Diabetic 4 year old

[mathhouse88]

Hi, everyone!

Preface: my 4-year-old son was diagnosed with t1d fairly recently. He does great with it overall and is a very brave boy, but because he's so small (and still using the injection method--4-5 shots per day, no pump), no two of our days are the same. Perhaps it will always be this way, but I'm hoping he'll become more stable as he grows.

We're heading to WDW in May (woohoo!) for a week (staying at Fort Wilderness). Any tips for WDW with a young type 1 diabetic would be most appreciated! I've done some searching around here and other places online, and have decided a few things already:

-We will be requesting a DAS pass. Long lines (particularly in the heat and sunshine) would most assuredly make his blood sugar even wackier and less predictable than usual. We will keep all of his necessary supplies with us, but there's only so much you can do with extra sugar (or extra insulin in case of a persistent high) if you aren't first addressing the main problem (in the case with long lines: heat).

-We'll be getting FRIO cooling cases for his insulin.

-We'll be planning plenty of indoor/cool activities and attractions throughout the day. His meal times have to stay pretty regular to maintain steady blood sugar (another--minor--reason for DAS pass).

But that's all I know of for sure at this point! I'm currently on the hunt for the best small bag to keep his supplies in while we're in the parks...something that will be easy for us to take on rides. Suggestions for that and any other ideas in general are welcomed!

 

[amwildwood]

My son needs to carry epipens. We use a light weight travel day pack/back pack for parks and really all other outings. We keep safe snacks, his epipens, and inhaler in there. While not waterproof, they seem to be water resistant.

The backpack brand name is New Outlander bought at Amazon. We've had them for years and his daily use one is holding up really well. We used to have the travel/packable ones from Eddie Bauer, but it didn't last as long.

https://www.amazon.com/Outlander-Pa...ZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ&th=1&psc=1

 

[redberyl]

The heat, increased activity, and just the general excitement are likely to cause more fluctuations than usual. Bring more supplies than you would normally need so you can test and treat a lot more often. Also consider getting a stroller as wheelchair tag so he can stay in his stroller and rest in lines if neccessary. Even with das, the walk from the start of the queue to the loading area can be long for some lines, and can easily take 15-20 minutes, so taking the stroller into the line with you can be useful. Last i heard, disney doesnt provide carb counts so it may be helpful to look up menus, or research popular treats and do some carb counting before you go.

 

[gap2368]

I would ask for a stroller as a wheelchair tag so he has some where to sit when he is in lines might do better then the DAS talk to his endo about giving less Basel insulin and or change his I /C while at Disney

 

[mathhouse88]

My son needs to carry epipens. We use a light weight travel day pack/back pack for parks and really all other outings. We keep safe snacks, his epipens, and inhaler in there. While not waterproof, they seem to be water resistant.

The backpack brand name is New Outlander bought at Amazon. We've had them for years and his daily use one is holding up really well. We used to have the travel/packable ones from Eddie Bauer, but it didn't last as long.

https://www.amazon.com/Outlander-Pa...ZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ&th=1&psc=1

This one looks great, thanks!

 

[mathhouse88]

The heat, increased activity, and just the general excitement are likely to cause more fluctuations than usual. Bring more supplies than you would normally need so you can test and treat a lot more often. Also consider getting a stroller as wheelchair tag so he can stay in his stroller and rest in lines if neccessary. Even with das, the walk from the start of the queue to the loading area can be long for some lines, and can easily take 15-20 minutes, so taking the stroller into the line with you can be useful. Last i heard, disney doesnt provide carb counts so it may be helpful to look up menus, or research popular treats and do some carb counting before you go.

Great tips! I've been looking over menus for the places we plan to eat...doing an official carb count for each meal is a good thought.

I'm also going to look more about the stroller as a wheelchair thing. His issues aren't mobility related at all, but you're right that it might help in line.

 

[mathhouse88]

I would ask for a stroller as a wheelchair tag so he has some where to sit when he is in lines might do better then the DAS talk to his endo about giving less Basel insulin and or change his I /C while at Disney

Definitely going to check about reducing his basal. Good idea! We will consider stroller as a wheelchair too, but I'm sure that being able to wait somewhere cool rather than in some of the lines that can be long and hot will be essential in keeping him steady. If only they made air conditioned strollers!

 

[DisSurfer878]

If you instagram, look up t1junebug on there. It's run by the mom of type 1 6 year old who goes to Disneyland and Disney World frequently. She can likely offer you tips. They even have a diabetic alert dog named Moxie.

 

[DisSurfer878]

Definitely going to check about reducing his basal. Good idea! We will consider stroller as a wheelchair too, but I'm sure that being able to wait somewhere cool rather than in some of the lines that can be long and hot will be essential in keeping him steady. If only they made air conditioned strollers!

The vast majority of WDW lines are indoors with AC

 

[mathhouse88]

If you instagram, look up t1junebug on there. It's run by the mom of type 1 6 year old who goes to Disneyland and Disney World frequently. She can likely offer you tips. They even have a diabetic alert dog named Moxie.

