Search

Bernie and Gabriele Patterson from Alberta, Canada, are the parents of twin boys, Eric and Oliver. Oliver, 9, has a variant form of MSUD. Gabriele, a high school biology teacher, writes about their traveling experiences and gives some tips for comfortable traveling with MSUD . Oliver receives his formula through a G-tube. Read more about Oliver in the article "To G or Not to G, That is the Question" on the back page.

My worry-free travel days were over when Oliver was diagnosed with MSUD. However, while MSUD has changed my life in many undesirable ways, travel was one area I was not willing to give up easily. We take Oliver regularly on 3 to 4 week camping trips - if you can call living in a motor home "camping" - and we have traveled to Cuba, Mexico and Disneyland with Oliver.

Traveling with Oliver is not that difficult, but it is necessary to plan ahead. For long camping vacations, careful planning is essential. I always take more formula than I need and make sure that I have contact names for the major hospitals.

Taking food along for a lenghthy trip is a challenge. We bought a portable two-way freezer. It is not big, but, with creative packing, I can get a lot of pancakes, buns and brownies in it. In order to save space, I have tried to take buns as dough and bake them on the road. It has not been very successful, however, it would get me out of a bind. (I don't think my oven has a good temperature control; I have an older RV.) On the way back from the coast, this freezer is always packed full of fish.

My husband installed solar panels on the roof of the motor home so that we can stay several days in provincial campgrounds, which do not have electricity. They provide power for the microwave and Oliver's pump. The little microwave is handy to warm up the formula and his frozen foods.

Tent camping is a different story. My ultimate goal is to go on a canoe trip again in the Yukon and Alaska. It will be a while before that can happen since Oliver will have to learn to accept his formula without a pump first, and I will have a fun time trying to bake low protein bread daily on a camp stove. Since Oliver's twin is deathly afraid of any aquatic means of transportation, I will have a few year's time to figure this one out.

When traveling out of country, my biggest concern is the quality of water and possible loss of equipment. In Mexico I did not trust the water out of the faucet. I needed plenty of water to clean out the hoses for the pump. The hotel bars were very obliging to supply pitchers and any amount of water needed. I had also taken along an excellent water purifier, and I am thinking of buying one of those filters with microtubules that take out every microbe. When we leave the safety of the resort, we simply do not consume anything dubious - no ice cream, fruit that cannot be peeled, etc. We take the regular precautions everybody should take. Bottled water all the way!

dsc00987.jpg
Oliver swimming with dolphins in Cuba

Our carry-on luggage is always heavier than allowed, because I will not put the formula and pump into a suitcase. When traveling to Cuba and Mexico, I carry a treatment protocol for MSUD, translated into Spanish.

In Mexico, we lucked out and had an all-inclusive hotel with a kitchenette (a time-share unit). We had e-mailed the hotels before making a reservation to see if we could get this arrangement (at no extra cost). We had a fridge/freezer and a microwave available. The drawback was the lack of children's beds when we arrived in the room at 1 a.m. When I complained, they said, "but you have a fridge!" "I cannot put two children to sleep in one fridge, Senior! I need at least one bed! One child can sleep in the fridge because it is broken anyway Senior!" In retrospect, it was quite comical, but at 1 a.m. upon arrival, it was not.

Most resort hotels offer french fries (Oliver thought he had gone to heaven!). We also had very good rice, pastas and buns as well as some suitable cereals. I had Fruit Loops and Coffee Rich with me.

The hotel in Cuba had a little fridge, sufficient for the food I had taken with me. I also carried a letter in Spanish asking to be allowed to store some food in a freezer somewhere. I doubt it would have been a problem. Cuba is a wonderful country to travel in. They adore children and will do absolutely anything to help you. The hotel had its own water purification system, but bottled water was available everywhere. My boys took excursion tours (while I was scuba diving), and again, the tour operators had lots of bottled water on hand. I allowed Oliver to drink a tiny sip of coconut milk fresh out of the nut, but I excused him from anything else that was offered on the farm tour in which he participated. Better to be safe.

Oliver just loves the "all inclusive" hotels. When you look for him, look no further than the aqua-bar, where he will order a Shirley Temple or a Singapore Sling while chatting with the barmaid.

I had actually planned to take him to the Symposium in Danvers, Massachusetts. His immediate questions where: "Do they have a swimming pool?" "Are there palm trees?" "Can I order my drinks?" "No? - I am not going!"

Two years ago we traveled to Disneyland and stayed just outside the Magic Kingdom in a little hotel with a kitchenette. We went to the park early in the morning, regrouped, did homework, had naps in the afternoon, and then went back in the late afternoon. Again, I carried all the buns, etc. in Tupperware in our hand luggage. With Cambrooke pancake mix available, travel is now becoming a little easier.

One thing I learned on my trip to Mexico. Don't put all the remaining formula in your suitcase assuming you don't need it any more. Our luggage was already checked in when they told us that the flight was delayed several hours. We finally took off seven hours late. Even on the way back, it is advisable to have a two days supply of everything on hand.

I don't think that I have written anything new or astounding, but maybe this can serve as an encouragement to others to venture a little further from home.

CHANGE THE LIVES OF MSUD ADULTS AND CHILDREN

The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
Donate Today Learn More

Subscribe to our mailing list

Signup To Our E-Blast Signup with your email address to receive our e-blast newsletter.