Tuesday, May 19, 2015

Freedom!!!

May 19, 2015

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
-Kid anxiety
-Food challenge for pecan, food challenge for hazelnut
-On the other side
-Faith and sharing hope
-Thanks

-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.
https://drive.google.com/folderview?id=0B4rsfLOOF00XLXotYXp0R0lOb2M&usp=sharing

-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


Dose 3 - at least 20 grams.  What's the big deal mom and dad? Can I have some more pudding to dip them in?


Dipping mini-poisons in pudding.  So crazy! Dose 4 was BIG!


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!

-Kid anxiety
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.

Dose 1- first bite - pondering the taste of pecan for the first time.  ‪#‎oit‬ ‪#‎oitlife‬
 — with Daniel Walton.

Day 2 - Pecan- Slower today since he's never had this one before - tiny!


Dose 3. This one made me sweat.




Dose 4 - HUGE! He didn't eat all of this one.
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! 


This is about the time that offers started coming in on the house - it's a bit of a blur as we were clearly focused on other things :)  He got his first ice cream in a normal ice cream shop on Thursday afternoon.  :)  (The only other time was at Disneyworld where they have exceptional allergy handling programs).  He was thrilled for the first 5 minutes and then was too busy playing to eat most of it.  He only had to avoid a Nutella topping and could choose from every flavor they had!  It took more time to choose a flavor than to eat it!  We also made a walnut apple dapple cake for him this week, he had it for breakfast a few times.  Erin spent 30 minutes with me one night shelling walnuts so we could fix it.  We're all going to get fat if he keeps passing these challenges and trying new desserts!


Patrick approved this cake!
Dose 1 - First time with a hazelnut - here we go again!  ‪#‎helikedit‬ ‪#‎oit‬ food challenge 3 ‪#‎gopatrickgo‬
 — with Daniel Walton.

Dose 2 is done (2 hazelnuts)! (no picture)

Dose 3 - good but too much chewing!  ‪#‎oit‬
 — with Daniel Walton.


Dose four! Nutella baby! He still likes it smile emoticon
 (and he's high on sugar now!)

He passed!!!!!
Thank you thank you thank you to all of you that worried, prayed, read labels and helped keep him safe and us sane! I want to yell Freedom like in Braveheart but with a happier ending!  smile emoticon

From Dad:
Patrick passed his hazelnut challenge smile emoticon A big thank you from Alli Renner Walton and I to all of the friends and family that read labels and avoided tee nuts for Patrick for the last 4 1/2 years!!
From Mom: 
I can't echo this enough. thank you all for helping keep him safe and helping keep us sane. This two year journey of OIT was so worth it!!

I cried in the car before I could go home from the allergist that day.  That evening we took the kids to La Farm Bakery for the first time, and then to mellow mushroom for pizza.  And we didn't ask what was in anything or give out cards or talk about cross contamination.  It was very very strange.


Freedom with tree nuts tastes like Nutella and macaroons and honey walnut cream cheese!
 — with Daniel Walton at La Farm Bakery.

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

Tuesday, March 3, 2015

asthma, school safety, and getting it

March 3, 2015
1 year, 283 days
2400mg walnut protein powder / daily

Sorry it's been a while - maintenance has thankfully been pretty "normal", but that doesn't mine life doesn't throw curveballs at you!

End of November/December - we had our first wheezing incident in over 18 months - we took the little guy into the peds office/urgent care and the oxygen levels were not where they should have been.  We were surprised as the preventative asthma medication (QVAR) had been rock solid up to this point.  Asthma does what it will...  We got him sorted out and medicated appropriately and back to normal, and changed asthma meds to Dulera.  So far so good (and it's been several months of winter which is our tough time).  Dulera seems to work for him, but holy moly it is up there in the expensive prescriptions we have filled category.  2 puffs 2 times a day means that the inhaler lasts 30 days only, and the "insured" price is $258 per inhaler.  Ouch.  Well the new drugs are always the most expensive - gotta pay for the awesome scientists/researchers/trial organizers!  We got optimistic and filled out some forms with the manufacturer for coupons (which was tedious!).   When we filled the script with a coupon, turns out there is an "age range".  If you're not between 12 and 60 you're not eligible.  Well that would have been nice to know before I jumped through all your paperwork hoops (twice!) for a free script and a discount card that he can't use.  Oh well, sometimes you just have to laugh.  He's not wheezing.  And he's still taking 2400mg of walnut a day :)

