Question on child with diabetes

[AMVmom]

Hello! I've been poking around the site and read alot about the first aid stations and the hotels accomodations for insulin storage. My 4 year old son was diagnosed with type 1 diabetes 2 months ago and this is the first time we are going to Disney with him having been diagnosed. We'll be going in March. We booked reservations at POP Century for 7 nights. Should I call ahead and ask for a fridge in the room for his insulin? Should I invest in a bag to carry his insulin around? Should I get a GAC? How would that even benefit him (do I show it at the first aid stations so they will let me store the insulin?). I don't consider him a boy with a disability and was going to treat him as usual but I've been getting conflicting advice from friends. I want him to have the best time he can without keeping him back and making him stand out from other kids. I'd appreciate any advice from parents who've gone through this already! Thank you in advance!

 

[Princess Disney Mom]

Let them know at Pop Century you need a medication fridge. They have small ones for free just for meds. Check with Disney if the first aid stations have fridges in the parks. If not you can take ice packs and store in a locker.
You will not need a GAC card.

 

[Cheshire Figment]

Hi and to disABILITIES!

First thing to realize is that opened containers of insulin do not have to be refrigerated; they can be maintained at room temperature for up to 30 days. Only if you are bringing unopened bottles is it a good idea to keep them refrigerated.

Explain (through reservations) that you need a small refrigerator for medicine storage. It should be provided at no charge.

Each Park has a First Aid station staffed by at least two RNs and it is open from the time the first Guests are allowed in the Park until after Park closing.
They will store any medications for you while you are in the Park, refrigerating those where it is needed or useful. They will also provide you with a private space to do any injections and have Sharps Containers available. They will provide alcohol swabs, but you must provide your own medication and syringes.

You might want to look at www.coolerconcept.com for Frio Cold Packs. I, and several others here, use them and they work very well. The inner pouch has crystals which turn into a gel when the pack is soaked in water. As the water evaporates the gel will go back to being crystals. It will keep the temperature in the pack around 60, which is very good for mst medications, and will keep them cold for up to 48 hours.

Normally if I know I will be giving myself an insulin shot I will load a syringe in advance and only take the syring (and an alcohol swab) in the cold pack instead of carrying around the bottles. However, I am on a fixed dose so this may not apply if his dose varies.

 

[gardendame]

Pop Century will put a fridge in your room, if you tell them that you have medication to keep chilled. There is no charge.
As far as a bag with insulin for the parks, that all depends on his dosing schedule. You will, however, need a way to carry his meter, strips and lancet device so that you can do a blood sugar check at meal time and/or if he feels low (at age 4, you will have to watch for the signs, as I am sure you know!) At that age, and with the excitement of the day, the visible signs of a low may not be apparent until the low is extreme. Carry juice boxes, airhead candy, etc., for a quick treatment for the low. We carried all of this in a small, drawstring-type backpack.
And, YES, get a GAC. You may not have to use it, but you will have it should you see that it may be helpful. There is nothing worse than standing in a 90 minute wait for "Soarin" and having to get out of line because of a blood sugar crisis. No one will "hold" your spot in line. For the time of year you are going, the lines should not be very long, and the temperatures should not be too extreme, so it is possible that you will not need the GAC. There is no penalty for getting one and then not using it.
I have two diabetic kids so, believe me when I tell you, get the GAC. Some people on this board suggested I get one, while others insisted that diabetes was not an illness that should justify one. Only you can know your situation. Since your son is newly diagnosed, his blood sugar levels will be very unpredictable - even with the best of planning.
There are quite a few parents of diabetic children on these boards! People are very helpful and willing to share info, even not Disney related. I'm sure they will pop in and offer you encouragement.
Enjoy your trip! We love Disney!

 

[SueM in MN]

If you have not read the information about GACs in post #6 of the disABILITIES FAQs thread, I would suggest you check that out. There is a link to the disABILITIES FAQs thread in my signature.
GACs are not given for diagnosis, but for needs. Some people with diabetes feel they do not need a GAC and don't get one. Other people do have needs that can be met with a GAC.
You might also want to look in post #3 of the disABILITIES FAQs, where there are some links to past threads.

