Glycogen Storage Disease – StarchWars

Florida Trip Tips and Tricks (try saying that 10 times fast)

Posted on 01. Jun, 2007 by Jillian in Be Prepared, GSD Resources, Glycogen Storage Disease, Glycogen Storage Disease Type 1A

We just got back from seeing Dr. Weinstein at Shand’s Hospital/ Univerisity of Florida in Gainesville. Last year just getting there was extremely difficult. Anything that could go wrong, did. This year was incredibly smoother, mostly due to the extra set of hands AKA Aunt Bonnie (we will NEVER be able to thank her enough) but I will attempt to offer friendly advice to anyone else traveling with GSD kido-s that is willing to learn from others’ mistakes.
1. BRING HELP!!!! This may not be necessary, only helpful, if you only have one GSD kid, but it is beyond imperitive to have as close to a one on one ratio of adults to GSD kids as possible. Since we were on three different feeding schedules, with four “special needs” children it was well worth the extra plane ticket to have someone able to help with cornstarch and child “wrangling”. It was essential on the airplanes, but much more helpful than I thought it would be while in the hospital. We were able to leave the boys with someone they knew either in the playroom or their hospital room while we could speak with Dr. Weinstein without kid interruptions. We learned and accomplished so much more this year without distractions-and excessive fatigue. It also helps if the designated “helper” isn’t afraid of flying, but nobody’s perfect.
2. Bring necessary medical equipment (including a physician’s note) as a carry-on. For GSD1a kids this usually entails cornstarch (premeasured) for at least as long as it will take you to get to your destination plus an additional 24 hour supply. You never know when a flight can be delayed- I speak from experience. Also, a feeding pump plus bag and tube may or may not be necessary, however I prefer to be prepared in case of motion sickness. Obviously you would also need water, syringes (if the child has a g-tube). Glucose tabs or pixie stix (however your physician instructed you to treat hypoglycemia) in case of low blood sugar in addition to the trusty glucometer with plenty of extra strips. I love anti-bacterial handgel, but medical gloves are even better. Obviously GSD friendly snacks are also important. Pack everything else as lightly as possible. It’s amazing how much the “essentials” weigh. Most importantly bring a note from your physician. Premeasured powdered substances tend to raise a few eyebrows in airports. They will also prohibit you from bringing water if it is not medically necessary and you will most likely need to bring more carry-ons than you usually would.

3. Call ahead and request transportation. This was us last year: Two parents literally running through the Atlanta airport carrying an infant in a carseat with a blanket propping up his bottle, wearing backpacks and lugging more luggage than technically “allowed” simultaneously dragging two young children wearing small monkey backpacks/leashes while mixing up cornstarch and trying to suck it all up with a syringe because we’re 10 min. past due. Barely making the tram and praying the next flight is also delayed- or at least knows we’re coming.

This was us this year: Serenely (well, as serene as anyone can be with four kids after flying across the U.S.) driving in a bus on the tarmac, waiting for a B57 to pass before we continue our 5 min. drive to the next gate that took us 20 min. to run to last year. Arriving with a few minutes to spare before the next cornstarch dose was due. Aaaah. The peace.

In another airport they just transported us on a little go-cart to the next gate. Nice, but not as exciting as the little bus.

When you make your airline reservations, ASK FOR TRANSPORT!!!!

4. Reserve your hotel and rental car ahead of time and don’t be ashamed to ask for a medical/hospital stay discount. Try to ask someone who has stayed at a hotel in the area for a reference. Never go off pictures online-again disaster from last year, but at least I got my money back. We really liked the Hampton Inn in Gainesville. It was a bit older but so are most of the hotels in Gainesville. It has been remodeled though and while it isn’t the best looking Hampton I’ve ever stayed in they went out of their way to accomadate us. Everything from a room at almost half price because we were visiting Shand’s Hospital, to making GSD friendly eggs for the complimentary breakfast. The attendant even asked how many days we would be staying so she wouls be sure we would not have a wait for the eggs next time. There is also a pool- albeit right off the freeway. The best part of the hotel, however, would be the beds. Very nice.

I hope these few tips help. If you have any of your own please share!