The only time he worries me with his doses is when is got a cold, virus, etc... Sometimes his face will get flushed and stay that way for an hour or so, then gradually fade.  It's happened during our checkup appointments twice so the allergist has seen it too.  It's never been anything more alarming, but you will sure as heck put down your laptop and stare at your kiddo for 4 hours once you see that happen.  I'm still amazed to watch this little trooper cheerfully eat something that could kill him every single day without a word of complaint.  Now granted, he did not understand this process when we started (he's a young 5)... I'm still not sure he really gets it.  He almost never asks about his doses.  But he also may not remember ever NOT doing them.  He is blissfully unafraid.  Which is great, b/c I've got enough for the both of us!  The doses are no longer the scary thing, but the way he interacts with the world and having to depend on the unknown "other" adults to keep him safe is tough.

Flushed cheeks at allergist dosing in Jan


The worst days - he broke down at breakfast the other day and asked why he's always the ONLY kid in the class that can't have the special treats brought in by other families.   This was a shock as we haven't been notified of special treats in ages... I didn't know he was being left out :(  We will talk to his teacher and see what is going on, we may leave some ice cream for him in the school freezer - I think that might cheer him up.   Worse than feeling sorry for him though is this: there are at least two other kids in the class with peanut and or tree nut allergies.  Are they seriously allowed to eat food brought in my someone other than their own parent or without having it cleared?  Do they not have the allergy plan in place?  (which pretty much defaults to only food from your home in the early grades?)  If I find out about something at school (cookies for valentine's day) - I sent in three small packs of Enjoy Life cookies for the allergy kids (and replied to the whole class parent email so the other parents could give permission).  I really hope they aren't taking risks with their sons and daughters.  The last day of school before christmas was another scary one.  The class was doing a food project (we have a deal where we take turns going in to "help" and to keep him safe for food parties/big projects).  We had sent in safe ice cream cones and assorted candies to decorate the "christmas trees".  Daniel went in to help and poured a mix of safe candies into a bowl for P and took it to his table.  Daniel told the other kids (not knowing that was the nut allergy table) that P was allergic to tree nuts and couldn't share candy bowls.  The other kids piped up that they too were allergic...  Daniel was horrified that no one had told him.  Worse, almost all of the rest of the class candy had already been mixed together and handed out.  So the three kids at P's table had one safe bowl and whatever could be scrounged that hadn't been mixed into the giant class bowl.  I'm glad Daniel was there to keep them safe, but man it would be nice if we could do more things that were not based around food, candy, sugar, ugh.... The head nurse for WCPSS has said they want to phase out food rewards and junk in the classrooms, but I sure don't see that at the individual school level.
There are lots of best days too - finding out he could eat bread at a local irish restaurant, neighbors that read every label for him, friends that text us labels before making food to share with our family.  There are too many to count and remember, and we have to be forever grateful that the good outweigh the bad.  Love wins!

On a different note about WCPSS - we got transferred as a bunch of schools have shifted their base areas to accommodate two new schools.  That has caused it's own mayhem (including a lot of time sorting out options, talking to student assignment (facepalm!), and sometimes looking at houses on the web.  We still don't know for sure yet what school/calendar/track we'll be on but hopefully soon.

Last topic... getting it.
I'm trying to be a better community advocate this year.  I continue to see old standby "safe" products turn unsafe (M&Ms - sigh), or major brands consolidating their production lines to the point that we can't buy staple items in some places b/c of the nut warnings on the labels (Trader Joe's is AWFUL about this, Publix has cross-contamination warnings on 6 foot tall signs in their new cary store, Harris Teeter store branded stuff tends to be unsafe).  So this year I've started writing letters to everyone that might listen.  The bad first:
Trader Joes - I'm not sure they actually even read the letter - the reply I got seemed like they thought I was complaining about a mislabelled product.  The email I sent them was saying please stop moving all your staple foods to shared lines with nuts, b/c I can't shop anymore at your store without need to go to another store afterwards to fill in all the holes.  Chicken stock, pancake mix, cereal bars, etc....
The in between:
Mars candies - M&Ms - while the response was very carefully worded, I think they did understand - they said they would take the concerns to marketing and manufacturing.  I had politely told them to enter this new world and realize allergies are only increasing - it's time to segregate your facilities  - until that time you are now banned from our house and many many nut free schools.
The awesome:
Papa spuds - our veggie/meat delivery service - I ordered a recipe kit recently with brussels sprouts, radishes and grapes.  When my produce box arrive I was unpacking it and the kit fell out - and had a bag of pecans in it.  I gave it away, cleaned the box - washed down anything it might have touched, and emailed the team at papa spuds.  They got it.  REALLY.  They get the risks, the scare of not knowing that it was in ingredient in a kit, and the CC problems that can cause.  They promised to make SURE that any kits they package will be clearly labeled on the website with the nuts that they contain (without having to click down into extended details of things).  I've always loved these guys, I love them even more for doing what is in their power to help.  Raleigh Cary Apex peeps - these are good people.  If you want to try veggie delivery use my name and we all get some free credits! (I think) :)  I'd love to show them a little love for being a company that listens.

