Parents of Type I diabetics

[kwitcherkicken99]

That would make me so nervous for the levels to drop that low! DBro would get down there on occasion but refused the sugar tabs. It would take my dad hollerin' at him to use them.

 

[bookgirl]

Sometimes when people are first going into Diabetes they have what is called a "honeymoon" period. They are still producing insulin in small amounts or inconsistant amounts, but they will not always have control of thier blood levels.

It might not hurt to watch his diet and maybe log what he eats and how his body language is after certain foods (think glycemic index sorts of stuff). If he's producing some insulin he may be okay with normal balanced diet but certain foods that are high on the index (rice, simple carbs, sugars, etc) might set him off just enough to make his body throw off more urine and crave water. He might even have occasional lethargy.

Hope your endo has some insight and hope your little one is doing well.

 

[GrumpyCAdad]

Yes! I had to change his tubing and give him a "correction" (insulin pump speak).

Last week in the World, his blood sugar was on the low side (40, 57, etc.), but his doctor said that was very normal of type 1 diabetic children who go to Disney World. DS was very excited ... Didn't want to eat too much. I had to bring his blood sugar back up a few times with juice (I carry juice boxes EVERYWHERE).

40?!?! That's really low!!!!

My daughter (7) was diagnosed the day before school started last year. She had all the symptoms as well; constanly thirsty, constant urination...etc...

We went to WDW last November and we watched her very carefully. Luckily, Disney has great sugar free desserts (brownies, no sugar added ice creams...) and she did great all week long, with some whining of course (she's 7, so it's in her nature ) but overall she was fine.

 

[Fantasmic23]

40?!?! That's really low!!!!

My daughter (7) was diagnosed the day before school started last year. She had all the symptoms as well; constanly thirsty, constant urination...etc...

We went to WDW last November and we watched her very carefully. Luckily, Disney has great sugar free desserts (brownies, no sugar added ice creams...) and she did great all week long, with some whining of course (she's 7, so it's in her nature ) but overall she was fine.

I'm happy that your DD did so well at WDW!! Thanks for the heads-up about the sugar-free desserts! I always just pack my own snacks, but this is great information to have. My DS also has a tree nut allergy (and a banana and a sesame allergy). I tell you, when it rains, it pours!

 

[Goofy4Disney!]

And being the mother of a 23 yr old girl that has been diagnosed since age 9, I can tell you it doesn't get any better! The worrying I mean. My daughter is a very brittle diabetic, her sugars are very erratic, but lately have been heading to the low side much too quickly. She can be at 40 and JUST starting to feel shaky. She used to have warning that she was getting low a lot sooner, now it comes on so suddenly she can't even get to help fast enough. Three times just this month I was called by her work notifying me that they had to call an ambulance because her sugar had gone down to 26, 27 and 31. On Wednesday I got the call that her sugar was 31 and they found her on the floor. And in the process of falling to the floor she broke her ankle and is having surgery on Tuesday!! And we're supposed to be going to Disney 8 days later!!???


I'm a nurse and still have a hard time managing her, even with the best doctors (she goes to Joslin) it just seems so hard. And as a mom, the worry never ends.

So tell me we'll have a good time and everything will be fine?? LOL Because I'm so stressed out that's all I want and need to hear! What's Disney like in a wheelchair? It's our 12th trip, but first with a w/c.

 

[kwitcherkicken99]

And being the mother of a 23 yr old girl that has been diagnosed since age 9, I can tell you it doesn't get any better! The worrying I mean. My daughter is a very brittle diabetic, her sugars are very erratic, but lately have been heading to the low side much too quickly. She can be at 40 and JUST starting to feel shaky. She used to have warning that she was getting low a lot sooner, now it comes on so suddenly she can't even get to help fast enough. Three times just this month I was called by her work notifying me that they had to call an ambulance because her sugar had gone down to 26, 27 and 31. On Wednesday I got the call that her sugar was 31 and they found her on the floor. And in the process of falling to the floor she broke her ankle and is having surgery on Tuesday!! And we're supposed to be going to Disney 8 days later!!???


I'm a nurse and still have a hard time managing her, even with the best doctors (she goes to Joslin) it just seems so hard. And as a mom, the worry never ends.

So tell me we'll have a good time and everything will be fine?? LOL Because I'm so stressed out that's all I want and need to hear! What's Disney like in a wheelchair? It's our 12th trip, but first with a w/c.

My heart goes out to you! I can't imagine getting those phone calls - I think I'd lose it.

Reading through your story (that I'm really glad you shared!) here are the positives I thought of:

1. The weather should be nice and cool which will help keep her sugar regulated - no massive heat to quickly spin things out of control.

