Traveling for the First time… with PKU

JUST BREATH. All is going to be fine. You are going to travel for the first time with your baby with PKU. I promise you can do it! You are strong and brave and with what you’ve been through you can handle anything!

This year we traveled to Chicago for Thanksgiving with most of my husbands Family. This was Frankie’s official first time flying. She was eight months old at the time. We were a little terrified to say the least. So I started trying to find information online about traveling with a baby specifically with Formula and Medication. There was one article, which didn’t help me much at all.

I’m writing this blog to help other Parents traveling for the first time to put them at ease. It’s okay. You can do it! It’s not nearly as scary as I thought it was going to be.

It’s shocking how nice people can be when not only, you are nice, but also stay calm and explain your situation.

So first with Frankie’s PKU I went onto TSA’s website to look up all information about traveling with formula and medication. Now on the TSA website they did disclose to bring any necessary information you need to identify what you are carrying. So we had UCLA print a letter telling them we are traveling with KUVAN, and PERIFLEX which is her Medicated Formula. TSA NEVER ASKED TO SEE IT. Also we brought a copy of Frankie’s Birth Certificate. I do recommend having it with you just to have it, but no one ever asked to check that either. So don’t bring it out unless they ask for it.

I think that perhaps they might ask for International flights so I would recommend having the letter prepared if you are going through customs but don’t worry if you are staying in your country.

So this is how it goes. Bring your car seat and base. I bought a bag online for them that worked as a backpack.  Airlines don’t charge to check a car seat so don’t worry. You can check it at the curb or at the gate. I recommend checking it at the curb when you get there. Just one less thing to carry.

We brought our carseat, base, packed in a special backpack to check in right away as just mentioned. We each brought a suitcase to check. Mike packed his own bag and I shared a bag with Frankie. We brought one carry on, and her diaper bag. Then the Stroller, with Frankie sitting comfortably inside.

If you need more than that, well you aren’t gonna have any hands so I wish you the best of luck but I can assure you, you can do this.

In a carry on suitcase I packed her Periflex, her Kuvan, Enfomile, baby food, cereal puffs, and her PKU Gel packs. I also put in a change of clothes for her, a blanket, and a few extra diapers, and a package of wet wipes. Just in case our luggage got lost we would have everything crucial we need for her.

We brought bottles that already had the prepared POWDER formula but didn’t add water in  because we wanted to make sure it was fresh for her. So just buy a water bottle when you get through security. However we did prepare two bottles for her. When you get to security you have to take your kiddo out of the stroller to walk through and then they will pat your child down lightly.

Then they will take your suitcase and diaper bag to the side and swipe to check everything, put it through their screener and thats it. NO PROBLEM!

I promise you. I know how terrifying it is to travel with liquids these days. They make it really easy on you. So don’t worry! You are amazing!

Don’t overpack either. You can buy more diapers and wet wipes wherever you are going if you need them. Also don’t bring ten thousand toys for you baby on the plane. They will not have any interest. Maybe bring one or two.

The Flight Attendants were awesome. They let my husband or myself stand in the back of the plane with Frankie if she got upset.

We also bought Baby Ear Muffs for her to silence the noise at takeoff. I do recommend that because it is pretty scary at first so silencing the noise is good.

SO just be prepared that your baby will probably get upset at some point during the flight but I promise it will be okay. Most passengers these days have earphones in their ears the entire flight. They can’t hear your baby. They are invested in their movie or music.

If you do encounter a grumpy passenger just laugh and say, “well we were all babies once!”I know how lame that sounds but whatever. They can go eat a bag of rocks. You are traveling with a baby! They should be cheering you on. So don’t worry about “Grumpy Pants” just take care of your family.

If you need any other traveling for first time with your baby with dietary needs please message me. Good luck! And HAPPY TRAVELS!


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