Teen newly diagnosed with type 1 diabetes help!

[poohnpigletCA]

So last week I took my teen daughter to the ER as she was ill. The Dr came in and said it was diabetic ketoacidosis. We didn't know she was diabetic.
That was one week ago tonight. She is type 1. We are trying to come up to speed. She is getting a Dexcom G7 and currently has 2 insulin pens.

Her first question was how can she do Disneyland? What food can you eat. Can you carry your insulin pens with you? Does the insulin get too hot?

Any tips and tricks would be greatly appreciated.

 

[DIS Fan from IL]

I am a Type 1 Diabetic myself and have been to Disneyland many, many times through the years, so I am very familiar with what your daughter's experience will be like. Thankfully, the tools that she has been given make managing a day at Disneyland very easy for someone with Type 1 Diabetes. Here are some things she should know.

First, the greatest challenge she will face is managing her blood sugar levels with all of the exercise she will be getting walking around the park. Her biggest danger will be from her blood sugar levels dropping too low because of all the exercise. Fortunately, she will be able to monitor her sugars very easily with the Dexcom G7. I just got the G7 myself and it is a game changer for diabetics in theme parks. I only wish I had had one for the past 40 years of park days. The G7 will give her plenty of warning that her blood sugars are dropping and she can grab something sweet (soda, juice, candy or even delicious Disneyland treats if necessary ) to quickly raise them up a bit.

Because of the number of food outlets at Disneyland and their varied menus, your daughter will be able to find lots of food options in the park that will work with her diabetic diet. If she happens to consume a little too much carbohydrate/sugar, the G7 will show her sugar levels going too high and she can go to the restroom, or to first aid, and use her insulin pen (another thing I now use and wish I had had years ago) to give herself an injection and bring her blood sugar levels back down.

Speaking of insulin and first aid, your daughter will want to make sure that the pen needles don't get too warm on what can be a very hot day in the park. Thankfully, the first aid stations in the park are staffed by extremely helpful and compassionate cast members who are happy to take the pen needles and refrigerate them for you so that they don't overheat. She can come back to the first aid station and retrieve the pen needles to use whenever she needs to. For me, my first stop of the day in the park is at first aid to refrigerate my insulin and, like I say, the cast members there are wonderfully helpful.

I hope this information gives you and your daughter a better idea of what to expect during a day at Disneyland with Type 1 Diabetes. The good news is that the tools that are available nowadays make managing a day in the park with diabetes so much easier than it was for us diabetics back in the day. I know what you and your daughter are going through in learning about and adjusting to this newly diagnosed disease and I wish you all the best in successfully adapting to this medical condition and enjoying lots of fun and exciting days at Disneyland.

 

[DisneyOma]

I would ask her doctor the questions you posted above, and schedule some appointments with a dietician or clinician that specializes in diabetes.

 

[Selket]

So last week I took my teen daughter to the ER as she was ill. The Dr came in and said it was diabetic ketoacidosis. We didn't know she was diabetic.
That was one week ago tonight. She is type 1. We are trying to come up to speed. She is getting a Dexcom G7 and currently has 2 insulin pens.

Her first question was how can she do Disneyland? What food can you eat. Can you carry your insulin pens with you? Does the insulin get too hot?

Any tips and tricks would be greatly appreciated.

Well first off - hugs and much love to you and your daughter and your family. At first it can seem like a devastating, life altering diagnosis and it's like being in a tornado. The first few months are the hardest because there's a lot to learn (about insulin, how it works, how it works for HER, perhaps getting a pump, how foods affect her BG as not everyone is the exactly the same on that). My son was diagnosed with type 1 at 26 months old and he's in his very early 20's now. He's been going to WDW since he was 2 years old and now he's actually a cast member there now with the disney college program. So your daughter cannot only do DL - she can do whatever she wants.

The amount of info is overwhelming but...eventually she can eat whatever she wants - anything. Can she eat 10 cones of cotton candy in one sitting? Well...only if that is her life goal but you know what I mean - haha! However those first months until she gets used to dosing insulin and how her body responds - plus she may be in a "honeymoon" period where her body is making some insulin still - I think it is easier to try to keep to regular meals and not a crazy number of very sweet items. Some carbs will act quickly (regular soda) and some more slowly (cheesecake or pizza for my son). I think there is a learning time which is frustrating but eventually gets easier.