So cool! Checking that out now.

 

[mathhouse88]

The vast majority of WDW lines are indoors with AC

So thankful for this! Dumbo and Toy Story Mania in particular come to mind as far as great queues go. I'm also thankful for the DAS pass when it comes to rides like Slinky Dog, Tomorrowland Speedway, Kilimanjaro Safari, Spaceship Earth, etc.

 

[treemi01]

I will start by saying you have a great start on the planning and great ideas!

That being said, you might want to prepare for the fact that they may say no to the DAS...just in case. I’m sure this will be deleted because my last post that said these words (wheelchair, blood sugar, and seizures) was deleted because “you can’t use personal medical information on this board-or I can’t...everyone else does.), so I hope you see it first. My daughter uses a wheelchair, has seizures from the heat and has a different condition that is very similar to T1D (we use a cgm, are on a strict eating schedule every few hours day and night, have to check ketones several times daily, and have to count all carbs). She also has a whole host of other medical conditions. I was told by almost everyone that my daughter will not qualify for a DAS.

Don’t get me wrong, I think T1D could be a valid reason, it just depends on how much the cast member you get understands the disease. I’d have a back up plan just in case. When we found out DAS isn’t an option for us, it took a bit of reworking, but since it was in advance of our trip, we had time to make a new plan.

 

[gap2368]

I will start by saying you have a great start on the planning and great ideas!

That being said, you might want to prepare for the fact that they may say no to the DAS...just in case. I’m sure this will be deleted because my last post that said these words (wheelchair, blood sugar, and seizures) was deleted because “you can’t use personal medical information on this board-or I can’t...everyone else does.), so I hope you see it first. My daughter uses a wheelchair, has seizures from the heat and has a different condition that is very similar to T1D (we use a cgm, are on a strict eating schedule every few hours day and night, have to check ketones several times daily, and have to count all carbs). She also has a whole host of other medical conditions. I was told by almost everyone that my daughter will not qualify for a DAS.

Don’t get me wrong, I think T1D could be a valid reason, it just depends on how much the cast member you get understands the disease. I’d have a back up plan just in case. When we found out DAS isn’t an option for us, it took a bit of reworking, but since it was in advance of our trip, we had time to make a new plan.

I am pretty sure your post was edited becuse you gave a script on what you were going to say when asking for a DAS script on what to say what you are going to say for a DAS is not allowed. The DX dose not matter what matter is the need for the DAS. The fact someone has T1D dose not get them the DAS it is the need behind the DX the OP will have to let the CM know her need to wit out side the lines and why she thinks her child’s needs too.

 

[mathhouse88]

I will start by saying you have a great start on the planning and great ideas!

That being said, you might want to prepare for the fact that they may say no to the DAS...just in case. I’m sure this will be deleted because my last post that said these words (wheelchair, blood sugar, and seizures) was deleted because “you can’t use personal medical information on this board-or I can’t...everyone else does.), so I hope you see it first. My daughter uses a wheelchair, has seizures from the heat and has a different condition that is very similar to T1D (we use a cgm, are on a strict eating schedule every few hours day and night, have to check ketones several times daily, and have to count all carbs). She also has a whole host of other medical conditions. I was told by almost everyone that my daughter will not qualify for a DAS.

Don’t get me wrong, I think T1D could be a valid reason, it just depends on how much the cast member you get understands the disease. I’d have a back up plan just in case. When we found out DAS isn’t an option for us, it took a bit of reworking, but since it was in advance of our trip, we had time to make a new plan.

Interesting! It sounds to me like your daughter would qualify based on those issues. Did you ever request DAS at guest services?

 

[mathhouse88]

I am pretty sure your post was edited becuse you gave a script on what you were going to say when asking for a DAS script on what to say what you are going to say for a DAS is not allowed. The DX dose not matter what matter is the need for the DAS. The fact someone has T1D dose not get them the DAS it is the need behind the DX the OP will have to let the CM know her need to wit out side the lines and why she thinks her child’s needs too.

I'm definitely planning to explain his specific issues when it comes to lines. I can imagine that many adult diabetics (especially those who have lived with the disease for many years) would have no added difficulty waiting in a long line. But because he is so little and recently diagnosed (I'm sure everyone can imagine the logistical difficulty of testing, injections, and otherwise playing hospital while in a hot and crowded queue), I'm pretty confident that we'll be able to get a pass for him.

Sorry, just thinking out loud (or...via text, haha) a little in order to explain that I know the circumstances, not the diagnosis, are what's needed here.

 

[treemi01]

I am pretty sure your post was edited becuse you gave a script on what you were going to say when asking for a DAS script on what to say what you are going to say for a DAS is not allowed. The DX dose not matter what matter is the need for the DAS. The fact someone has T1D dose not get them the DAS it is the need behind the DX the OP will have to let the CM know her need to wit out side the lines and why she thinks her child’s needs too.

Well, not really. I had 4 sentences. One was, “I’d like to request a DAS,” and another was, “My daughter has a physical disability, but that’s not why I’m requesting it.” The other 2 were why we needed it. 1) because she has seizures brought on by heat and 2) because she has blood sugar issues that require frequent monitoring and eating regularly.

