Killian's very first allergist didn't offer much help. They pricked his back w/ 15 allergens, told us what was positive, wrote a Rx for the Epi Pen Jr., gave me a pamphlet from "FAAN" and said "We'll re-test him in 5 years". Ummmm, ok then! Well a year later the epi pens expired and I called for a refill. They gave me the riot act over the phone. "We can't just GIVE you that!! He needs to be seen by the Doctor before you can do that!" Now you can see why I couldn't wait to switch and finally found a great office about 2 years ago. So that FAAN pamphlet really, really, really helped us! It explained allergies of all levels, which Killian had at the time, and gave me the helpful web address that opened our world up to actually feeding him. www.foodallergy.org YES! The greatest resource I could have. There is a section for recipes, you simply check which foods to avoid (they offer 6 of the top 8) and whichever meal you're looking to make. Dessert, breakfast, lunch, etc. It's SO easy! For me it was, since Killian had 3 major food allergies.
FAAN is also how I stumbled upon the Food Allergy Walk as well as the Food Allergy Support Group I was able to join last year. There are discounts offered for medical ID bracelets, epi pen carriers, allergy free foods. It taught me so much that the Doctor's office lacked in telling us. Just recently FAAN (Food Allergy & Anaphylaxis Network) merged with FAI (Food Allergy Initiative) and is now known as FARE (Food Allergy Research & Education). You may notice our fundraising will now be for FARE, rather than FAAN but it all goes to the same cause as previous years. Thank you for your support!
I'd like to get to my main topic now. I think it's important that I share just how well Killian handles his allergies. I've heard, or even read, about young children not knowing to stay away from certain dishes at relatives home's and the mom just not understanding the struggle with family. Please hear me out, I am in NO way condoning the nonchalant behavior some families show. I just want to point out that children are very capable of understanding, at a very young age. There was a mom with a 3 year old who has the same allergies as Killian. She was furious that her family left a platter (cheese or crackers/chips) where he could reach it and that he "doesn't know he can't eat it". Not to toot our own horn, but Killian was aware well before the age of 3. He has been asking us since he could speak "is it special?". Of course, we still watch him like a hawk but my point is EDUCATE your child. There is no age too early to do this. I kept quiet for this particular mom because I didn't want her to feel like I was attacking or judging her in anyway, it's a very difficult issue to explain to people (food allergies). When you find someone who truly Gets It, you don't want to put them down in anyway about it.
Sadly, I know this from experience, some people don't understand until they see the reaction for themselves. I'm not sure if they don't believe the severity, or maybe they just think allergies are nonsense...? I really don't know. I do know I've had to leave a relative's home because an allergen was served to others. And I do know my son had a very serious (almost needed the epi pen) reaction at a relative's home after a child ate chocolate cake and touched a toy. The cake contained dairy. Since then, we've had no issues whatsoever at the homes. Shortly after Killian's diagnosis my parents so proudly made him his own "special" dish for Sunday dinner. I can still see the huge grins on both their faces - "Mashed potatoes, dairy FREE!" They used his soy milk. Great! I said, and butter? Instant frown. They tried. They really did. That's more than I could ask. Luckily, we bring food with us everywhere we go, as we don't expect anyone to cook special for him. It's too risky anyway, I couldn't help but wonder what the ingredients were if anyone did. I trust my parents and my inlaws. Both provide all packaging to us before serving Killian a bite. I'm quite certain, in our absence, Killian would have them read the list off to him! It amazes me how mature he is for such a young boy. Not because he's ours, he really is that way.
Tony and I are beyond proud of our son and his awareness. We discuss it all the time, especially after school. Killian has informed me that if he feels a friend didn't wash their hands well enough after snack time, he'll ask they do it again. I understand what a nuisance that can be, especially coming from a child. If he didn't have the allergies and someone else did it to him, honestly I'd probably think "what a pain in the @$$, a bossy little thing!". So I get it. I explain to Killian how some may view him and that it's important he explains why he asks them to do so. He gets it. He really gets it. Not just the importance of safe food handling and proper hand washing, but he really gets the bigger picture. The impact HIS issue has on everyone around him. Killian turns 5 next month and he's been his own advocate since he was about a year and a half old. Now that he's getting older and has entered school he's learning he needs to watch out for himself more. Mommy and Daddy aren't 10 feet away watching every move of every person at every moment. I must say - he is doing an incredible job!
No matter what I eat, I keep one hand down on my lap. I don't touch a glass, a napkin, utensil, nothing. This is my free hand if he needs me for anything at all. No matter what's on the table I have a hand 100% free of dairy for him. After eating, Killian asks us if we've washed our hands so we can play or show him something or get him something...whatever it is he's looking to do. HE makes sure we remember to wash up! Like we'd forget! :)
Maybe the fact he's had enough close calls is the reason he really understands it so well? We've had several conversations about death, heaven, that dairy can cause this for him, the importance of noticing symptoms as soon as they occur. Killian's main warning to us that anaphylaxis is near: "I have a frog in my throat." If you ever hear that from him, grab the epi pen and call an ambulance even before you call us! Just seconds later and he can barely speak.
To say he will outgrow this would be a wish at this point. It's much too soon to tell. But I promise, whether he does or not, I will spend my life fighting and raising awareness for a cure. There are enough issues in this world to worry about. Losing a child to a cheeto (in our case) should not be one of them.
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