She may want to look into insulin pumps - IMHO they are much easier to dose small amounts and she can dose for snacks more easily, etc. That's something to consider.

Look at FRIO cases for insulin pens. Many of us here use them and they work well.

There is a Children With Diabetes conference every summer at Disneyworld at Coronado springs - they also have regional conferences. Go check out their website: childrenwithdiabetes.com. Their programs and conferences are not just for kids but for the whole family and for adults with type 1.

I'm actually leaving to go see my son who is the CM now (the one with type 1) or I'd probably type more - haha! Feel free to direct message me.

 

[gap2368]

I will eco what the pp said about the frio and friends for life

 

[lanejudy]

My teen was diagnosed with diabetes a couple of years ago.

First -- reassure her that she can do Disneyland. It may be a little different the first couple of times but as she gets used to managing her numbers it will get easier.

Second -- when is her next visit? It looks like you may be in CA. Typically I wouldn't recommend a theme park visit within the first ~3 months, to all the individual to get used to foods, carbs, insulin dosing, etc. However it is summer vacation and this may be a local park for you/her, in which case I suggest just taking it slow. Low expectations of how much she'll do. Use it as an opportunity to really tune in to how her body reacts -- the foods, the exercise, the heat all will impact things. Take plenty of testing supplies and glucose tabs for correcting lows.

As for diet -- ask her doctor. Does she have dietary restrictions? Typically T1 doesn't have a lot restricted, though she may find that certain foods will spike her BG faster than others so she may want to avoid them. But her medical professional should help direct that conversation.

Good luck!

ETA: oh and I second the recommendation of a FRIO. Depending on how/when she doses, she may want 2 different ones -- 1 for each pen; or they do have sizes that fit 2 pens.

 

[Her Dotness]

At first it can seem like a devastating, life altering diagnosis and it's like being in a tornado. The first few months are the hardest because there's a lot to learn...

Though my DH is Type 2, I heartily agree with Selket.

It may take a good long while for your daughter and you to learn what foods work and what don't as well. The adjustment to what can feel like being thrust into a foreign culture unawares may be speedy--or not.

It was hard to be patient and confident that we could get DH maintained well enough that maybe he could eat foods that spiked his blood sugar initially. At 7 years post-diagnosis, he's well-maintained and can eat the foods that once sent his glucose way high.

Diligence, asking lots of questions, and getting accustomed to needed dietary tweaks are essential but can take much longer than you'd like. It took us nearly two years to get there.

Wishing you the needed patience. Hugs to both you and your daughter.

 

[poohnpigletCA]

I am a Type 1 Diabetic myself and have been to Disneyland many, many times through the years, so I am very familiar with what your daughter's experience will be like. Thankfully, the tools that she has been given make managing a day at Disneyland very easy for someone with Type 1 Diabetes. Here are some things she should know.

First, the greatest challenge she will face is managing her blood sugar levels with all of the exercise she will be getting walking around the park. Her biggest danger will be from her blood sugar levels dropping too low because of all the exercise. Fortunately, she will be able to monitor her sugars very easily with the Dexcom G7. I just got the G7 myself and it is a game changer for diabetics in theme parks. I only wish I had had one for the past 40 years of park days. The G7 will give her plenty of warning that her blood sugars are dropping and she can grab something sweet (soda, juice, candy or even delicious Disneyland treats if necessary ) to quickly raise them up a bit.

Because of the number of food outlets at Disneyland and their varied menus, your daughter will be able to find lots of food options in the park that will work with her diabetic diet. If she happens to consume a little too much carbohydrate/sugar, the G7 will show her sugar levels going too high and she can go to the restroom, or to first aid, and use her insulin pen (another thing I now use and wish I had had years ago) to give herself an injection and bring her blood sugar levels back down.

Speaking of insulin and first aid, your daughter will want to make sure that the pen needles don't get too warm on what can be a very hot day in the park. Thankfully, the first aid stations in the park are staffed by extremely helpful and compassionate cast members who are happy to take the pen needles and refrigerate them for you so that they don't overheat. She can come back to the first aid station and retrieve the pen needles to use whenever she needs to. For me, my first stop of the day in the park is at first aid to refrigerate my insulin and, like I say, the cast members there are wonderfully helpful.

