Newly diagnosed 5 year old type 1 Diabetic :(

[Mich Mouse]

My heart is breaking for my little boy who was diagnosed 19 days ago. I was planning on taking him to Disney this summer but am feeling overwhelmed just leaving my own home. Has anyone been there, done that that might be able to encourage me here? How can Disney help? Would a DAS card be issued for his disease? He is insulin dependent and one of my real fears is of going low in a long line and passing out.

I am pretty much a mess about this whole thing and doubting that I can do it, but just can't bear disappointing my beautiful boy.

Help, please?

 

[OurBigTrip]

My heart is breaking for my little boy who was diagnosed 19 days ago. I was planning on taking him to Disney this summer but am feeling overwhelmed just leaving my own home. Has anyone been there, done that that might be able to encourage me here? How can Disney help? Would a DAS card be issued for his disease? He is insulin dependent and one of my real fears is of going low in a long line and passing out.

I am pretty much a mess about this whole thing and doubting that I can do it, but just can't bear disappointing my beautiful boy.

Help, please?

If a DAS is issued, it will be issued based on needs, not on diagnosis. You need to be able to articulate why he can't wait in the regular lines.

 

[carolinainmymind]

Our family's thoughts and love are with you guys.

My oldest (7 now) lives with T1d. Dx'd at 3 years old. Our whole family has learned to work with this disease. The first weeks are the hardest. It gets more routine , I promise.

Do disney! It is worth it. For us it is an awesome way to have fun and not let diabetes run our lives.

We've done Disney every year since dx. We did it once without Das (or Gac before ) and with Das ever since. If you use it properly it makes Disney doable for a parent who manages t1 for a small child.

Pm me with any questions.

 

[dawnhaze]

I suffer from chronic hypoglycemia myself, but I've helped a couple of friends plan Disney trips for their type 1 kids, and it's totally doable!

If your main worry is his sugar getting low, your best bet is to keep something with you that he can eat or drink if necessary. I'd also make up a loose time schedule for meals and snacks, do your best to keep him hydrated, and try to test regularly throughout the day. You might also check into Frog Toggs cooling gear if heat affects him particularly badly, it's worse for some kids than others.

I don't know if they would issue a DAS for him or not, but if you plan to use a stroller - I know 5 is sort of on the cusp for people's decisions on that topic - you might try to get a stroller-as-wheelchair tag even though his needs are not strictly mobility-related. Little legs wear out quicker and exhaustion can affect blood sugar, plus it would allow you to keep his supplies close by more easily. And again, if heat is a big problem, you could also clip one of those battery operated fans on the stroller to give him a personal breeze.

 

[Jen_in_NH]

I'm sorry to hear about his diagnosis. My son was 20 months at diagnosis, and is 7 now. I still remember how overwhelmed I felt.

If you haven't, go to www.childrenwithdiabetes.com. There are a lot of people on the forums. You can find lots of info, as well as lots of parents that understand.

As far as Disney, we've taken our son 4 times since diagnosis. The first trip was a bit overwhelming with planning, but easier than we expected. You will not be able to get carb counts from Disney - we found that having the Calorie King app and a collapsible measuring cup worked fine. As far as a DAS/GAC - we have never asked for one, nor needed one.

Jen

 

[mackay_j]

Had to post back to you- Hang in there- I PROMISE it gets better. My DD was diagnosed aged 7 and she is now 21 and today has just left to go on holiday with friends surfing in France.

When she was first diagnosed, I was devastated and could barely hold myself together and not cry, and now although we still text her to make sure and check she is up in morning (she lives away at uni), she lives a pretty normal life now (going on the pump made a huge difference to her ). Like you, just after she was diagnosed (6 weeks later) we were meant to be going our first trip to Disney world and we are in the uk . I wanted to cancel but her consultant talked me out of doing so with the following

"She has to learn to live with this without allowing it to control her life and without thinking that it will ruin things in her life, or she will harbor a resentment that could grow inside her- Start out facing this disease the way you want her to face and live with it for the rest of her life. If you are scared of it and allow her to sense this - she will grow up in fear of it too."

So we flew long haul to disney and had a great time- It was the pick up she (and the rest of our family needed- we had also nearly lost our youngest 2 months previously to septicemia- in fact I am sure the it was the same infection that triggered the diabetes in my eldest as the both girls were ill with a strep throat at the same time.)

I am not saying that it will be easy - there will be hard times ahead- but it does get easier. My DD and I went on to run a support group in our area for newly young diagnosed children (until she went to uni)- We got to see time and time again people starting off in despair and move through that back to normal (a new different normal- but a calm one without the despair you are feeling now).