As gardendame mentioned, because he is newly diagnosed and you are all learning, plus the fact that he is only 4, his blood sugar may fluctuate a lot more than it will after you all have had more time dealing with diabetes. You can always request one and use it as 'insurance'; not necessarily used, but there if you need it.

As was already mentioned, you don't need a GAC to use First Aid. Considering where First Aid is in each park, you may not want to store his insulin there. Using it might mean backtracking to get there. Most insulin is stable for at least one month stored at room temperature - since the outside temperature while you are walking around the parks is likely to be considerably warmer than that, you may want to look into one of the packs that were mentioned.

 

[mechurchlady]

Also know where the companion bathrooms are so you can have privacy if you need to take care of his sugars or testing. The law is that any person even of opposite gender may accompany a disabled person into a restroom. The baby centers also have areas where you could do testing and stuff in an emergency.

As gardendame mentioned carry small juice boxes as well as candy for a quick sugar boost. Carry a small tube of cake icing for sugar lows which is a cheap and quick way to raise sugars and if not have glucose pills. Always have protein with the sugars to help them not go down fast. Mom and I and a lady I knew all had lowered sugars later on in the day after eating beans.

I read that a mother of an autistic kid always keeps a set schedule like at home. Try to keep him on the same routine as at home but you will have to compensate for the extra walking and stress. You could get a stroller for him then park it and do rides which would save him lots of energy. Don't baby him but do try to save him some of the walking that can add up to miles. You could even keep the bags of snacks in the stroller. Check his feet for blisters but not sure how often. Sharing is caring and if it is snack time share some popcorn with him for example. Start a family tradition of sharing so that it will be normal for him to have a bit of snack but not so much as to get sick.

If you have to leave the line then have one person inform the CM greeter and they will often arrange for you to come back to the line without the extra wait. Diabetics have limitations at times but people with limitations are called disabled yet most diabetics are able bodied and very active. I think you should get it as you can explain to the Guest Services the boy's limitations and that you may have to suddenly leave the line or show. They can then tailor the GAC to his limitations. The GAC saves CMs time by them reading the limitiations instead of having to spend lots of time talking with the guest. It is a tool and like all tools does not have to be used.

In time you will be able to read your son's sugar levels by his moods, energy level, etc. Right now I can tell mine are around 100 right now and after this site it is snack time. Don't worry as you are in good hands with WDW.

 

[Eeyores Butterfly]

I want to second about informing a CM should you need to leave the line. I worked in Fantasyland Attractions and have done this for people numerous times. If somebody had to leave the line for circumstances beyond their control, I would arrange it so they didn't have to go through it again. I wanted everybody to be able to experience the attractions.

 

[AMVmom]

Thank you for all the replys! I think I'm going to get the cooling pack and the med fridge; I don't think I can backtrack to first aid all the time especially since my 1 year old has become a monster . . . I mean typical toddler. Most of the time we just can't read Max very well. He gets very whiny when he's in the 400's but he can also be like that when he wants attention or is tired for a nap. Then he can be down to 30 and still be coloring or teasing his sisters. I guess I'm most worried about being in line and having to leave and having that impact on the 5 year old; since the hospitalization with Max, his older sister has gotten much less attention and cries a lot more, much more sensitive. I don't want her to resent him if we have to leave quickly because he is having problems.

 

[mechurchlady]

There are lots of moms here who have talked about what to do for the siblings of disabled kids who at times do not get enough attention, have their life interrupted for the disabled child, or whatever. I would suggest talking to her about his diabetes and what would happen if you had to leave lines, shows, or the park. Reassure her that if he is really sick that daddy can take her her back to the park, ride or show late. Set aside some quality time with her. Let her choose the movie you watch or have a special Mommy and Me day at a spa while dad gets the kids. At WDW you dress her as her favourite princess, give her an autograph book for collecting characters, and if you son sees her being spoiled then whisper that girls need pampering, lol.

Since you have the youngest one you might want to check out the baby swapping pass where one parent rides a coaster then the other takes the pass and rides. Good luck on your trip.

 

[bopper]

Another thing to keep in mind is a change in his level of activity. If he is going to be mostly walking, then keep that in mind when figuring the insulin dosage. If he will be in a stroller, then that is not as much activity.

