Tia had some tough moments on a recent trip to Montana. Traveling can be hard with PKU. Traveling can be hard with many restricted diets and health concerns out there, but traveling with PKU carries some unique challenges.

Take her formula, for example. Tia drinks a prescription based medical formula 4x a day. Ideally the formula is refrigerated. This formula is everything. She has had it since birth and it gives her 80% of her calories and nutrition every day. She feels more energy and clarity when she has it.

It is also formulated to fill her up for about 40 minutes so that food is less appealing and therefore you have less chance of consuming too much protein and damaging your brain. Brutal, right. A drink, engineered to give you what the rest of us eat in the form of delicious food, and built to fake out your appetite. We are grateful to the companies that make it, but long term, it is tough to eat through a drink all day, every day, for life.

So, when we travel on a plane, we carry-on this formula for that day and the next in case our bags are lost. The rest of the cartons, measured out at 4 per day, the deceivingly heavy little buggers, are packed away in our checked baggage.

On the list of challenges PKU families face when traveling is that TSA requires a full pat down every single time you go through security for carrying this medically required formula. They always ask to open it and we never allow it.

In the grand scheme of life, it is not the worst thing in the world, but I wish TSA could make this process easier for families with special medical needs. Pat downs can be humiliating, they can be borderline offensive, they single you out. Why, because my child has a rare disease?

I don’t want Tia to have to deal with this when she goes to college. I take the pat downs for now so Tia is not exposed to them, but what happens when she is traveling alone?

On to Montana…sometimes it’s easy to let your guard down on the details around PKU, and to head out of the house unprepared. It’s easy to try to fool yourself in to thinking a family with PKU can be spontaneous around meals. You can’t be!

These episodes of no formula on-hand, no pre-cooked low protein food on-hand, entering a restaurant where Tia can eat very little, her metabolism and PHE level out of whack, thus a pounding headache and lethargy, leave the rest of us frustrated for her.

Tia’s anxiety about eating the wrong food and damaging her brain are real too. So what happens? She eats the few allowed bites of her side order of veggies and departs the restaurant hungry.

PKU families have been there. She is inspiringly positive about it, but as her parents, we kick ourselves and I say to myself, “Tia deserves better.”