and applesauces are great to carry for lows. (DS had more trouble with lows than highs) since your trip is several months out, you have time to figure things out and get better with carb counting. Good luck and don’t worry about Disney. Feel free to PM me. DS has been doing this for over 10 years and we have been to WDW and DL. He was an all Ohio pole vaulter and is currently a police officer and his A1C is 6.1. It is scary at first (and I’m a nurse) but it can be managed

 

[summerlyangel]

Type 1 dd here, now 25, diagnosed at 17 right after a Disney trip! I'm also a type 2, managed with strict diet and exercise, no insulin, so I have experience in both settings here.

I think everything I would say has already been posted, but wanted to echo previous posters and reassure you that it will get much easier and won't always be as scary as it seems right now. Big hugs!

We use the frio, too, and it works great for us. Dexcom is a lifesaver and can make things so much easier! My DD has absolutely no issues treating wherever she is, whether it's a queue, restaurant, bus, show, etc. With experience, it's seamless and discreet. We have only had one scary instance at WDW and that was after the firework, trying to leave the park. We were behind the castle and all of the food stands nearby were closed....she had run out of her smarties that she uses to treat. We were in a crowd, it was a mess! DH was able to run to a closed food cart in the castle circle that still had employees in it and explain what was happening. They practically threw cotton candy and a coke at him, lol. Didn't charge him! He ran back to us, she had the soda and some cotton candy and all was well after about 20 mins. Going low in the heat and with all the walking is the absolute biggest concern for us and seems like that is pretty common.

About DAS, we've never needed it for diabetes control itself. 2 of my DD's have autism and I use it for what we think is a diabetes related condition (still working on figuring out exactly the issue and how to treat!)

 

[poohnpigletCA]

Frio users wich is your favorite. There are so many options 1 pen, 2 pens, large pouch etc. At the moment she uses 2 pens 5 times a day so she will have to take them to school with her.

 

[gap2368]

Frio users wich is your favorite. There are so many options 1 pen, 2 pens, large pouch etc. At the moment she uses 2 pens 5 times a day so she will have to take them to school with her.

I use the two pen one when I go

 

[lanejudy]

Unless you live in a hot climate with a lot of outdoors during school, she probably doesn’t need a FRIO for school. A basic diabetes bag will work and keep all her supplies together. There are some that look like a small crossbody purse that are popular with the teen girls.

As for which FRIO - my DH opted for 2 single-pen in different colors. His were taken at different times and this kept them easily recognizable which was which. Plus in the rare event he needed some assistance it was easier for him to say “I need the blue one now.”

 

[tinkerjo]

I wanted to add that my DS school gave us a hard time about carrying any diabetes supplies, checking his blood sugar in class(prior to using a CGM) and only wanted him doing finger sticks and storing/giving insulin in the office. DS was adamant about not wanting to make a big deal out of his diabetes and could discreetly do things in class/lunchroom. They also tried to make him log everything in the nurses office. I finally got the nurse to lay off him after his freshman year. There may be some things you have to fight for, make sure you do a 504 plan with your school disability office. I always told DS though that if he started slacking, he could go back to the nurse. Also be prepared for the VERY uneducated people that tell their kid they can catch diabetes from your daughter, and that friends parents (even family) may be scare to have her spend the night.
ETA- you may want the school being super involved at first, so I am probably ahead of myself. Just know in the future that you do have options within the 504 plan

 

[DisneyOma]

I wanted to add that my DS school gave us a hard time about carrying any diabetes supplies, checking his blood sugar in class(prior to using a CGM) and only wanted him doing finger sticks and storing/giving insulin in the office. DS was adamant about not wanting to make a big deal out of his diabetes and could discreetly do things in class/lunchroom. They also tried to make him log everything in the nurses office. I finally got the nurse to lay off him after his freshman year. There may be some things you have to fight for, make sure you do a 504 plan with your school disability office. I always told DS though that if he started slacking, he could go back to the nurse. Also be prepared for the VERY uneducated people that tell their kid they can catch diabetes from your daughter, and that friends parents (even family) may be scare to have her spend the night.
ETA- you may want the school being super involved at first, so I am probably ahead of myself. Just know in the future that you do have options within the 504 plan

Did you have to sign a release form so that the school wouldn't be held liable if something happened? What did the 504 do that he needed?