If you decide to go to Disney post back on here and I will gladly give you tips to try and make the trip easier-

best wishes, Jacquie

 

[Coonhound]

I'm not sure how DAS would help, or why he'd need one, but I'd definitely make sure to have all supplies needed plus drinks and snacks in your bag, in case he needs them in line.

 

[Mich Mouse]

Had to post back to you- Hang in there- I PROMISE it gets better. My DD was diagnosed aged 7 and she is now 21 and today has just left to go on holiday with friends surfing in France.

When she was first diagnosed, I was devastated and could barely hold myself together and not cry, and now although we still text her to make sure and check she is up in morning (she lives away at uni), she lives a pretty normal life now (going on the pump made a huge difference to her ). Like you, just after she was diagnosed (6 weeks later) we were meant to be going our first trip to Disney world and we are in the uk . I wanted to cancel but her consultant talked me out of doing so with the following

"She has to learn to live with this without allowing it to control her life and without thinking that it will ruin things in her life, or she will harbor a resentment that could grow inside her- Start out facing this disease the way you want her to face and live with it for the rest of her life. If you are scared of it and allow her to sense this - she will grow up in fear of it too."

So we flew long haul to disney and had a great time- It was the pick up she (and the rest of our family needed- we had also nearly lost our youngest 2 months previously to septicemia- in fact I am sure the it was the same infection that triggered the diabetes in my eldest as the both girls were ill with a strep throat at the same time.)

I am not saying that it will be easy - there will be hard times ahead- but it does get easier. My DD and I went on to run a support group in our area for newly young diagnosed children (until she went to uni)- We got to see time and time again people starting off in despair and move through that back to normal (a new different normal- but a calm one without the despair you are feeling now).

If you decide to go to Disney post back on here and I will gladly give you tips to try and make the trip easier-

best wishes, Jacquie

Yes, Jacquie we are going. I'm just not sure if I can manage the first part of the trip on my own but that can be modified. Your tips to make the trip easier would be much appreciated! There's an AllEars page I was looking at with a dietary contact number but it's outdated. Many of the links to recommended equipment do not work. I would appreciate your help so very much.

 

[buffettgirl]

You're going to feel completely differently about your son's diagnosis later this summer than you do right now. Trust me on this. The first few weeks are nuts, but it does get so much less stressful. In a month or so the worry that a low is going to come out of nowhere will be much, much less.

You can search this forum for lots of good threads about things to bring but my top tips will be this:

*Bring twice as many supplies as you think you'll need.
*Test twice as much, especially at night
*Carry all low treatments that you'll need - glucose tabs, juice boxes, pb crackers, etc.
*Use the longer lines to rest, cool down a bit, and treat lows. Your son won't feel like he's being penalized for being low by sitting and waiting.
*Test in line. Any time you feel like it. Give insulin whenever you feel like it. No one will notice.
*don't tell Disney dining about diabetes unless you want to waste half your meal explaining why your son can eat certain things, and why sugar free deserts taste like crap and why they'll make your son have a horrible tummy.
*Do get some good calorie apps for your phone - Fat Secret, Calorie King are the best. Food at disney is still food, and a cup of mac and cheese has the same carbs as a cup of mac and cheese at home.
*If it makes you more comfortable, get a portable travel food scale and portable measuring cups. They make restaurants easier early on.

Most of all, have fun. Don't let the diabetes change how you deal with Disney. Your son will remember this trip and how your family handles it. We just returned from our countless trip since my son was dx in 2005 (also at age 5) and it's honestly become just a non-issue in our lives.

Good luck!

 

[Mich Mouse]

You're going to feel completely differently about your son's diagnosis later this summer than you do right now. Trust me on this. The first few weeks are nuts, but it does get so much less stressful. In a month or so the worry that a low is going to come out of nowhere will be much, much less.

You can search this forum for lots of good threads about things to bring but my top tips will be this:

*Bring twice as many supplies as you think you'll need.
*Test twice as much, especially at night
*Carry all low treatments that you'll need - glucose tabs, juice boxes, pb crackers, etc.
*Use the longer lines to rest, cool down a bit, and treat lows. Your son won't feel like he's being penalized for being low by sitting and waiting.
*Test in line. Any time you feel like it. Give insulin whenever you feel like it. No one will notice.
*don't tell Disney dining about diabetes unless you want to waste half your meal explaining why your son can eat certain things, and why sugar free deserts taste like crap and why they'll make your son have a horrible tummy.
*Do get some good calorie apps for your phone - Fat Secret, Calorie King are the best. Food at disney is still food, and a cup of mac and cheese has the same carbs as a cup of mac and cheese at home.
*If it makes you more comfortable, get a portable travel food scale and portable measuring cups. They make restaurants easier early on.

