He's a Type Diabetic insulin dependent

[mastersd]

Hi,
We have had many trips to Disney we all love it! We have always had a great time--except the last time. Our middle son was so annoying the whole time. He was moody, whiny just plain annoying. He would drink everything he could get his hands on--it was hot 90-95 everyday. We were there Aug 24- Sept 4. He went to the restroom like crazy. He would order food and not eat any of it. I am a pediatric nurse I work in a Pediatric Intensive Care Unit:: I knew something was wrong but I chased the bad thoughts out of my head. When we got home I made him pee on a ketone stick. It turned as positive as it could . I went to the pharmacy and bought glucose strips and they turned as positive as they could. Now, I am the proud new owner of a type 1 insulin dependent diabetic. So, I want to reset those memories of disney to more positive memores. We are just starting to regulate his sugars--but he's having a number of lows
Can we? Should we go again in Nov?Any advice? Word if wisdom? Thanks

 

[SueM in MN]

There are quite a few active posters on this board who have children with Type 1 diabetes who, I'm sure, will chime in with lots of good advice.
Until they show up to help you out, check out the links about diabetes in post #3 of the disABILITIES FAQs thread. I think you will find that your WDW trip may be a little different in the future because you have to plan a little , but most people report things go very smoothly for them.

 

[Bete]

If your child is experiencing lows he's not regulated yet. I would wait until he's what I call stable with his condition.

If you really want to go then I would be taking more tests everyday; so, you can cope better with the highs or lows.

My adult hubby has type 2. We carry glucose tablets. Breakfast bars work good for us, too. There are bars specifically designed for diabetics. When needed he uses these aids. It may work a little different for type 1.

 

[PatT240]

Hi Mastersd,

My son is a type 1 diabetic he was diagnosed at 7 and is now 15. If your doctor gives you the OK I would definitely go to WDW. We have traveled all over with my son, he's been to Disney several times, Mexico and various other vacations in the US and we have never had a problem, well except for a pina colada incident in Mexico but even that was taken care of with some extra insulin. I won't say that there isn't challenges to traveling with a diabetic, you definitely need to plan ahead for anything that might come up, but it can done. I hopes this helps you with your decision and that you and your family are doing well. I know this is a very difficult time for you but it will get easier.

 

[Teddys~Mom]

Hi,
We have had many trips to Disney we all love it! We have always had a great time--except the last time. Our middle son was so annoying the whole time. He was moody, whiny just plain annoying. He would drink everything he could get his hands on--it was hot 90-95 everyday. We were there Aug 24- Sept 4. He went to the restroom like crazy. He would order food and not eat any of it. I am a pediatric nurse I work in a Pediatric Intensive Care Unit:: I knew something was wrong but I chased the bad thoughts out of my head. When we got home I made him pee on a ketone stick. It turned as positive as it could . I went to the pharmacy and bought glucose strips and they turned as positive as they could. Now, I am the proud new owner of a type 1 insulin dependent diabetic. So, I want to reset those memories of disney to more positive memores. We are just starting to regulate his sugars--but he's having a number of lows
Can we? Should we go again in Nov?Any advice? Word if wisdom? Thanks

I so HEAR you here. I have a son with multiple disabilities who was diagnosed this past Wed as a severe type 1 and we are scheduled to leave on tuesday for our annual trip I am trying hard not to freak out but the inability to accurately estimate carb counts is really scaring me. I did read the links here and on allears but I can't say as I feel a whole lot calmer. I called Disney Dining this morning and had them add it to our dining reservations. I'm just thinking we'll test like crazy to try to monitor trending. His blood glucose level is on the crazy high side as opposed to low but I'm wondering how the heat will affect it all too. He is wheelchair dependent so we don't have the issue of physical activity lowering his sugars. He wont be walking and walking but I'm still anxious.

Having said all that, if I were you, I'd still go. I'm thinking that I want this to affect him as little as possible as opposed to letting it govern his life. Our endocrin has given us some instructions with regards to ammended dosing on his basal insulin to account for things like heat, excitement, etc. Fingers are crossed that it all goes off without a hitch. Good luck with making your decision.