2. You'll be at Disney!

3. Okay, the broken ankle really sucks, but as a lifetime veteran of foot and ankle problems (I've had over 12 surgeries on my feet - starting at age 6) I can offer this advice, relax! What type of cast is she in? Soft cast? Walking boot? Plaster cast? Using the w/c is going to be your best route to a great trip. I think you can ask for a GAC (guest assitance card). You may want to check out Cheshire Figment and SueMN's signature on the disABILITIES board - they have the BEST info concerning navigating WDW in an alternative matter!

Make sure to allow extra time to get around! I did DL once in a chair - I had it in my head I could handle it on crutches... I made it 100 yards in and knew that just wasn't going to happen so I ended up renting a chair on property. My biggest concern would be any pressure that she'd put on her foot during the thrill rides, so watch that pretty close. You guys are going to be okay while you're down there and a lot of the CMs will get you to where you need to be and are really helpful.

Best of luck to you on your trip, and let us know how everything turned out for you!

 

[SueM in MN]

Using the w/c is going to be your best route to a great trip. I think you can ask for a GAC (guest assitance card). You may want to check out Cheshire Figment and SueMN's signature on the disABILITIES board - they have the BEST info concerning navigating WDW in an alternative matter![/FONT]

Thanks for the pointing out of how to get to the disABILITIES Board.
There is a link in my signature to the disABILITIES Board and to the disABILITIES FAQs thread. If you click on the FAQs one, post #2 of that thread has information about renting wheelchairs and ECVs at WDW. Since she is over 18, you could also consider an ECV (electric mobility vehicle), which would give her more independence. There is contact information for quite a few companies that DIS posters rent from.
You could also rent a wheelchair or ECV at home and bring it with you. Mobility devices are transported free of charge by the airlines and they don't count toward your baggage allowance. If you do that, make sure it's OK with the rental company before you go. The advantage is the price is usually cheaper. The disadvantage is that if somethings goes wrong, you don't have a local company to fix it.

Post #6 of the disABILITIES FAQs thread talks about GACs (Guest Assistance Cards) - you don't need a GAC to use the wheelchair entrance for attractions (most attractions don't have a separate entrance - they use the standard entrance)>

 

[Goofy4Disney!]

Thanks so much to you both. Advice and encouragement and kind words are very much appreciated!! After Tuesday I should know more, I'm wondering if it's even ok for her to fly 8 days after surgery. And can you believe that they scheduled a brittle diabetic's surgery for 2:30 in the afternoon but expect her to have nothing to eat or drink after midnight? Ridiculous. So we have that stress on top of it all. I've already talked to her Endocrinologist and we have a plan underway for the day of surgery. I'm just praying for Tuesday to be over.

I have looked into the stroller rental places and have rented a wheelchair with Apple Scooters. Has anyone heard of them? I've seen them mentioned a couple of times. They will deliver a wheelchair to the POFQ on the 10th (day of arrival) and pick it up the day we leave (17th). Hopefully this works out for us all.

I thought it was going to be stressful taking a two year old on a plane (grandson's first trip!), little did I know I'd have THIS added stress lol

Keeping my fingers crossed all goes well and she's able to fly only 8 days after surgery. I changed our seats on the plane and paid the extra 25.00 each for all six of us to have extra leg room seats. I figure that will give her more room to move her legs around, I worry about blood clots and stuff. Everyone cross fingers with me!

 

[SueM in MN]

I have heard of Apple rental. Not as many people have given feedback for them aa from some of the other rental companies, but those who posted had positive experiences.

 

[Goofy4Disney!]

I have heard of Apple rental. Not as many people have given feedback for them aa from some of the other rental companies, but those who posted had positive experiences.

Thanks Sue. Hopefully it works out!

 

[kwitcherkicken99]

Thanks for the pointing out of how to get to the disABILITIES Board.

What can I say, I have to give credit where credit is due! (That should say YOU GUYS ROCK!)

I thought it was going to be stressful taking a two year old on a plane (grandson's first trip!), little did I know I'd have THIS added stress lol

Keeping my fingers crossed all goes well and she's able to fly only 8 days after surgery. I changed our seats on the plane and paid the extra 25.00 each for all six of us to have extra leg room seats. I figure that will give her more room to move her legs around, I worry about blood clots and stuff. Everyone cross fingers with me!

You should be okay with your DGS! I was honestly surprised how easy it was for us with DS in the parks. We just took things slow and followed the kid's lead and tried not to do too much.

Good call on the extra leg room. I (as well as the multiple surgeries) had a DVT (post-surgical - SURPRISE!) about 8 years ago. Giving her the room to stretch out should help, but make sure she walks the aisles every 20 minutes when she can. That should help ease your mind a little more. Have they talked to you about potential blood thinners afterward? Maybe use baby aspirin or I was told ibuprofen has some thinners in it? Just to give her a little boost without taking her too far?? Just a thought.

Best of luck and I'm praying for you and your family. Extra thoughts your way on Tuesday!