We are almost at exactly the 2 year mark and a LOT has happened in the last few weeks so this is going to take a while, sorry! :)
Here's the topic list if you want to skip around or look for what interests you...
-Issues at school / resolutions
-OIT graduation - OIT challenge for Walnut
-Food challenge for pecan, food challenge for hazelnut
-On the other side
-Faith and sharing hope
-Issues at school / resolutions
We were notified at the end of April that our Auvi-Qs (epinephrine auto-injectors - lifesaving allergy medication) were expiring so we got a new prescription ($$$$!) and Daniel took them to school. While he was there he dropped two in the office and went to the classroom to put the other two in the "red bag" that should travel from class to class with the kids. The K teacher told him that they haven't been in the red bag all year. ALL YEAR. This was stunning and infuriating and terribly dangerous for a kid with severe allergies, asthma, and in the middle of OIT (although admittedly we did that after school hours in part to keep most of the risks in times where he would be with us). If you have need of epinephrine - to quote my friend from Rock Food Allergies - Trish Gavankar - "Think of epi as your next breath. It can't be farther from you than you can hold your breath". Think about that for a minute. It could be the thing that gives you your next breath if your airway starts to close. Past reactions are not indicators of severity of future reactions. They hadn't had his meds within reach for the entire school year (only two months to go). He does self-carry one (and now we know should have been two) in his spi-belt, but he's five, and he forgets it. We've had many mornings we discovered it after the bus had gone and had to drive it to school or realized in the evening that he hadn't had it all day. It happens and we've worked at it, but that means there were days there was nothing within reach. It's inexcusable and terrifying. The risks are too high and it was clearly documented in his plan signed by the school that those life saving meds were to be with him at all times in the red bag. We know they went on the field trips (the school checked the logs), but so did we! We were his chaperones for every field trip this year.
The other issue is the social aspect - exclusion. He's had a tough time being "different" and not allowed to do certain things: drink out of the water fountain, wash the lunch tables, or sweep the lunchroom floor. He can't eat snack with any kid he wants or eat lunch anywhere he wants. When parents bring in surprise birthday treats, he can't have what everyone else is eating. He has to have something from his "safe snack" box. The teachers aren't allowed to decide what is and is not safe. So he either has to be able to decide on his own or he can't have any food provided by others at school, even if obviously safe for him. This is really hard on him. He has come home crying about other kids having cupcakes and it's heartbreaking. If we had known, we could have sent one (we keep them in the freezer for emergency birthday parties).
So what did we learn from this? The healthplan is a wake county document that is supposed to be comprehensive, but it's not - it doesn't cover missed schoolwork for appointments, exclusions/inclusions or keeping food out of the classroom. Things in hindsight I wish had been in there. It's a best intentions document, signed or not. There is no recourse that our plan was not followed. They have good intent - but the nurse at our school covers five schools. Kids slip through the cracks and it's not safe. Ours was one of them. Thank heaven nothing happened that would have needed an epi injection because the office feels forever far away from the playground and many other places in a big school. We should have continued the pressure for a 504 (a federal agreement) last spring and gotten more things in writing that were enforceable.
What have we done now to fix it? The school admitted in our meeting with the teacher, nurse, and principal that they blew it and his meds are now in the red bag. They reviewed all of their allergy plans to make sure that there wasn't another kid in the same boat. We documented why he was high risk to help show them how dangerous that situation was. We also asked for a 504 meeting at that meeting. (This was prior to all of the food challenges being completed).
What now? Patrick wants to change some of the items in his plan now based on the food challenge and we're trying to sort that out with the nurse. Of course she's covering 5 schools and this is low priority on the list, but it matters to a 5 year old little boy who wants to be like everybody else.
Why the long writeup on the school stuff? Other parents need to know how we fell through the cracks to keep their own kids safe, and to understand why some of us push so vehemently that they NEED a 504 plan when the nurses and staff at the schools will continue to tell you that you don't. Everyone has to decide for themselves what the risk looks like and what they can handle - but it's hard to go into a school for the first time and have a CLUE what to ask for. A 504 plan gives you federal weight, and the office of civil rights (OCR) will intervene on your behalf if the plan is not followed.
Here is a link to the 8 page 2014-2015 "blank" K-2 Wake County Health plan, and the 1 page asthma plan. Please excuse our scribbles, this document isn't posted ANYWHERE, which is really frustrating, so we will be the annoying parents that link it. #notreallysorryatall You can see the options we had to choose from (subject to change but it's better than no idea what to expect). Maybe this will help others to better prepare.
-OIT graduation - OIT challenge for Walnut
May 6th after almost exactly 2 years of walnut OIT we took Patrick to the allergist to eat the thing we've spent his whole life telling him not to eat. :) It sounds funny, but it really did feel like handing our kiddo rat poison and watching him eat it. He was nervous too! I'll clip some items out of facebook so people can get a feel for what that day looked like.
Dose 1 - his "normal" maintenance dose of walnut powder in applesauce 2400mg. Old hat! We've got this!
Dose 2 - 20 grams. That's not a typo. GRAMS. Are you serious? #helikedit #oit #oitlife #mamahasheartburn
We have more nuts to test - but it will be REALLY weird if he can eat walnut freely. This one has put him in the ER multiple times in a bad way. #scienceisamazing
We got cleared for walnut! Holy cow. Needs to eat 2 a day from now on (need to find them in the shell until/if we get cleared for the other nuts). I'm not sure people realize what a life change this will be. TWO YEARS of life revolving in large part around condiment cups of walnut powder and 2 hour rest periods and never being able to miss a dose. THIS. THIS. IS. AMAZING.
So we couldn't go home due to house showings so we wandered around town looking for walnuts in the shell since we couldn't use shelled prior to challenging hazelnut and pecan. Funny how suddenly we spent all afternoon looking for the thing we've spent years avoiding!
It took us a little while to pin it down for what it was, but a few days prior to the walnut challenge, mr chill was having trouble getting to sleep and wouldn't go anywhere without his giraffe. It's not just the parents that struggle sometimes with the anxiety. The morning of the food challenge he kept asking what would happen if he had an "llergic rea-shun". We reassured him that they would give him medicine and keep him safe and he was pretty easy going about it, but if you know him you could tell he was concerned. Big sister was anxious too. She's still pretty young to have had to learn how to inject her brother, what foods to avoid, and when to step in (she's had to tell other adults not to give him food). She's a bit nervous anyway, and this has been hard on her too. She had me in tears one night when he wanted "company" this week and she took her blanket and went and curled up in his twin bed with him. I went in to see what was going on and she told me she'd cuddle him until he fell asleep or for the next 30 minutes. Even at 7, she sees it too. She gets his fear (and ours, which I hate), but I love seeing her show him that she loves him. Brings me to tears every time. It will fade I hope with time, but it's hard to see the shadows of anxiety and real fear in your kids. It's not gone yet, but there is such hope and excitement. Just hate that they learned to have real fear so young.
-Food challenge for pecan, food challenge for hazelnut
May 7th Patrick challenged pecan - it's genetically related to walnut - and after two years of OIT his numbers for pecan IGE had decreased by more than half - we were hoping for a two for one, but knew we had no guarantees. Here are some snippets from that day.
— with Daniel Walton.
Dose 3. This one made me sweat.
Pass!!!!!!!!!!!!!!!!!! Woohoo!!!! Two down and one to go!! Science! I want to do a talk or something on OIT. I cannot believe the progress we've made!
Dose 1 - First time with a hazelnut - here we go again! #helikedit #oit food challenge 3 #gopatrickgo— with Daniel Walton.
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!
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