Back from the Beach–lessons learned about travel with T1 kid

Down by the lazy river….

Home at last….ahhhhhhh

All and all our trip to the Bahamas went well but not without a few kinks (fortunately, not the insulin pump tube kind!)

First let me say that our local TSA agents were great (after the initial cranky one who quickly passed us off to her higher-ups).  Our hometown is a friendly one and so were our TSA agents. I explained that KC couldn’t go through the body scanner due to her insulin pump and cgm (not taking any chances with those babies!) and that I didn’t want her to have to take her shoes off.  According to the agents, children under 12 don’t need to take shoes off anyway. In order for us to opt out of the scanner (no wands available at our airport) and proceed to pat down, the supervisor needed to be called .  It was 4:30 am (6 am flight) and the agents were a little gleeful to have to wake up their usually grumpy boss!  We were quickly told that he waived the need for the pat down. All she would need would be an examination of the residue on her hands after touching her pump and checking the residue on her shoes.   They hand checked our insulated bag with insulin and let us through with snacks, juice boxes etc. They all profusely apologized for our wait–to which I repeated “that’s why we got here early!”    One agent thanked me for having done my research and knowing exactly what procedures would be taking place.  I offered my documents (doctor’s letter, Medtronic info, TSA letter) but didn’t need to pull them out of my bag.  The rest of the trip went smoothly as did entry into the Bahamas.

KC’s BG numbers were all over the place–as I expected they would be.  We had agreed in advance that she would go without her CGM from the first morning until the last night.  I really missed having that information available but never more so than at lunch on day two.  After her food arrived, KC pulled out her meter only to discover that her strip container was empty.  We were at a restaurant that was a 20 minute walk from our room….

Time to SWAG!  If we’d had her CGM, she could have bolused off her sensor glucose reading….but no such luck!  So we just covered the carbs and figured we’d fix later.  After lunch, the rest of the family went back to the water park and I hustled to the room to get the strips.

I made a decision give her insulin injections by shot for breakfast and lunch on days we would be at the water park.  I wanted to make sure she got all her bolus doses in ….unplugging the pump means some bolus amounts aren’t given.  She plugged back in at meals and received basal insulin during those times. Worked pretty well.

Our difficult times were at night.  She dropped to 48 at 11 pm–thank goodness we were still up.  With no cgm, we wouldn’t have been alerted and she would have slept through it.  She also ran high some nights….so I didn’t get a whole lot of sleep!  Really wish there was a way to temporarily disconnect the cgm like you can the pump.

She had a great time and that is the most important thing.

Our experience with TSA on our return trip was different, but not bad.  I was directed to let the agent at screening know about the T1…before I could say anything to her, she spotted our water bottle and told me it wasn’t allowed into the gate.  As soon as I mentioned type 1 diabetes, the bottle was put back in our bag. KC got a mild pat down.  I was waiting for my shoes and didn’t have the chance to ask them not to take hers off (she’s 5 ‘7 1/2″  and doesn’t look 12).  This time they just looked at her feet. No residue check on hands or pump.  Also, these agents didn’t open the insulin bag.

Final note: didn’t use the Aquapac but did keep the pump in the Pelican case when KC wasn’t wearing it.

So my advice is:  be prepared, be firm, but be pleasant.  The agents treated us well both at home and in the Bahamas.  Still sad that airline travel has changed so much, but a good attitude and doing your research will make it easier for all!

Beach Bound with a Pumper: what’s a mother to do?

We have the opportunity to go to the Bahamas this summer. Woo Hoo! Awesome, right? Yes it is….until I start to think about the logistics of taking a kid on an insulin pump there. So my brain is in overdrive, trying to plan for every contingency.

DisneyWorld worked out great last year. How can I make this trip just as easy?