Michele

 

[mastersd]

Hi,
Thanks everyone for your replies. I did try to post yest but I don't know what happened. Thanks PatT240 for your insight. Good luck Teddy's Mom. Bete you are right he is no where near being controlled. Our Nurse Practitioner says we can go. The problem for us besides the Oh my gosh how wll we cope,is he is in "honeymoon". Apparently, at diagnosis 5-10% of the cells are working very hard to produce insulin--as soon as a dose of insulin is given by injection the cells are stunned and don't work at all. This lasts for 2-3 weeks then the cells start producing insulin again for a short while approx 3-6 months before the autoimmune destruction of those cells is complete. While you are in the honeymoon--you have lots of lows. We thought we had a handle on his sugars, they were coming down nicely--now he's up and down all the time. The child is testing sometmes 10 times a day!!Thanks again everyone. Good luck Teddy's mom--I hope you all have a great time. By the way I booked POR for Nov3-10. I thnk I really need a psychiatrist!
Deanna

 

[tami82]

Hi,
I had replied to your post on the other board you wrote but never got an acknowledgement. anyway my 5 year old daughter has had type 1 since she was 18 months old. Started on shots for a few months and during the 5th month she was put on an insulin pump. This has been the greatest thing ever and so glad we did it. I say that you have to live your life. You have to do everything that you do prior to this happening and dont let the diabetes get in the way. It is tough in the beginning but you will master it. It certainly cannot get in the way of another disney trip and i say you have to go. Have you thought about putting your son on an insulin pump? This will make life so much easier for you & your son. My little one loves to eat all day and the pump is a life saver because she can eat whatever & whenever she wants. Especially on vacations it is great. I have survived 4 yearly vacations and have never ever had a problem. Bring plenty of juice boxes with you and always have them available in the medical bag. You have to keep watch more closely especially when your son is more active (say your are running around at a park or waterpark) and check his BG every hour or two if need be. If he is tuned into how he is feeling he may tell you how he is feeling (my 5 year old has been telling me for the past 2 years that she is tired or her "legs hurt" when she is low or going low (she is always right on in letting me know she doesnt feel right). A juice box or quick sugar will remedy this. Also make sure you have snacks on hand. I also treat my child as i would my other kids (i dont change anyones diet and let them eat normally even candy or cookies, etc. i dont deny her those things - i have to treat her like any other normal kid. She just gets a correction for everything she eats. Disney was a bit of a challenge trying to eyeball portions but i did the best that i could, sometimes she would come up high but would quickly get a bolus from the pump to bring her down. We did tons of walking so i am sure this helped alot
This is very manageable and will become part of your everyday life once you get used to it. I do highly recommend the insulin pump though.

 

[tami82]

Yes the honeymoon period can be a very crazy time. It is going to be rough in the beginning and you will always be making adjustments. It is going to take time.

 

[PatT240]

Deanna,

I can't believe we'll just miss you, we're at POR 10/28 to 11/3.

I know you where joking but a therapist isn't a bad idea. My son and I have been seeing someone for years and it really helps us cope.

You didn't mention how old your son is but if he's younger you could make a game out of testing while at WDW. When we traveled we put the destination we where at while testing in his logbook. Swimming with the dolphins 150 or lunch at tulum ruins 177 and he would look forward to showing his endo where he had been.

I know the lows are scary but being prepared will make things easier. He never leaves home without his emergency kit snacks, juice, glucose tabs, cake icing and glucagon. I've never needed the glucagon but you never know. Another thing you want to think about is keeping his insulin cool while traveling in warmer climates. I use a frio pack when we're traveling. It keeps the insulin cool not cold and you just soak the pouch in cold water to activate it, you don't need ice.

Good Luck and I hope you have a wonderful trip. Patty

 

[PatT240]

Tami, I totally agree with you. Having an insulin pump makes things so much easier. My son doesn't have the crazy highs and lows he did before he started pumping. My son is 15 and is a typical teenager and I doubt he would be correcting for every single thing he eats if had to stop for a shot.

 

[Jen_in_NH]

I'm sorry to hear about the diagnosis. I hear you on knowing what the symptoms meant, but thinking it wasn't really that. My husband and I are both medics, and when my son was sick, drinkning and peeing all the time, we just chalked it up to the antibiotics he was on. When we finally checked his blood sugar, I was shocked to find it off the scale for the meter we had on the ambulance.

As far as Disney, if your endo is OK with it, go for it. We took DS on vacation to camp about a month after he was diagnosed. The only hesitation we had was that there is no phone service there, so if we had a problem, we were going to have to pack him up and drive into town to get our cell phones to work. We never have had a problem.

The good part for you will be all of your training. Once you start to see the trends in his blood sugars, adjusting his doses to avoid the highs and lows gets to be a bit easier.

Good luck. If you haven't already, check out www.childrenwithdiabetes.com The people there are really great, and they have a ton of diabetes experience.

Jen

 

[carolmp]

Bring snacks!!

You don't say what type of insulin you are on, but if you are like we were at the beginning, you're getting quite a few lows. My DD was diagnosed when the standard insulin was a blend of humalog and NPH, so we always had to plan for when we were going to eat. Then when we threw in more activity or whatever, she would start going low.

