This past week, my husbands brother was in town for a visit. We planned one day where we all would go to the Monterey Bay Aquarium, a family favorite. This would be our first all day adventure with Jacob and his new diet. I packed his own bag of goodies: strawberries, gluten free chicken nuggets, safe cookies, and fruit snacks.
We arrived at 11am and after about an hour Jacob told me he was hungry. We took a break and headed to the cafe. I sat with Jacob while Gary and Lili hit the cafe restaurant. As I pulled out his containers of food, I noticed one little boy watching. The first of many questioning stares. Jacob ate all of his berries and 1 nugget. After lunch we headed back into the aquarium. After a few more exhibits, Jacob started to feel sick. I took him to see the flamingos and then he wanted to go home. I sat with him at the entryway while we waited for Gary and Lili. In the 15 minutes that we waited, his stomach became worse and worse and his head was hurting.
We drove home as fast as we could leaving the beautiful Monterey weather behind. Once at home he had a fever for a few hours and then it was gone but the pain remained. His stomach hurt the entire weekend. It's only today that he seems to be feeling somewhat better.
He enjoyed his brief visit to the aquarium but we got a lesson in how EE will intrude into our lives uninvited.
After talking to the doctor, we have switched him back to Flovent and upped his dosage of Prevacid. In a few weeks, we go back. If there is no improvement then another scope will be scheduled, eggs will be eliminated from his diet and we hope for positive results.
In the meantime, I have found an online support group in the Bay Area for parents with children with EE. I also joined APFED and have volunteered to do grant research. At least in that small way I can feel like I'm doing something to help Jacob.