Here’s my plan:

-my husband is traveling a day earlier than the rest of our crew so he will be bringing the suitcases
-the kids and I will each have a backpack; mine will be filled with KC’s diabetic supplies

And then:
-have a letter from her endo stating all her meds, pump, cgm and supplies + medical need for juice boxes and snacks while traveling
-pack instruction manuals for pump/cgm to show TSA
-I plan on asking for “wanding” for KC- or at least no x-ray of pump
-contact airline in advance to ask what else we can do to make this easier

Medtronic has great suggestions on their website:  http://www.medtronicdiabetes.com/customer-support/traveling-with-an-insulin-pump-or-device including a travel card to present to the airlines/TSA regarding insulin pumps and CGM’s.

I also printed out information from TSA and the JDRF website

Okay….that just gets us on the plane and hopefully, through customs….

We will be staying at a resort with lots of water activities including a water park,  “river,” and swimming with dolphins.  Yeah….and we are still using a traditional insulin pump.  Not a tubeless patch pump….as KC reminds me daily that she now wants.

I want her to be able to do everything she wants to do on this trip. So I need to figure out ways to accommodate those wants.  We will only have two and 1/2  days at the resort which is a good thing!

She will be needing a site change on the first full day on the island.  I’ve told her she can go cgm-less that day and the next to do her dolphin swimming etc.  Fear of losing CGM in ocean now set aside.

We are used to taking her pump off for swimming, but what to do about walking on the beach?  I dread the thought of sea water and sand + insulin pump.  I spent some time surfing the DOC and discovered a product called an Aquapac.  It is a waterproof case for insulin pumps that has a place for the tube to come out.  It is not recommended for long term immersion/submersion.  Ours has already arrived and KC is excited about trying it in the shower—great to use when she is running high but needs to bathe! **Please note that the manufacturer states that the insulin flow will be slightly restricted due to the watertight seal.  I know I will feel much better about letting her hang out on the beach with this product.  I’ve also bought a Pelican 1060 waterproof hard case to store the pump when she is disconnected.  I can put the Frio cooling case we took to Orlando in the Pelican to help keep the insulin cool.

We are weeks away from this trip….keep us in your prayers as we plan!

I’ll let you know how it goes!

“Should I Stay or Should I Go?” Field trips, freedom and fear

It is amazing what runs through your head when you learn your child has T1DM….most of it is a blur for me now, but I was hit with the fact that KC would be facing an overnight (3 nights in fact) field trip about 8 months after her DX. This trip is considered the highlight of 6th grade; KC and her classmates have been looking forward to it for years! My initial thoughts were 1. of course, I’ll chaperone and 2. ugh, I hate sleeping on those nasty, vinyl-covered mattresses. My brain then let go of that topic and moved on to more pressing problems.

At KC’s 3 month endo appointment, her doctor said she could go on the pump as soon as insurance allowed. She was approved within a week, but we chose to delay her pump start 2 months until the last week of school so she could have time to get used to the change. The overnight field trip loomed in the background—as part of preparing 5th graders for the fall trip, her school arranges a one day trip to the camp in the prior spring. This was KC’s first field trip as a T1 and I went along. I was impressed with the camp staff and with KC’s teachers, who have done this trip so many times. I still dreaded the thought of sleeping on the vinyl mattresses! I knew that KC would have her pump and CGM by the time the overnight rolled around which would provide her with more control of her T1.

As summer went by, we learned more about the pump and how to use it. KC was loving it and I was loving the CGM!

Shortly before school started, we received bad news–my mother was diagnosed with breast cancer. This is her fifth cancer and second type of breast cancer. Her mastectomy was scheduled less than a week before KC’s trip. In addition, my husband had a business trip that could not be moved at the same time as the trip. So I assessed the situation:
1. my mother recovering from surgery and not able to drive
2. my father is no longer allowed to drive
3. husband out of town
4. #1 son cannot be left alone overnight
5. KC’s field trip

I contacted KC’s teachers and told them the situation. “No problem, we can handle KC.” Two of the chaperones were doctors; one of the teachers is KC’s lead member of her in-school T1 management team. I knew what I had to do…I had to let her go without me.