I think the hardest part you are going to have is being able to eat when your insulin starts kicking in, and then not being able to have a snack if it's not time to eat (it's hard to pass up all of those good looking snacks!). If he starts going low and you have been standing in line for 30 minutes to get on a ride and it's another 15 minutes until you will get on, you need to be prepared to either get out of line to get some food, or have enough snacks on you to handle the low. Trust me, we've been there. My daughter always seems to go low just when we get somewhere. I think it's a psychological thing.... We think we'll take a look around and get something to eat in a bit, and she's low, so we're eating right away.

Hang in there. You'll make it. It's horrible and stressful right now, and I'm sure you are overwhelmed. It will get easier, but you will always worry. My DD has had it for 7 years now, and she handles it well. She is 15. If I had to dose her with her pump, I wouldn't know how. She takes care of all of that herself. I help her with food counts and making sure she is checking herself. She does a good job.

If your doctor/hospital has a support group, you might want to check into that. I'm not a support group type of person, but my DD loved it. She was able to spend some time with kids her age that were dealing with diabetes. They spent some time talking about what happened that bugged them, and probably more time having fun. She goes to diabetes camp every summer, and absolutely loves it. She has made two great friends that live somewhat near us, and those three girls help each other out. They get together throughout the year and have even vacationed together.

Good luck, and have fun at Disney!

 

[BCholly]

If your child is experiencing lows he's not regulated yet. I would wait until he's what I call stable with his condition.

If you really want to go then I would be taking more tests everyday; so, you can cope better with the highs or lows.

My adult hubby has type 2. We carry glucose tablets. Breakfast bars work good for us, too. There are bars specifically designed for diabetics. When needed he uses these aids. It may work a little different for type 1.

Lows in type 1 are just part of the condition. As much as we try and keep the children's blood sugar undercontrol, it isn't possible. You are comparing a type 1 child with a type 2 adult, which is a very different condition with a similar name.

A very active child will have more problems with lows and a child going through puberty has a whole other set of issues to deal with...

So waiting for the child to have no more lows is unreasonable. You might as well tell him to stop living his life.

Sorry. I had to vent.

OP I am about to go with my child who was DX in march. I will let you know how it went. And yes, we still have lows and highs.... etc. That is life with Type 1.

 

[martinpaul12]

Hi mastersd,

Well,Insulin-dependent diabetes mellitus (IDDM) is a medical term that describes diabetes mellitus that requires insulin therapy to avoid ketoacidosis. IDDM is often considered a synonym for juvenile diabetes mellitus and type 1 diabetes mellitus, though the three terms are not entirely congruent:

* Juvenile diabetes is considered an unsatisfactory and somewhat obsolete term because type 1 diabetes can develop in adults, and type 2 can occur in children.
* IDDM includes type 1 diabetes, but as type 2 diabetes progresses, in some people it may reach a degree of insulin deficiency that requires insulin treatment.

Thanks

 

[mastersd]

Hi Everyone,
Thanks again for all the replies. I appreciate reading about all of your experiences.

 

[Eeyores Butterfly]

Selket often posts here and has a child (or children, someone here has two kids) with Type 1 diabetes. They always have great information. You may want to PM them as they are pros at this.

 

[daneenm]

So sorry for your recent diagnosis! My son was diagnosed at 18 months and is now 8 (in fact we just passed his 7th anniversary of diagnosis on Sept. 10th). You don't say how old your son is. Anyone when first diagnosed, is going to be all over the place because you have not tweaked the routine yet. Even then, if you get 50% of your readings in the range you want you are doing very well. This is not an easy concept for many of us parents (I top the list) because we want to KNOW that when we take a certain action the result will be what we want, but T1D is just not that way. It is a disease that lets you see how complex the innerworkings of our bodies really are.

Also, one word of advice that I wish I had taken to heart when I was told in the beginning. T1D is nothing like T2D. In my experience they are managed very differently, so do what works for your son, not someone else. My son's T1D is nothing like your son's T1D, etc.. My son's BG drops like a rock in the heat and I just met a child who goes sky high in the heat. All this to say that disease is extremely individual - some folks like to use the phrase 'YDMV, Your Diabetes May Vary' and it is SO true. It took me a long time not to judge how I was caring for my son by what other people were doing, etc. It can drive you batty...try not to let it.

Having said that, it WILL get much easier. Whether you feel it now or not, there will even be days that T1D is not part of every thought

Knowing what I know now, I say absolutely go on your trip! I would have been petrified at the time, though. The fact is I was petrified at home too and sometimes I think distraction would have been a good thing. Also, by November, you will more used to his routine and it will feel a bit lees overwhelming.