 

[honugirl]

If you haven't already, I would speak to his endocrinologist and see if you need to change his ratios or anything like that for the trip. With the possibility of extra walking and stuff he may need more or less insulin than he uses at home. It's also hot there (although, I don't think quite so much right now) so that can play into things. Make sure he stays hydrated too because I think that can wreak havoc with his blood sugars. Have a good time.

 

[visitingapril09]

First, have a wonderful time. I have a child who is very medically complicated and a daughter with type 1 who was diagnosed at 10. She is now 14 and uses an Animas pump. She went to Disneyland this past April when still on injections. She carried a small backpack with all supplies and testing and lows. We cut back her am insulin dose a bit to compensate for walking alot. We were, however, turned down when we asked for a GAC for her for the reason of lows in lines, needing to leave to test etc. We were told that, if that shoudl occur, we need to tell the CM and they would give us our place in line again but they would not issue a GAC. Perhaps you will have different luck. Again, have fun. The CWD board is very helpful for all diabetes management issues.

 

[Jeff Fillmore]

Thanks for this thread- we are Disney regulars and just found out our 8 year old daughter has Type-1 in October. We have been to the parks several times since then but it is different for sure. Lots more planning.

 

[Schmeck]

Just to note - a GAC may not shorten your wait in line, (may even make your wait longer) so it is no guarantee to avoid having to leave a line. I think your best bet would be to use Fastpass where available.

I spent a great day with a young lady (age 5) with type 1 diabetes. Her mom tested her blood sugar levels in lines, and had proper snacks available on her at all times. There was no need to leave and come back, as everything that needed to be done was done in line.

 

[monica31671]

My son uses an insulin pump now, but he was on shots for almost 2 years.

His day-time shots were done using a pen-type syringe so those supplies were easy to transport. He took a nightly dose of Lantus every evening at 9:00. To make sure we stayed on track, I carried the dose in a pre-filled syringe in a case like this:

http://www.diabetesandmore.com/A-Single-Syringe-Case-Solid-P544C15.aspx

Have a great trip!

 

[Janet Hill]

I spent a great day with a young lady (age 5) with type 1 diabetes. Her mom tested her blood sugar levels in lines, and had proper snacks available on her at all times. There was no need to leave and come back, as everything that needed to be done was done in line.

I travel with my kids and Type 1 husband. He generally has everything he needs; however, once after standing in the Soarin line for 55 Min and we were close to boarding we had to leave as he had run out of Gluco Tabs. On our way out I told the attendent the problem and she gave me a pass to use on our return. Went to the food court for a coke, then went back to Soarin via the fastpass line.

 

[Eeyores Butterfly]

I could see where you might want to leave the line for a hypo even if you have tabs or Glucagon with you. When I hit 45 after the OGTT, I literally thought I was going to pass out. Hypos make me feel ten kinds of nauseous and very irritated so I don't want to be around people (really fun when it happens while I'm teaching). I find that when it happens to me I want to find a quiet place to sit down until I feel better. I would definitely not want to go on a ride, especially a high thrill ride.

Unless you don't want your child waiting with a whole bunch of other people in case she goes hypo or needs to inject, I don't really see how the GAC is going to help you since as others said it is not going to decrease your wait time on most rides. Fast pass is your friend. Also, as mentioned, CM's are very good about helping you get back in line if you have to leave for whatever reason. I did it all the time in Fantasyland.

 

[Selket]

Definitely read this website: Disney with Type 1 Diabetes: http://allears.net/pl/diabetes.htm

It is written by the parents of two type 1 kids and covers most of the bases. Their children were old than yours when dx'd so you will face some challenges that they might not cover - but they cover most.

My son was dx'd when he was 26 months and is almost 7 now. He also has a couple of life threatening food allergies (peanuts/shellfish) which make eating a challenge (dining out that is). We first took him to WDW after diagnosis when he was 3 yrs. old and we go back often.

My son is almost 7, as I said, and still doesn't often recognize his highs and lows. By the time your son is that age maybe he will - maybe he won't. But don't feel bad if *you* cannot tell either - it is a very subtle thing with many kids. And when they are excited (like at WDW) - they often do not want to stop to let you know they feel bad.

