In a future post, the range in severity of these disorders will be addressed. Here this range is simply acknowledged. Not all with fatty acid oxidation disorders are ill, at least not every day. Some can seem quite well, in fact. And that is part of the problem
Consider the common cold. For most people it is a miserable inconvenience. No one wants to be around someone with a cold. Who needs the sore throat, the raspy voice, the runny nose? A stomach bug is much the same. For a child with a FAOD, however, the common cold or stomach virus can be the beginning of a health spiral that can lead to coma and death. For these children, anything that leads to vomiting or not eating, as both these common ailments often do, requires that the parents take them to the hospital where they can receive intraveneous nourishment.
Such a visit is not inexpensive and it is hard on the whole family. Other children must be provided for in the parents' absence. Chances are, if the affected child is sick, so are they. And the hospitalized child must get stuck for the IV and for tests. The younger the child, the harder this is for the parents. So, don't get upset if your child, who is still sniffling from last week's cold, isn't invited for an expected playdate. It's nothing personal, but it is complicated.
Family vacations are always difficult as far as the travel itself goes. "Are we there yet?" is a famous refrain. Traveling with a FAOD child means the family must be aware of acceptable hospitals along the way, so that if anything happens, they can get their child the necessary treatment. Selecting a hospital is not simple, either. While some community hospitals are very good, others have no idea how to treat an emergency FAOD patient or even how to assess one. The emergency protocol for a FAOD patient differs significantly from a regular admission. So parents usually map out hospitals known to be FAOD-friendly along with their lists of sights to see, all the while hoping never to have to visit them.
For good measure, toss in the heat of summer or extreme cold during winter vacations and you have another complication. People with a FAOD are usually temperature sensitive and can over-heat or chill quickly, requiring intervention. Vacations can be mindfields for families with a FAOD member. Still, many learn to cope and manage to have fun-filled uneventful holidays.
Living with a FAOD can look, at least to those outside the family, like normal, but just under the surface lies a complicated network of dietary needs and restrictions, complex emergency plans, and mitigation of things such as weather and colds that most people take for granted. If you know someone with a FAOD, trust them to know what is best for their child. It's complicated.
Having a child with a mitochondrial disorder complicates life. Things that should be simple - colds, travel, vacations - are anything but.