After talking with many parents and hearing lots of horror stories, I wanted to suggest a way that we, as a group, might better help each other. It is apparent, unfortunately, that there are few doctors in the United States who have experience dealing with MSUD emergency situations.
Most of us travel as families, and, as our children get older, they will travel more often alone. In our case, we put a lot of effort into travel preparation, but things can still go wrong.
Just to give you one quick example: our son, Nikolai, went to visit his brother Thaddeus, who was living in Los Angeles at that time. Since a formula order was about to be processed two weeks before the trip, we asked our pharmacy to ship it directly to the Los Angeles address. Thaddeus confirmed receipt of the formula box, and Nikolai flew to L.A. carrying just one extra day of formula. This prevented his having to deal with heavy formula in baggage or lugging it onto the plane.
Nikolai arrived at his brother's apartment, opened the box and discovered that the wrong product was inside. By the time he called us, it was late in the afternoon here on the east coast and, of course, this had to happen on a Friday.
With just minutes before closing time for the weekend, we made frantic calls to the formula manufacturer, the distributor, the L.A. hospitals, and our doctor. We finally located a nearby L.A. pharmacy where formula could be shipped (they could not ship it to a private address), and our efforts proved successful - but not without incredible strain and pressure on us. It was a near disaster. Nikolai could have been without formula for three days.
It occurred to me during the recent Symposium that if that happened or some other MSUD crisis to a MSUD child or adult anywhere near where we live in western Massachusetts, we would know how to get help for them. We would know where blood could be drawn and spun, how to get overnight or even same day delivery to the nearest equipped hospital, and who could be trusted on a local level to consult with their primary doctor. We also know where the nearest doctor familiar with MSUD is located, and could perhaps lend some emergency formula from our kitchen if it happened to be the same type. In case of emergency, Barbara and I could also assist with advice since we have had more than 26 years of experience with various MSUD problems. I would think we could be of comfort to another family if their child was caught in a crisis situation.
We suggest every family connected with MSUD, who is willing to help other families, make a note of this type of emergency information to keep on hand for easy reference. On the next family address list, or in a separate mailing, all willing families could be identified. The information necessary to make a quick contact with a local family would be included for emergency assistance. Then when an MSUD adult or family travels, and there is a crisis, they would be able to check the family list and locate a nearby contact person.
Although it is important to encourage more doctors to specialize in this field, that will take time. In the meantime, if we can be of support to each other, it could ease some of the stress resulting from traveling away from our primary doctor and hospital.
Please contact Joyce Brubacher (editor) with an updated address, telephone number and e-mail address and indicate that you are willing to be a travel emergency contact family. But make sure you then jot down MSUD emergency information that could be used in your area and keep this handy.
- Eric Rudd
Your clinic may also be able to supply emergency contacts in the area where you plan to travel