As always - thanks to you all - I continued to be humbled by the friends and coworkers with no allergies in their lives that read this and learn what they can about this "club" and how to help keep its members safe.  May you never have to join it, but keep your friends safe!

Much love,
Alli Walton



Thursday, November 6, 2014

Kindy, trackout, green bees, and sight words

Nov 6, 2014
1 year and 166 days
2400mg (maintenance dose)

We've made it through the first quarter and the first track outs.  Everyone has stayed safe, we've built a rapport with the teacher, and been on one field trip.

I may fall over now.  :)  It's amazing the time, emails, effort, and prayers that went into those two simple little sentences.  We've been through a lot.  Getting the allergy plan in place was a lot of wrecked nerves, gentle pushes, and repeated conversations.  We've been blessed with a teacher that gets it and emails us to ask about brought in snacks (unexpected).  There've been some ups and downs.  A parent said they were bringing in a birthday treat but would never respond what it was going to be.  So... do you send a safe cupcake and hope they didn't bring fruit?  We guessed right and sent a cupcake, but your kid is either just fine, or the envy of the class, or the only one without a sweet treat.  I would prefer better than 1 in 3 odds of doing it right ;)  I would prefer everyone stop bringing in food, but it was made clear to me they wouldn't restrict what came into the room by the nurse and the assistant principal.   I am grateful to his wonderful teacher that tries to keep us all updated.  I know there are three allergy kiddos in his class.  One is us (tree nut), one is peanut, and I'm not sure on the other one yet.   But we make absolutely sure never to send any peanut products at all.  I know he's usually seated with the other two kids (that's how we figured out who they were).

Track out camps were a bit nerve wracking but we made it!  Camp 1 we emailed with details about his first two reactions and said absolutely no food sharing at all, and no outside food that wasn't a piece of fruit.  They agreed immediately and went into a crazy level of detail with forms that I had to fax to the allergist and medication agreements.  I saw their schedule later (accidentally tucked into his papers that came home one day), and was AMAZED to see the # of kids that had allergies and what they were.  But they had low ratios of kids to adults, he loved it, and they had clearly made sure every teacher for every segment of the day knew which kids had what allergies.   And they did it quietly, gently.  I may be in love with this camp.  They teach them musical instruments, art, play outside, and all sorts of other fun stuff.  Can I get to go here?  It was nice to find a place we can trust on the first try!  (We knew other allergy parents that had gone there and were very happy so we had some inside info).

Week two we took a vacation to the house of mouse (Disney) and had some great food experiences and some not so great.  Never anything that put us at risk, but Disney is famous for accommodating allergies and at least twice I didn't feel that was really the case.  But for a whole week of eating out that's pretty amazing. :)  We will email the special diets program and let them know about the good and the bad, but we had a blast.  We had our first ice cream parlor experience (that went over quite well!), and another time got frozen apple juice and safe cinnamon buns.  Lots of research and stalking of boards on facebook (Disney Chefs Rock Food Allergies is the primary one I used).  Tons of good info and nuggets that only matter to the food allergy community, but that can really make the trip a lot more fun and inclusive.

