Cruisin’ … ♪ ♫

disneycruise

So we did it!!! We survived a Disney cruise with multiple severe food allergies, had a blast, wish we had done it sooner, and plan to do it again! I wanted to be sure and post our experience because if it wasn’t for others sharing their success stories, I wouldn’t have found the courage to attempt it. My two are milk/egg/peanut and milk/egg/tree nut. We took the Disney Dream. The first day was a little bumpy. Our servers thick accent and the fact that he threw in “gluten” when he was reading our allergy sheet had us a little nervous. But he got the head server who read the same sheet and they had it right. The head server explained they take our order and the allergy sheet to the chef to make sure it can be done and then the meals are prepared in a separate area of the galley. It took a little longer the first night to get their meals, but then after dinner we pre-ordered breakfast lunch and dinner for the following day every day thereafter. They had steak and french fries with steamed vegetables, chicken tenders, hotdogs, hamburgers, pasta with olive oil, and for breakfast, they had pancakes, bacon, sausage, prepackaged dry cereals and fruit. We did pack a bag of safe snacks for during the day because it was difficult to find safe snacks on the ship without ordering room service which took a bit longer to go through the allergy process. The days that we were on Castaway Cay, their pre ordered lunch was delivered from the ship to a specified location on the island. The day that we were on Nassau, we chose not to try to find safe food at Atlantis, but just brought safe prepackaged snacks for them to eat because fresh food or unsealed food is not allowed to be brought on or off the island. For those that are severely contact allergic to dairy, I would add a cautionary note that there is unlimited soft serve ice cream on the ship and Castaway Cay and occasionally you would run into a puddle of ice cream or someone breaking the rules with ice cream in the hot tub etc. It was nice to meet a few other allergy families while on the ship and I thought it would be cool if we had a pre-planned get together. Future cruise idea I guess. Also, I did notice they had enjoy life cookies in the kids play area. The epinephrine/medication form you have to fill out to leave it with the staff in the play area mentions it should have the original label which we did not bring, however the staff said we could just write their name on the bag. Castaway Cay has the Epi-pen sign on the health building near the gift shops, FYI, but of course bring your own. I think that’s everything! I hope you too can find the courage to go out and find adventure and not let food allergies hold you back!

My Lightning

baked milk challenge April 2015

When I was pregnant with my son, I worried about the possibility of my second child also having food allergies. My friend had said, “He won’t have allergies too. It would be like lightning striking in the same place twice.”
Well. He did. He has all of his sister’s allergies plus one more.
I recently found out about a doctor near us who provides private practice OIT, or oral immunotherapy. Oral immunotherapy is a process that slowly enables your body to develop a tolerance to an allergen, like allergy shots would for seasonal allergies. We’ve known it’s been around for some years now, but previously only at major research hospitals several states away. We visited this new allergist and left feeling optimistic. He wanted to challenge my son with baked milk and baked egg first, to see if he could tolerate it and then use the baked products for a while to hasten his tolerance to milk and egg, a form of modified OIT, if you will. From what I understand (and I am no expert!), the normal OIT process starts with just a speck of your allergen, say peanut flour, then you (carefully, methodically, and always under the supervision of a skilled physician!) increase the amount every week or two weeks over months, sometimes years. You graduate from peanut flour in liquid, to peanut flour in capsules, to…peanuts! Then you continue to eat your daily “maintenance” peanuts for life to avoid the allergy returning. He would still always have those allergies, and still always need to carry an Epi-pen, but his chance of reaction would be diminished while his freedom would greatly increase.
The day of his baked milk challenge, I was nervous, of course. We got up very early and made the 2 hour drive to the office. I felt good about it, and so did he, but we were all a bit worried that it could end poorly… like with an epinephrine shot and a trip to the hospital. If he was nervous, you wouldn’t have known it. He had two muffins to finish. First a small piece, then a bigger bite, then another. The process went on for about two hours, spacing each about 20-30 minutes apart. I kept trying to watch him without staring at him. Lol. At one point, he bent over to stretch, and I was all, “What’s the matter?! Does your stomach hurt?! Are you ok?!” Turns out he was just bored and stretching. Uneventful. That’s what it was. I’m still amazed. All this time, perhaps, he could have been having things with baked milk in them to help him outgrow his allergy. Of course, things have to baked at a certain temp for a certain duration to change the protein, so we still have to be careful. When I asked him if he was nervous, he said, “At first, but then once I realized it didn’t taste bad, I was fine.” Leave it to my son not to be worried that he has to eat something life-threatening, but that it might be “yucky”!
He is my lightning. He surprises me daily. He is brave, smart, strong, fast, thankful, helpful, and loving. Everything he does is intense… like lightning. 🙂