I have worked with several diabetic students - none of them had issues going to the nurse's office, and they didn't think it was a big deal to go. One great story from it - we had a special needs student who was also diabetic, and he bonded with one of our best athletes who was also diabetic. They even buddied up to go to prom They met while testing in the nurse's office. It actually normalized the situation for the students, as they felt like they didn't have to hide anything.

 

[tinkerjo]

Did you have to sign a release form so that the school wouldn't be held liable if something happened? What did the 504 do that he needed?

I have worked with several diabetic students - none of them had issues going to the nurse's office, and they didn't think it was a big deal to go. One great story from it - we had a special needs student who was also diabetic, and he bonded with one of our best athletes who was also diabetic. They even buddied up to go to prom They met while testing in the nurse's office. It actually normalized the situation for the students, as they felt like they didn't have to hide anything.

I never did have to sign a waiver. DS was just always very private about his diabetes and everyone (even kids) deserve that privacy(within reason). He never wanted to be singled out or treated differently but obviously after he started pumping (omnipod) it was very obvious. It’s hard to explain. It was no secret he was diabetic but he definitely didnt want to draw attention and I wanted to help him by respecting his privacy as long as he remained healthy and did what he was supposed to do. I’m almost positive that it was added to the 504 plan that he could carry his supplies with him in school so he could treat himself as needed without leaving class.

 

[poohnpigletCA]

Unless you live in a hot climate with a lot of outdoors during school, she probably doesn’t need a FRIO for school. A basic diabetes bag will work and keep all her supplies together. There are some that look like a small crossbody purse that are popular with the teen girls.

As for which FRIO - my DH opted for 2 single-pen in different colors. His were taken at different times and this kept them easily recognizable which was which. Plus in the rare event he needed some assistance it was easier for him to say “I need the blue one now.”

Oh my goodness we just fell down the diabetic bag rabbit hole. They are awesome. And the crossbody looking ones are her favorite.

So is there a small sharps container to keep in bage for when not at home?

 

[lanejudy]

So is there a small sharps container to keep in bage for when not at home?

DH uses an old empty Rx bottle - like from an antibiotic or such.

 

[DisneyOma]

I never did have to sign a waiver. DS was just always very private about his diabetes and everyone (even kids) deserve that privacy(within reason). He never wanted to be singled out or treated differently but obviously after he started pumping (omnipod) it was very obvious. It’s hard to explain. It was no secret he was diabetic but he definitely didnt want to draw attention and I wanted to help him by respecting his privacy as long as he remained healthy and did what he was supposed to do. I’m almost positive that it was added to the 504 plan that he could carry his supplies with him in school so he could treat himself as needed without leaving class.

Good idea to have him be able to carry his supplies

 

[ttintagel]

I didn't have any success at getting my school to allow me to keep any medications or supplies with me outside of the nurse's office. It was a real pain in the butt, especially in some classes where I was constantly having to ask other students when I missed while going to the office to test. My current closed loop system would have been a lifesaver.

 

[poohnpigletCA]

Well going off the fact that my que has not moved at all. I don't think I'm going to have to worry about oogie boogie tickets

 

[EACarlson]

Frio users wich is your favorite. There are so many options 1 pen, 2 pens, large pouch etc. At the moment she uses 2 pens 5 times a day so she will have to take them to school with her.

I use a two pen for all of my travel, but I'm type 2 so I don't need to take it with me into the parks or elsewhere. Nice thing about Frios is that you can just wet them in a sink and they stay cool.
Get used to carrying glucose tabs, you never know what exactly is going to cause the BG to crash.
For used needles, I was told to use an empty pop bottle while travelling.

 

[ttintagel]

A lot of restrooms at WDW have sharps disposals in them now. Not sure about DL.