Most of all, have fun. Don't let the diabetes change how you deal with Disney. Your son will remember this trip and how your family handles it. We just returned from our countless trip since my son was dx in 2005 (also at age 5) and it's honestly become just a non-issue in our lives.

Good luck!

Thank you, I pray I will get to that point. Your suggestions are much appreciated. Any special equipment recommendations for testing?? There is some info on Allears but it is very outdated. (Links/ phone numbers)
Do any of you use Dex continuous glucose monitors?

 

[buffettgirl]

Thank you, I pray I will get to that point. Your suggestions are much appreciated. Any special equipment recommendations for testing?? There is some info on Allears but it is very outdated. (Links/ phone numbers)
Do any of you use Dex continuous glucose monitors?

what do you mean for testing? Just bring the same meters you use at home.


We use the Dexcom G4. Love it more than life itself. (that's only a slight exaggeration). This was our first trip to WDW with it and it was fantastic how little finger poking we did while in the parks and how it helped us to catch lows before the became problems.

 

[jcano]

You're going to feel completely differently about your son's diagnosis later this summer than you do right now. Trust me on this. The first few weeks are nuts, but it does get so much less stressful. In a month or so the worry that a low is going to come out of nowhere will be much, much less. You can search this forum for lots of good threads about things to bring but my top tips will be this: *Bring twice as many supplies as you think you'll need. *Test twice as much, especially at night *Carry all low treatments that you'll need - glucose tabs, juice boxes, pb crackers, etc. *Use the longer lines to rest, cool down a bit, and treat lows. Your son won't feel like he's being penalized for being low by sitting and waiting. *Test in line. Any time you feel like it. Give insulin whenever you feel like it. No one will notice. *don't tell Disney dining about diabetes unless you want to waste half your meal explaining why your son can eat certain things, and why sugar free deserts taste like crap and why they'll make your son have a horrible tummy. *Do get some good calorie apps for your phone - Fat Secret, Calorie King are the best. Food at disney is still food, and a cup of mac and cheese has the same carbs as a cup of mac and cheese at home. *If it makes you more comfortable, get a portable travel food scale and portable measuring cups. They make restaurants easier early on. Most of all, have fun. Don't let the diabetes change how you deal with Disney. Your son will remember this trip and how your family handles it. We just returned from our countless trip since my son was dx in 2005 (also at age 5) and it's honestly become just a non-issue in our lives. Good luck!

This.

My DD was diagnosed at 3. She's a almost 12 now. Knock on wood - no loss of consciousness, no Glucagon needed. Have we had some scary lows? Yep, but we deal with it and life goes on. You'll get there. Those first few months can be terrifying finding the new normal of your life, but you'll find it. Go to WDW. Live. Show him he can do it. Could he have a low in line. Sure. We've had some great conversations with CMs while waiting for her to come up before getting in a ride.

 

[mackay_j]

1. test much more frequently than usual. (also may be take a test kit that also give a ketones reading as well as sugars- more important if you are using the insulin pump)
2. do not get him over heated so plan ard's for hottest time of the day- also look at the maps and find the rides/ exhibits that are in aircon buildings - go to these if you think that the heat is affecting his sugars.
3. make sure and carry extra glucose tablets/drinks also plenty snacks
4. A das may help if it gives you an alternate place to wait out of the sun (but there are not too many rides with this at dw we have never used a gac for our dd.)
5. do not try and do too much - take it at a much more steady pace than you used too
6. do not panic if a hypo does happen - they don't take too long to bounce back! - if it does happen then take the next few hrs very slowly.
7. the first aid places allow you to use them as a rest stop - they have good air con
8.We reduced insulin dose while we are there and run my dd a bit higher than normal esp for the long haul flight (but discuss this with your doctor before planing to change any doses).
9. drink plenty water
10 take a few glucose tablets on each ride with you in case it breaks down and you get suck on it.
11. If you are on a mixtard type insulin and you have to eat at certain times make sure and go to restaurants in plenty of time for this- we got caught out once on our first visit. It took a while to get through a fast food queue and she went low while waiting.
12 on our first trip my youngest was 3 so we got a stroller - my eldest at 7 ended up using it on a few occasion as she was so tired - luckily for us she was tiny (not much bigger than her 3 yr old sister). With a 5 yr old who has just been diagnosed - I would plan to use one if you are planning to stay late in the parks.- you would be able to get a sticker/ tag for it to be classified as a wheelchair and take it in the queues it would make a good resting place if he does has to recover from any hypos - Don't worry as you all get the hang of things he won't need a wheelchair for subsequent visits - just this one while he is adjusting.