You will almost certainly have issues at WDW that you do not face at home on a routine basis. You are going when the weather is mild so that is in your favor. The heat has seemed to be the hardest thing for my son to deal with. Walking/exercise is only recently an issue (he was also hypotonic at birth and didn't walk until he was about 2 - and was not walking the parks until he was 5-6 or so). I highly suggest using a stroller for when your child wants to ride. Maybe he isn't a stroller kid but it will save some energy and perhaps prevent lows from all the exercise.

Your one year old probably won't care if he/she rides something or not but the 5 year old will (and your 4 year old). I suggest splitting up at times if your child with diabetes is having an issue.

You do NOT need to go in the bathroom to handle anything - testing, shots, whatever. Take all that stuff with you and do it where you are. If you prefer privacy - that is fine - but there is no need to do it because you worry about what people will think. We test and treat in public. I have changed his infusion set at the park and I do that at First Aid in a private room. First Aid is awesome - very helpful.

Many people here who will offer advice - are much appreciated - but also NO ONE BUT YOU knows your circumstances, issues, limitations, etc. So when it comes to getting a GAC, do what you think you need to do. You can always get one after a day or two if things are going poorly. Diabetes in a 4 year old vs. diabetes in a 10 year old or an adult is sometimes two different things all together. I find the time that we have *really* needed it was when it was very hot out (July hot). If you ever get to go to the Children With Diabetes Friends for Life conference (held in July 2009 at Coronado Springs - FYI), you may find that they have cast members on site to give families a GAC. There are guidelines issued by the conference for using it. Nothing wrong with knowing what a GAC is - whether you need it depends on your unique situation. I've said enough about that in previous posts. Anyone who tells you that you won't need a GAC does not understand that the GAC is issued for a person's issues and not for a diagnosis.

What I recommend more than anything is to go with a good touring plan. If you are going during spring break (I sincerely hope not) - you will need a good touring plan and a choir of angels on your side...heh! But seriously, we use Tour Guide Mike - and I know it is hard to follow his advice with little kids but his plan is flexible and you will NOT be waiting in any lines. You will be fast passing most things. His touring plans are without equal - IMHO.

And finally, with young kids and one with type 1 - plan now that you will *not* see it all, do it all, eat it all, experience it all, etc. Lowered expectations have served me very well - especially when my kids were young. Sometimes it is just fun to hang out and let them play in one of the interactive Epcot areas, or at the splash fountains, etc.

I wish you all the best! Feel free to email me if you have other questions.

 

[jayandstacey]

AMVmom - you're in good hands here and have lots of great advice. I would research and plan, research and plan. Take the time now and you won't lose time on vacation.

My 7 year old daughter was diagnosed at 13 months. Very young kids, like yours, can get bloodsugar numbers all over the map in this kind of situation - so I would suggest testing often - in addition to your normal times, also maybe everytime you get in line for a ride. Lots of little tweaks (a little insulin, a little sugar) will help keep you on track and help you catch any issues before they get out of hand.

I would also get some OTC ketosticks and check for ketones once a day. The fix is easy - if you see keytones, drink lots of water until they are flushed out. Again, the idea is to stay ahead of minor ketones on one day that might turn into throwing up the next day. And since you drink water to flush ketones, and throwing up gets rid of that water, that can end up with a hospital visit. Ketostix are easy, he just pees on the end of the stick. Like a litmus strip, you see the results immediately. They are also very cheap.

We took my daughter when she was 4 and had a blast. I'm sure you will too!

 

[Bethkf]

AMV mom,

You have gotten a lot of good advice, but i thought I would address your concern over the siblings reaction to diabetes management and your time. My 19 year old son was diagnosed at age 11. My daughter was 9 at the time. I understand the concern you have for your 5 year old and making sure she gets time from you as well. Although my kids were older when my son was diagnosed you can probably adjust some of what I did to fit your children's ages. My daughter loves math so I got her involved in counting the carbs and determining the ratios of insulin. She also carried glucose tabs and gel with her when we went on rides. It made her feel important to be involved in helping her brother. In fact she took the "fast food" pamphlet we got from the doctor and memorized carb counts so she could tell her brother what he needed. She also attended diabetes camp with him when she got older and LOVED it. I would highly reccommend it for both kids. For my daughter it was an eye opening experience. She had to test her blood sugar along with the diabetics and stick to similar schedule. It gave her a sense of what it was like for her brother on a daily basis. Hope this helps you.