There are over 50 OIT family blogs published in our “Research & Learn“ library. They contain the journey of that family in OIT–some are in clinical trials, and others are in private practice with board-certified allergists. All the blogs are fascinating to read, full of wisdom and knowledge unique to that family’s journey.
ONE EXCERPT FROM THE BLOG:
My post into an allergy parent forum on facebook with other OIT parents. We truly thought we were going to be in this (OIT) for another four years and suddenly we have found unexpected freedom. There have been a lot of tears (the good kind) as we’ve realized that he’s already got the protection we have been praying for and thought was years ahead of us. So those of you thinking about OIT… here’s your happy ending. We’re still a little scared and have a lot of adjusting to do, (still carrying epi and still have asthma), but we took that trip to the bakery and let them pick anything they wanted. The request was of course that it have one of those three nuts in it – and we found a hazlenut chocolate cake for them to try. It was amazing. And the joy on his face (and his protective big sister’s!) was worth every drive, worry, updose, and fear we’ve had. I feel like someone lifted the world off our shoulders yesterday. He threw away his extra maintenance doses this morning with the biggest smile. We will maintain eating our OIT nut to make sure we keep our desensitization, but it looks like our allergy journey is ending! Thank you all for the support you’ve given – we will still hang out and pray we don’t find a new allergen, but right now we are in the giddy shocked stages of trying a “new” restricted food every day!
I still kind of want to get him that shirt that says “because science b*&^#@!”, but some of those while hysterically funny are terribly kid inappropriate. 🙂 Alas, they can read!
-On the other side
I have to say I’m truly not sure I have ever had so many joyful tears. People keep telling us congratulations, and of course we say thank you it’s truly amazing and our own modern day little miracle, and half the time realize a few minutes later they were talking about the house! LOL. It’s ok, the rest of the world doesn’t have to understand. We get it and that’s enough, and we are boundlessly grateful. So many small things every day have been reasons to smile instead of stress. The trip to the grocery store where Erin insisted we needed raisin, date and walnut oatmeal because he’d never had it before (and fixed it for him the next morning for breakfast as a surprise!) Walking around the grocery store is shocking, instead of seeing everything that we can’t buy, I see a zillion things we CAN buy – all of which he’s never had before. Some of them are admittedly junk, but it’s fun to walk around the grocery store in this giddy state that you can have whatever you want! I remember swearing as a kid that I’d eat an entire pound of my mom’s fudge when I was old enough to choose for myself. Now that sounds like a terrible idea! But the grocery store is just a tiny example of the million stresses we’ve had for years that are now reasons to smile. And seeing the joy that the kids feel and the elated grins from tasty new creations or small freedoms are so worth all that stress. OIT was not an easy journey, and we are extraordinarily lucky to be done in two years, lucky to have a doc in our hometown that will do OIT, lucky that we could do private practice because we’d never have been accepted into a trial or would have been kicked out due to asthma concerns, lucky to already have the protection of desensitization while he’s still only 5 years old. Blessed.
We have a long ways to go to figure out what life looks like on the other side, you don’t undo all your precautions overnight! We are still carrying the epinephrine and probably will continue to do so (it’s also a great emergency treatment for asthma in a pinch!) I keep thinking the euphoria will lessen, and it has, but it comes back with just as much zeal as that first day. One day at a time. Patrick is ecstatic about potentially having new freedoms at school, but process has to catch up with progress, and so far no real changes have happened. We wrote a note to allow him some of his most requested changes – drinking from the water fountain, freedom to sit with anyone at snack and freedom to sit anywhere at lunch. Now we wait for the nurse to approve or change his health plan (which must be maddening for a 5 year old!), but he knows he’s safe, and his teacher knows, and for me that’s enough. There isn’t that much time left in this year, but he wants so much to be like everyone else and to do those silly things that they all get to do (like wipe the tables in the cafe!) That might not sound exciting to us, but when you’ve always been the only one who couldn’t do it, those little freedoms are important. That’s the part the school system seems to be missing in large part – there are social implications to being different / and times he was mindlessly excluded to follow a rule that didn’t fit a situation. Don’t get me wrong – I love his teacher and she clearly loves him, and that matters MOST. She was not going to put him in a risky situation. But it’s brutal to see your child come home crying again and again over the little things, but they aren’t little to him. This is his whole world.
-Faith and sharing hope
So why are you shouting from the mountain-tops?
I feel like we’ve been given a gift. A gift of a life with freedom in it instead of constant stress and labels and health plans, a gift of protection, of science. I know a lot of folks don’t have this faith, but I feel like God gives us choices and lets us choose to do work to make our lives better. We were given opportunities to try new and scary treatment options, and we put in that work and took those risks. Don’t we owe it to him and to those who might also benefit to tell whomever will listen that they could protect their child, friend, spouse, neighbor too? We don’t yet understand why the incidence of allergy has exploded. But we have more options than ever before to attempt to protect the people that we love. It takes a lot of prayer and love from the people around us to get through this stuff. We need our community – our community of faith and our community of family, and our community of extended family (friends), and our allergy community. So often we share only our sorrows and bad moments, this is a chance to say there is hope in the world, hope to protect people that you love, hope in new science. It is not perfect, but it’s created by humans. We’ll never have it 100% right. But we will continue to try, and to take risks, to give ourselves and others that hope. We were not expecting this now, I’m not sure we really believed we’d ever have this kind of freedom. So this mom is going to do something un-natural for me – I’m going to tell everyone that will listen. Two people contacted me today about interviews, for a blog and for a national parents forum on kids with allergies. I plan to say yes. Maybe this is why we were given this gift. To give others hope. So forgive us for yelling our joy until we’re blue in the face, but this is the real job. If we give someone else faith and hope, then it’s worth every second of my personal discomfort at being the center of attention. The science is improving. There is hope, even for the severely allergic, the kids that would never make it through a trial (in hindsight that’s us too!). So thank you for the gift, we plan to use it well!
-Thanks
There is not enough paper to name all the people that have kept our family safe over these years. The friends and family that sacrificed traditions and easy things to make things from scratch, try new things, read a million labels, texted photos of recipes and labels, cleaned counters, grilled servers and chefs, delivered allergy lectures, put up signs, warned other friends, followed the kids around at parties, left home tasty items that weren’t safe for us, learned how to inject epinephine, and generally avoided lots of otherwise yummy things when we would be around. Thank you for helping us through our anxiety, for listening to our fears, for the many hugs, for “weading da wabels”, and for loving us enough to learn about a very scary problem that we couldn’t manage alone. It takes a huge village to do this – especially if things are outside of “normal”. (Who is normal really anyway!?)
I’ll leave it at that. Thank you could never be enough, but it’s all we have to offer. THANK YOU.
Mom/Alli, Dad/Daniel, Patrick, and Erin