 

[dsneygirl]

My son was dx last year 6 weeks prior to our trip. (He was 14 months old) we postponed and went in Sept and Dec (the cruise as well). We have not ever used a DAS between FP+ and low season we felt no need and I am not sure how it would have helped us but many people do get one.

I agree with all the advice, test lots, bring lots of supplies, extras of everything. We have found far more lows than highs due to all the excitement and activity so there was lots of treats eaten.

Don't stress too much about your trip just yet, these first few weeks are about pure survival and the massive learning curve you are embarking on.

I am in a small FB support group for younger ones if you are interested PM me and I will see if I can add you.

My son is 2 now and just started the Dexcom last month, it is AMAZING! It's like we were navigating blind and now we can see clearly.

Big, big hugs to you mama this is a rough road but you can do it! You will be amazed at what you never thought was possible and it will now become your new normal.

 

[dsneygirl]

what do you mean for testing? Just bring the same meters you use at home.


We use the Dexcom G4. Love it more than life itself. (that's only a slight exaggeration). This was our first trip to WDW with it and it was fantastic how little finger poking we did while in the parks and how it helped us to catch lows before the became problems.

I cannot wait for our trip this fall with Dex! We only had one crazy low last year and the Dex has made those much less.

 

[chrissy92972]

I am sorry you are dealing with t1d in your family also. It is exactly 6 years ago today that my son Ryan was diagnosed at age 5.

3 weeks after diagnosis we drove from PA to Niagara Falls Canada. It was a great learning experience. He was on Humalog and Lantus Shots at the time and the calorie king carb counting book was our best friend at the time.

In August 2013 I took Ryan (age 10) and his brother and sister to Disney myself. I drove us 3 hours each way to the airport and then we flew 2 1/2 hours each way. I was nervous, but planned and planned and planned for every worst case scenerio and it all went well.

He is on the minimed pump and cgm, so I took triple the supplies needed for those, plus tons of extra Humalog, test strips, batteries, Lantus and Syringes even though they are not used with the pump just in case it failed. I also took his old pump. I took copies of prescriptions for all of his diabetes needs also. I also took an extra meter just in case.

As for treating lows, I took fruit snacks, fruit roll ups, glucose tablets etc.

We did not get a DAS card and we were there at a very hot and crowded time. If he felt "odd" I had him test. He tested many many times per day. We did not have to deal with that many lows, because for most of his meals and snacks it is a "educated" guessing game on carbs. I purposely undercovered some things to avoid the lows.

You can do it. Take 1 minute at a time. Know going in that Disney does not provide carb counts on most items.

Chrissy

 

[Mich Mouse]

Do any of you use the Accu-Chek Multiclix Device? I am looking to make this easier. My insurance does not cover it but thinking it would be a great on the go/travel lancer.

 

[mackay_j]

we used that one at one time. In truth there is very little difference between the types of lancets and meters. I would just stick to what ever you are covered by your insurance to use especially since that is the one you will have had experience using before you go. But I would buy an extra test kit to take with you in case you loose it breaks down while you are away.

 

[chrissy92972]

I agree just use what your insurance covers. Diabetes testing supplies are very expensive to pay for out of pocket.

When Ryan was first diagnosed we had the one touch ultra meter and strips and used Novolog for the first two vials, then insurance said we had to use Humalog. Now 6 years later he is back on Novolog. They are basically the same.

Now we use the Bayer Contour meter since that is what insurance covers. He gets 300 strips per month, 3 bottles of novolog, and 1 bottle of lantus to always have on hand.

We also get glucagon filled every month even though we have never used it. Insurance covers it and I keep one in the school nurse's office, 1 in the school bag that is always with him, one in the other bag that we use for shopping eating out etc, one at my parents, and one in the emergency bag (hurricane, tornado etc.). I give all of the expired to the endo's office because they use them for teaching.

Don't forget to take glucagon to Disney just in case. Did you learn about mini doses yet?

We also keep Zofran on hand at all times in case of a stomach bug. Our endo prescribed that also.

Back to meters and lancets.....since we have 5 meters going at a time (don't need to download for endo since the pump records all that info), we have a variety of lancets in different meter cases just depending on what he likes at the time or what broke or didn't break and was replaced.

It is a whole new life and day to day is never the same. I swear the way the wind blows makes his sugars do what they do sometimes.

Hang in there. You will get into a routine and find what works for you.

Chrissy

 

[Couchy]

I use dexcom and an insulin pump. The monitor allows you to see which way the sugar level is heading . I used to do shots and that was hard. Disney is so manageable with a pump and dexcom. Don't be afraid to go to wdw