I hope this information gives you and your daughter a better idea of what to expect during a day at Disneyland with Type 1 Diabetes. The good news is that the tools that are available nowadays make managing a day in the park with diabetes so much easier than it was for us diabetics back in the day. I know what you and your daughter are going through in learning about and adjusting to this newly diagnosed disease and I wish you all the best in successfully adapting to this medical condition and enjoying lots of fun and exciting days at Disneyland.

Thank you! This is so helpful

 

[poohnpigletCA]

I would ask her doctor the questions you posted above, and schedule some appointments with a dietician or clinician that specializes in diabetes.

She has upcoming appointments but everything is weeks to months out. The allocated time is so limited and we are trying to learn so much. This board offers helpful tips from people who have been there and done that. But we are certainly following up with her medical team.

 

[poohnpigletCA]

Well first off - hugs and much love to you and your daughter and your family. At first it can seem like a devastating, life altering diagnosis and it's like being in a tornado. The first few months are the hardest because there's a lot to learn (about insulin, how it works, how it works for HER, perhaps getting a pump, how foods affect her BG as not everyone is the exactly the same on that). My son was diagnosed with type 1 at 26 months old and he's in his very early 20's now. He's been going to WDW since he was 2 years old and now he's actually a cast member there now with the disney college program. So your daughter cannot only do DL - she can do whatever she wants.

The amount of info is overwhelming but...eventually she can eat whatever she wants - anything. Can she eat 10 cones of cotton candy in one sitting? Well...only if that is her life goal but you know what I mean - haha! However those first months until she gets used to dosing insulin and how her body responds - plus she may be in a "honeymoon" period where her body is making some insulin still - I think it is easier to try to keep to regular meals and not a crazy number of very sweet items. Some carbs will act quickly (regular soda) and some more slowly (cheesecake or pizza for my son). I think there is a learning time which is frustrating but eventually gets easier.

She may want to look into insulin pumps - IMHO they are much easier to dose small amounts and she can dose for snacks more easily, etc. That's something to consider.

Look at FRIO cases for insulin pens. Many of us here use them and they work well.

There is a Children With Diabetes conference every summer at Disneyworld at Coronado springs - they also have regional conferences. Go check out their website: childrenwithdiabetes.com. Their programs and conferences are not just for kids but for the whole family and for adults with type 1.

I'm actually leaving to go see my son who is the CM now (the one with type 1) or I'd probably type more - haha! Feel free to direct message me.

Thank you I will look into Frio case. Not sure why it didn't occur to me that not only do people do Disneyland with diabetes they work at Disneyland to. Awesome.
A week in and her number are in the upper 200 I'm sure once she gets more stabilized we can look into a pump. Thank you

 

[poohnpigletCA]

My teen was diagnosed with diabetes a couple of years ago.

First -- reassure her that she can do Disneyland. It may be a little different the first couple of times but as she gets used to managing her numbers it will get easier.

Second -- when is her next visit? It looks like you may be in CA. Typically I wouldn't recommend a theme park visit within the first ~3 months, to all the individual to get used to foods, carbs, insulin dosing, etc. However it is summer vacation and this may be a local park for you/her, in which case I suggest just taking it slow. Low expectations of how much she'll do. Use it as an opportunity to really tune in to how her body reacts -- the foods, the exercise, the heat all will impact things. Take plenty of testing supplies and glucose tabs for correcting lows.

As for diet -- ask her doctor. Does she have dietary restrictions? Typically T1 doesn't have a lot restricted, though she may find that certain foods will spike her BG faster than others so she may want to avoid them. But her medical professional should help direct that conversation.

Good luck!

ETA: oh and I second the recommendation of a FRIO. Depending on how/when she doses, she may want 2 different ones -- 1 for each pen; or they do have sizes that fit 2 pens.

Thank you for the help. We have nothing currently planned but we're hoping to go in October.

They sent her home from the ER with a very restricted diet. They are trying to bring her numbers down. Hopefully when she sees the dietician next month we will have some clearer directions.


As everything is up in the air and kinda scary right now having the hope of disneyland again is something positive to look forward to.

 

[ttintagel]

I was diagnosed as a teen. While this was more years ago than I care to admit, and treatment options are unimaginably better now than they were back then, I would say it took me about a year to feel truly at home in my altered body. The teen years are hard on the body to begin with! But it really sounds like your family is on top of things and you should be enjoying Disneyland again in no time.

