We recently spent 5 days at Disney World, our first stay there since Zen's diagnosis.…
I’ve had so much on my mind lately that it was too much of a jumble to really write as the last month has been full of change for us.
What has taken the bulk of my attention is the fact that Zen has been diagnosed with a long list of food and environmental allergies and we had to wait over 2 weeks between the testing until we talked to the allergist about it and I was doing all I could to not go all OCD about it and research the heck out of it all stressing myself out even more.
It saddens me that it took so long to get these answers and that he had to suffer as a result. Most of his symptoms were not typical allergy symptoms so his Pediatrician kept dismissing them until I insisted on an Allergist referral to rule that out as a cause.
We knew that he was allergic to tomatoes which we had been avoiding since he was a year old but there was something else at stake, we didn’t know how bad it was until we watch his back light up like a Christmas tree. Imagine our surprise when we saw how long the list of reactions were. He is allergic to: Soy bean, peanuts, cod, rice, strawberry, grape, tomato, orange, cinnamon. On the environmental front we add dust mites, dog dander, mold, a type of grass and Cypress trees. He has an additional 5 food allergies that are mild enough to not require elimination.
It is overwhelming to think about but I remind myself that it could be worse and I am thankful that it’s not.
We are making progress, while there is some more testing to be done because he tested negative to a food that we know he reacts to, I feel a lot better about things (or maybe I have just recovered from the shock). We are adapting.
So now we have added “Allergies” to the list of reasons why we homeschool. If Zen went to school the doctor would have had to submit paperwork for an allergen free classroom and we would have had the stress of ensuring that the school followed up on it, he was relieved to discover that he would be at home and encouraged us to keep him there. He also has several environmental allergies will also be better controlled at home.
Our extensive collection of stuffed animals had to be put away. I couldn’t bear to part with them completely as most of them are linked to fond memories. I now need to ask family to please not give any stuffed animals as gifts.
I now look at the daily allergy forecast the same way other people look at the weather forecast. A benefit of this is that it is helping me with my own environmental allergies.
Zen is handling it surprisingly well, despite some of his favorite foods being off limits he doesn’t complains because he likes feeling healthy. At 3 years old he is being incredibly mature about this but there is still learning to be done. He is allergy to 9 different foods so he hasn’t memorized all of them yet. He still doesn’t automatically refuse when people offer him food or remember to ask if peanut/soy/rice, etc, etc are on it.
His older brother is becoming very good at policing that and although he also hasn’t memorized all 9 allergens, he knows most of them and knows that Soy is in a lot of foods so he always ask “does that have soy in it?” before allowing his brother to have it.
Still for my peace of mind I plan to get him a medical alert bracelet. Because I notice other parents and kids sharing food when we go to the park and while I plan to be there to advocate for him, I’d rather they didn’t offer in the first place. His allergies weren’t deemed severe enough by the specialist for him to prescribe an Epipen so I want to play it extra safe just in case.
There are a variety of bracelets to choose from. Due to his multiple allergies the customizable charm ones were the best option in theory but they have a maximum 6 charm capacity and he has to avoid 9 types of foods. So instead I have ordered a generic “I have allergies” bracelet until I can order a customized “Do not feed me” one.
I also get to print “Chef Cards” and will have to request Allergy Menus at restaurants, some types of restaurants won’t really be an option for us anymore.
We have follow up testing in a couple of days and I hope that we will get a prescription for an Epipen when we see the allergist after that. I hope that we never have to use it but it would give me peace of mind to have.
Last year we participated in FARE’s Teal Pumpkin Project for Halloween. This year, my child will be one that will benefit from people participating in that project.