So I did what I could.

Which is organize…and over organize! I created a binder with every instruction needed. I put laminated cards with high/low treatments and contact info on every bag KC took with her. We filled one backpack as the emergency bag: backup pump supplies, sick day supplies, manuals for pump and CGM. I gave her primary chaperone a Novolog flexpen and glucagon pen to carry during the day. Extra Novolog and Lantus were kept in the cabin fridge as was a case of water, two cases of diet soda, string cheese and yogurt. Each chaperone was given glucose tabs to keep with them. KC’s suitcase had each day’s hiking snacks divided into zippered plastic bags–treats for both highs and lows. We also sent a separate meter/test strips with carb counting book to be kept in the dining hall. She ended up taking a suitcase, two backpacks, additional snacks to share, 3 cases of drinks, her Spi-belt, sleeping bag etc. Whew!

Our school has parent chaperones drive for many field trips, so I drove KC and 2 classmates to the camp. I was able to make sure everything was put away where she could find it. I also learned that the cabin had a land-line phone and that ambulance service could be there in 10 minutes. I knew that KC was in the best possible situation for her first overnight without me. After about an hour, I left. Her teachers and I decided that the best thing was not to plan on phone calls unless absolutely necessary. It would be more stressful to be waiting for an expected call that might be late due to a change in the campers’ schedule etc. I had to trust. Now I know not everyone thinks a parent should put that much faith or even burden on someone who isn’t the child’s family….but our school is special. I couldn’t have done this if KC were at a different school—I know because I’ve been in other schools. Our teachers treat us like family—they love our kids as their own. I didn’t have to jump through IEP/IHP 504 hoops when KC was dx’d. The teachers, principal, and staff said “what do you need us to do?” And these are the people I trust her with 8 hours of the day. As much as I worried about the burden of caring for her 24 hours a day, I knew her teachers were not thinking of it as a burden.

So how did it turn out, you may ask? One phone call home on the last morning—her CGM reached it’s 3 day point and she wanted to know if she should change it. I told her just take it off and don’t worry about it. I asked how she’d been. “Great!” was the reply–her only problem occurred the night before when she over-bolused a s’more and she had a low. Fortunately, her best friend (and self-appointed Nurse Assistant Person or NAP) got the teacher and the low was treated.

She was exhausted and hyper at the same time when I saw her that afternoon. Memories had been made! She had 4 days and three nights of being like everyone else…or as close to normal as life gets for a T1.

We uploaded her CGM/pump data and it turns out she had the best BG numbers during that time! Except for the one low, her numbers were perfect the entire time. The emergency bag was never opened; almost all snacks and drinks came back home.

We did it! KC got to be the independent young lady she always has been. Her teachers got to experience living with a T1. And I had to…..let go.

Mickey, Minnie, & a CWD

My biggest fear when planning for the trip to DisneyWorld was that KC would be running high. I figured that the heat, excitement, and lots of walking plus less control of meals would wreak havoc on her blood sugar. Well, the one thing that is consistent about the beast known as T1DM is that it will make a fool out of you time and time again!

KC ran normal with drops toward low every day. I can handle that…give her a juice box and we were good to go! She ate ice cream and french fries–absolute heaven for her!

Then came the nights….she wanted me to sleep with her, so #1 son got the sleeper sofa, J got his own bed, and we girls bunked together. The first night I was awakened by her CGM with a low prediction, checked her BG and she was within normal. Went back to sleep only to be awakened an hour later…rechecked BG, same story. This pattern continued for 4 hours until she finally dropped below 70. I gave her 4 sugar packets, plus the one that ended up all over the sheets…isn’t that comfy! And then she was normal until breakfast. Next night, CGM started alarming every 15 minutes. Took an hour to get her up to normal and then a peaceful night. The third night I gave her a glass of milk before bed with no bolus…and then, thankfully, no lows that night! You gotta do what you gotta do…

Disney with a CWD and Food Allergy

The last time we traveled to Disney World, the kids were 7 and 4.  Some fond memories and some stressful ones!  But lessons were learned that helped prepare us for this trip.  Back then we were only dealing with a food allergy and soon discovered that Disney is the “happiest place on earth” for food allergic children!  And I can report that the parks are even better prepared for food allergies today!  I remembered the chaos of trying to get on the rides we wanted and the headache of dodging strollers and scooters (sorry to those of you who must use both…but not all stroller/scooter patrons appear aware of the roadblocks they create for those of us hoofing it!).