Pretty much what this OP said...minus the seizures. I was told I couldn’t say that and that we weren’t eligible.

I have no clue why or why the word “wheelchair” had to be deleted when it didn’t even really relate to the post. (Not that I’m bringing up old posts, I have a point I’m getting to) But, since it was not there, people suggested we get the stroller as wheelchair pass, which was already mentioned in responses here. I think that might be a great suggestion for OP since blood sugar can go haywire for a number of reasons...one being activity...and controlling that might help a lot!

I’m just trying to help the OP with my experience. I just said why we couldn’t wait in lines, which were the exact same reasons the OP mentioned. I never even mentioned my daughter’s diagnosis...which isn’t any of those things, those “symptoms” are just why we can’t wait in line.

 

[treemi01]

Interesting! It sounds to me like your daughter would qualify based on those issues. Did you ever request DAS at guest services?

No, we did not. Our trip was just fine, and we had a great time. I spent a couple of hours in the park with our daughter and then we had to leave due to her medical issues and just not having a great way to take care of things. That being said, we get to go back to WDW in September for something else! We managed fine without the DAS, but we had to spend a lot of time apart and didn’t get much family time. When we go again, I think we will either ask for a DAS (although, I admit, I’m super freaked out by it now. Her diagnosis itself is so rare that no one has ever heard of it-and I know I wouldn’t mention that anyway-but I’m used to no one having a clue what I’m talking about. It’s frustrating on a daily basis. I don’t want to risk no one understanding in WDW so I probably won’t do a DAS.) or we’ve learned a few things that might help us spend more time together.

I’m hoping next time will be calmer with crowds and maybe we can do more things together. I do think a DAS would help, but, well, it’s just tough. My DH wants to leave my daughter home next trip (she qualifies for respite care through her state waiver) but I think we should bring her because she absolutely loved it, and I think I can do better next time!

 

[treemi01]

I'm definitely planning to explain his specific issues when it comes to lines. I can imagine that many adult diabetics (especially those who have lived with the disease for many years) would have no added difficulty waiting in a long line. But because he is so little and recently diagnosed (I'm sure everyone can imagine the logistical difficulty of testing, injections, and otherwise playing hospital while in a hot and crowded queue), I'm pretty confident that we'll be able to get a pass for him.

Sorry, just thinking out loud (or...via text, haha) a little in order to explain that I know the circumstances, not the diagnosis, are what's needed here.

I totally get this! My DH is diabetic, and no, he has no issues waiting in lines or just incorporating diabetes into his regular day. Kids are a totally different issue, and heat/more walking than usual/less sleep than usual/being less careful (or at least less certain) of diet are all things that can totally throw everything off!

We were just in WDW and my daughter tended to run higher than usual (which is actually a good thing in her case). I have no clue why! She can walk, but not far, so she uses a mobility device, so increased activity wasn’t really an issue in our case. I’m sure that might make a difference for you, though! We don’t really know why she was higher than her regular, but she was, so you never know!

 

[mathhouse88]

No, we did not. Our trip was just fine, and we had a great time. I spent a couple of hours in the park with our daughter and then we had to leave due to her medical issues and just not having a great way to take care of things. That being said, we get to go back to WDW in September for something else! We managed fine without the DAS, but we had to spend a lot of time apart and didn’t get much family time. When we go again, I think we will either ask for a DAS (although, I admit, I’m super freaked out by it now. Her diagnosis itself is so rare that no one has ever heard of it-and I know I wouldn’t mention that anyway-but I’m used to no one having a clue what I’m talking about. It’s frustrating on a daily basis. I don’t want to risk no one understanding in WDW so I probably won’t do a DAS.) or we’ve learned a few things that might help us spend more time together.

I’m hoping next time will be calmer with crowds and maybe we can do more things together. I do think a DAS would help, but, well, it’s just tough. My DH wants to leave my daughter home next trip (she qualifies for respite care through her state waiver) but I think we should bring her because she absolutely loved it, and I think I can do better next time!

We had our best trip ever in September 2018! Crowds (excluding Labor Day) are typically much easier to deal with. If your daughter loved it last time, I definitely think you should take her back! The Disney experience is just like no other. Also, if I were you, I would talk to guest services about her issues with waiting in line. I totally understand the uneasiness and concern with being misunderstood. I'm a pretty reserved and quiet person by nature and really hate social conflict of any kind. But the way I see it is that I'm my son's advocate, and if there's any way for him to have a more typical "waiting for a ride" experience (i.e. one that does not involve dangerous drops in blood sugar, potential unconsciousness, and needles ranging from small to big), I'm going to try my best to make sure that happens. So I'll tell guest services the specifics of why a long, hot line could be dangerous for him...then I'll let them decide yes or no. But I really feel that in your daughter's case and my son's, the DAS is needed and will be granted.

 

[SteveMouse]

Do be aware there are not a lot of inside areas to sit and wait. Stand and shop, sit and eat, yes.