 

[poohnpigletCA]

Also some guidance with DAS please. I know we don't state diagnosis but needs. I'm not even sure how to express that currently as her numbers are all over the place and she is still currently signed off of work. Soonest we would be looking at is October. I feel like she needs something happy to look forward to. Everything is overwhelming right now.

 

[gap2368]

Also some guidance with DAS please. I know we don't state diagnosis but needs. I'm not even sure how to express that currently as her numbers are all over the place and she is still currently signed off of work. Soonest we would be looking at is October. I feel like she needs something happy to look forward to. Everything is overwhelming right now.

You have to come up with what to say as we csn not it breaks the rules

 

[poohnpigletCA]

Sorry not trying to break rules. I do not know the medical verbage, and perhaps we don't need it.

 

[gap2368]

f you think you may need the DAS you will have to let the CM know why she needs to wait out side the lines using none medical words as the CM are not medically trained

you might find it helpful to start out not using it and when/if you run into problems then you can go and exspain what problems are causing you to leave the lines

 

[Her Dotness]

While I certainly understand your desire to give her something happy as a goal, I suggest holding off for 6 months or maybe longer. October seems quite soon to me, given how much the excitement of travel, of returning to Disney, etc. can upset what stability you may have achieved by then.

We had such a tough time learning to count carbs and getting DH stabilized well enough to consider the possible impact of a week of restaurant food that we didn't plan a Disney trip until past a year since his diagnosis.

The first 6 months particularly can seem like an endless experiment to figure out what foods are tolerated well and which send blood sugar rocketing higher than the Space 220 flight.

No, you won't need any medical lingo at all. Disney doesn't want to hear that for evaluating need for the DAS.

As resilient as teenaged bodies can be, you might well find that simply being extra careful with health-related precautions anybody ought to follow in Florida's or California's climate will be sufficient. You just don't know right now what she may need, which is unnerving. The more time you take to learn and try various new habits, the better able to take her back to Disney you'll be. You'll eventually get there with planning and some more effort than previously. Truly, you will.

 

[notatallmagic]

Hugs to you. My kiddo was diagnosed at age 17 with an A1C of 16. I describe it as a learning cliff; not a learning curve. The good news, as others have mentioned, is that there are so many resources, wonderful people, and life-saving technologies now available; but just breathing in and out is overwhelming in the beginning.

I wholeheartedly agree with so many comments; yes to the Frio; yes to the awesomeness of DexCom (although my kiddo can drop super quickly, so maybe set your low alarms a little higher to give you time to treat?); yes to dropping in the parks with heat and exercise; yes to carrying low snacks all the time and packing extra supplies; yes to the in park First Aid stations being awesome.

A couple of added thoughts on diet - in the beginning with the super high A1C, my kiddo also had to be careful what she ate. There are lots more offerings now for keto/low carb type diets; just be aware of hidden sugars. There are lots of discussions here, and a T1 Diabetics Do Disney Facebook page as well.

I agree in the beginning, having something to look forward to is super important. Feel free to message me with any questions. For us, with some hypo-unawareness and super sudden drops, the DAS is life-saving and necessary. There are lots of discussions about that here too. Hugs to you. It's an overwhelming time but it does get better.

 

[lanejudy]

Also some guidance with DAS please. I know we don't state diagnosis but needs. I'm not even sure how to express that currently

Sorry not trying to break rules. I do not know the medical verbage, and perhaps we don't need it.

No "medical verbage" needed. Plain Jane words; the CMs are not nurses or doctors or any kind of medical professionals, they don't need to know about her numbers or anything like that. They need to know what happens (or what are you concerned may happen) while she waits in a standard queue environment. And you can't request DAS until no sooner than 30 days prior, so if you think an October visit then you have plenty of time to figure out what to say that is relevant at that point. What she's going through now should stabilize quite a bit by then.

Pay attention at some outdoor events you do this summer -- a local swimming pool, or a concert in the park, or a local festival. What happens? How does she react? And as @gap2368 suggests, maybe you will simply need to try DL without DAS and then if challenges arise go to Guest Relations and explain that.

As a note... many folks with T1 or T2 diabetes do not use DAS. So she may be just fine without.

 

[poohnpigletCA]

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.