7 years later, we had the additional challenge of dealing with KC’s Type 1 diabetes…our first trip since her diagnosis.  I was determined to make this as easy and stress-free as I possibly could.

First step:  Be Prepared.

I researched the DOC (diabetic on-line community) and found many wonderful resources including Robyn Sturtevant Adams, an authorized Disney travel planner with Travel with the Magic.   http://www.travelwiththemagic.com/ She is married to a Type 1 and also the proud mother of a Type 1 son….and she’s a wealth of information!

So here are some of the things I learned:

Things to Take to Disney

Spibelt–an expandable pump pouch that keeps the pump from jiggling around. (www.spibelt.com)  KC wore her pump on every ride (Okay, she didn’t do Space Mountain  or any of the high thrill rides–but she did ride on the Star Tours ride at Hollywood Studios and the Test Track at Epcot)

insulated back-pack loaded with Epi-pen for #1 son, Novolog and Lantus flex pens, BG meter and testing supplies, extra batteries for pump, juice boxes, glucose tabs, 15 carb snack, string cheese and nuts, water bottles, antiseptic wipes, sharps container, calculator, sunblock, two drawstring backpacks to carry souvenirs, and a first aid kit.

That’s it…one back-pack for 4 people.

How to Manage Our Time at the Parks

Orlando in July is going to be…HOT!  And it was..so in anticipation of the heat and how it could affect KC, we made a game plan in advance of hitting the parks.

1.  Arrive at park opening every morning and leave around 12:30 p.m.

2.  Go back to hotel and swim, or get rest in the air conditioning.

3.  Hit the parks again in the evening until close.

In addition, each family member selected one ride at each park that was a “must do.”  We then used the customized map service on the Disney World website and printed maps.  We were able to look at where we wanted to be and decide what to hit first, second etc.  Using this strategy, we were able to get on most rides with absolutely no waiting in the mornings.  Our only morning wait was 20 minutes for the Jungle Cruise (in the shade the entire time) but we all agree that this was worth it..thanks to our guide Joshua from Lousiana!  He was terrific!

When we came back in the evening, we snagged a Fast Pass then hit other attractions.  All in all, in three days we only used Fast Passes 4 times.

Many people traveling with CWD will try to get a guest assistance pass to help beat the lines.  We decided not to bother the first day and were so successful that we didn’t try to get one at all.

Eating at the Parks

We chose to eat breakfast and most lunches back at the hotel for both economical and health reasons.  But we did have dinner at the Plaza in the Magic Kingdom and lunch at Via Napoli in Epcot.  I made reservations on-line, and brought the printed confirmations with me.  Needn’t have worried, both restaurants were wonderful to us.  The chef at the Plaza came out and asked #1 son what he would like for her to make for him and told him that they had Tofutti available for dessert if he wanted it (he decided to wait until later and get it at the Plaza ice cream parlor).  KC was able to get a kid’s meal portion (easier to count the carbs), plus steamed broccoli and had no-sugar added ice cream for dessert.  Our waitress brought out an entire binder filled with nutrition information for us.

Our lunch at Via Napoli went just as smoothly.  #1 son got his wood-fired, no-cheese pizza and KC was able to have sugar-free strawberry mousse for dessert.  Two happy campers!  Thanks to Davide, the manager, and Michel our waiter!

Next post will talk about how we managed KC’s Type 1….