Our tricks when traveling...

• test often. Children's BG levels can swing pretty widely quickly so you need to be more vigilant. In my opinion it is better to know often than the have a surprise low, which will be hard for all of you

• Carry lots of snacks and glucose tabs. we think granola bars are easy to pack and they are just about 15g, perfect for our son's snack. You will find what you and your son likes to keep on hand pretty quickly.

• Carry double of all of your supplies

HAVE FUN!

You should make T1D fit into your lives, not rule them. If you would like to chat privately at any time, please feel free to PM me.

 

[Selket]

You've gotten some great advice - I think you will do fine with a trip to WDW or anywhere else. Just don't try to "do it all" and be prepared to have more down time, stops for breaks, etc. Utilize the First Aid stations in the parks if your child needs to rest or wants some privacy for testing or treating. I am not suggesting you need to trek to 1st Aid for that - please do test and treat and give insulin anywhere you feel comfortable (we routinely test BG in lines, etc.). We have used 1st Aid to change his infusion set and to take a break if the weather was really hot. We usually just end up shopping though if it gets hot - as we like to shop.

The ONE thing you MUST do is go to the Children With Diabetes website at http://www.childrenwithdiabetes.com. There are discussion boards there that are just wonderful - and a chat room as well (look for Ellen, Wendy and perhaps Jen still hangs out there too). The CWD folks hold their annual conference called "Friends for Life" in Orlando every summer and every other summer it is at Disney - in 2011 it will be back to Coronado Springs. This is a HUGE family conference with stuff for the kids and adults and it is just amazing and awesome to come together with so many families with kids and adults with type 1. Zurg and Zurg's Wife - if they are still posting here - have written a bit on both the CWD conferences and doing Disney with Type 1: http://allears.net/pl/diabetes.htm

You have to join us as the next FFL - at the Marriott World Center in July 2010 in Orlando and 2011 at CSR.

I have lots of posts on doing disney with type 1 - which are linked to in the FAQ.

 

[mastersd]

Hi,
Thanks again everyone for posting. I am getting more nervous as we get closer. We had our last teaching appointment yesterday. Ryan has been a diabetic for 1 month! Now I sort of know how to manage him--how will I count the carbs in disney. Is there nutritional info anywhere? Will the disney dining plan let him have an appy instead of a dessert? I wonder what the change in activity level will do to his sugars. I think I may have jumped the gun booking this trip. I felt so guilty, like I missed something. Plus I felt really bad that I found him so annoying when it wasn't his fault. He still is annoying sometimes, the insulin didn't help that! I really appreciate all of the replies--even if I don't always reply back. By the way, I did read almost everything on the links selket posted--thanks
Deanna

 

[Selket]

I think the Disney with Diabetes website by the Badshoes have all the nutritional info that Disney gives out. Most of us just guess at the carb counts by using some other type of book that has fast food info in it - like the Calorie King books.

The ice cream carts sell ice cream in packages so it has the carb counts on it. Sometimes that works well.

I don't know how often he tests his BG but expect to do it very often at WDW. Test - Test - Test - it will be the only way to know what is going on. Do not leave his supplies (at least his test kit and low supplies - like fast acting carbs and the glucagon shot) anywhere but on his person while he is on the rides. You don't want him getting in the ride (or the que) and feeling bad/going low without anything to treat it with. It is always possible to get stuck on a ride - and he has supplies you'll all be fine.

In Nov it shouldn't be hot - that will help.

Our son has had it long enough and we pump - so we let him eat like what we'd let him eat if he didn't have type 1. That is really hard to do when your child is first dx'd though - I would sit down with the family and talk about how you're going to handle eating and desserts and so forth. IMHO if your son won't be allowed to eat it then no one should be allowed to eat it. I would look at some of the menus and get ideas of what he would want to eat for meals and desserts and attempt to come up with a plan for giving insulin (not sure what insulins he takes).

I doubt they will let you sub an appetizer but they will usually provide a special dessert. They often will have a sugar free item but those are sometimes made with sugar alcohol sweeteners that can cause severe diarrhea (like malitol and sorbitol). Apartame (equal) and Splenda are usually fine and don't cause that problem. We generally avoid the sugar free stuff like the plague except for sugar free drinks.

I highly suggest looking into putting him on a pump when you are past the shell shock of diagnosis. Pumping allows so much more flexibility and ease. A continuous glucose monitoring system is the single most amazing thing on the planet - check those out as well.

Don't cancel - he will know that you cancelled cause of him. I'd go and set limits on everyone and say this is not a trip for eating - or go prepared with a game plan for the items he thinks he will order looking up some similar carb counts in advance.