Week three both kiddos were at a sports camp - their policies were so ... laid back it was stunning compared to camp 1.  We talked to the coaches at length and they had all been trained on epinephrine and apparently deal with this pretty regularly.  I did figure out after day one they thought he was also allergic to peanuts and he more or less ate lunch by himself.  I asked them not to do that, but asked that he sit with his sister with other kids.  I don't know if he chose that on day one or if they did.  He didn't seem to be upset about it so we didn't make a big deal about it, but I did tell them to be careful not to exclude him.  That word seemed to make it click.  He loved it and was totally worn out at the end of each day.  He got a stomach bug the end of the week which wasn't so fun.  I'll be careful with these guys but they clearly train their coaches, so it was good.   Active stuff is great :)

Stomach bug was not so fun.  Poor little man is a trooper though.  I finally had to him in to get something for the nausea so we didn't mess up our OIT.  They took one look at mr totally limp and pathetic (he didn't MOVE for the whole appointment) and gave him chewable zofran tablets.  As soon as we got his stomach to stop heaving he recovered quickly and was able to keep down his doses.  By day 2 he was asking for guacamole, so I figured he was improving fast.  We avoided dairy for a few days and all was well.

Halloween went off well - we dumped (we thought!) all the unsafe candy before they came in and sent it back out.  We also participated in the Teal Pumpkin Project and had toys and non-food items in a separate bowl available.  The kids liked painting the pumpkin teal and REALLY liked picking out items for that bowl at the store.   One scare was the morning after Halloween, the kids were up before we were and discussed eating candy without us and decided that was a bad idea.  I praised them later for that, especially when I realized the candy they wanted to eat was from a goody bag (and hadn't been screened yet!)  I said several prayers when I read the labels and found TWO items that would have appeared safe (smartie type monster shaped candies) that said processed on a line with walnuts. When I got my heart rate back under control, we had a long talk about why they did the right thing, and showed them the label, then promptly trashed the candy.  Hooray for them doing the smart choice!

Aside from the OIT (which he doesn't really understand yet), his world revolves around play, sight words, getting green behavior bumblebees at school, trading in said bees for prizes, and beginning math.   I swear we were learning colors in K?  But he's making it.  Couldn't be more proud of this tough little fellow.  Honestly I might be even more proud of his big sister for understanding far better than he does the risks that he faces.  She's a bit of a nervous nellie, but she loves him fiercely and watches out for him. When she's not busy torturing him or telling him how to do everything of course!

Thanks to all the friends, neighbors, family, and allergy peeps that have cheered and prayed for us on this road.  It's long and slow and fraught with nerves, but it's been great to be loved along the way.  Onward!  Maybe one day we'll get into that clinical trial and speed up this process.  I can dream anyway.

Free book! - Nov 6 and 7 - free kindle kids book  about food allergies.

Fierce Monster and Max from "Where the Wild Things Are"

Alli


Friday, June 20, 2014

school days are almost here!

June 20, 2014
1 year! (and 27 days!)

It's been a long slow process but it's neat to look back and realize we've been at OIT (oral immunotherapy) a full year with no reactions.  That's pretty amazing!  The little man is doing fine and excited that school is about a month away.  Crazy.

The allergy planning at school is complete!  Hooray!!! There are papers, on file, signed, in the office.  It took a lot of emails, a lot of patience, and several face to face meetings, but it's done.  The main points (see previous post):

  • Subs are trained on epinephrine, but only at their initial hiring.  This is frustrating, but it's better than never.
  • The bus drivers will be trained (as a group), by the nurse before school starts
  • We will have at least 4 epinephrine devices (for us that's the Auvi-Q Jr) at school.  The "red bag" that follows him class to class (1 or 2), in the office(2), and …)
  • He will be allowed to wear his spibelt with an Auvi-Q(1)!  (for those in the allergy community this means he can self-carry, and was a BIG concern for us).  This one is HUGE.
  • After much discussion, he can have his epi on the bus, and it doesn't have to go into his backpack.  He can continue to wear it in his spibelt under his shirt.  

This now covers the concerns about the bus, the bus driver, most of the concerns about substitute teachers, access to epinephrine by a bunch of 5 year olds (if it's in his backpack), and transit to preschool aftercare.  Patience and determination (and honestly just asking calm questions!) really paid off.  The allergist was not going to help us push for an epi on him (to cover the bus or red bag missing scenario), but we feel much better that we got this in his plan and he will have access to his meds on the bus/all the time.  May he never ever need them!


I am sure he will be looked after at school.  But it's really hard to leave a nut free day care and put him in a community setting where we will never meet some of the folks that take care of him.  We have done everything we can to make sure that his meds are within easy reach and that he knows what to do.  The nurse will make sure the staff knows what to do.  I have no doubt he will be loved at school, he is in an awesome place where he loves with abandon, with his whole body, his whole heart.  He hugs his teachers goodbye every day, he lights up when he sees us, he runs to us when we get to preschool and jumps into our arms.  He has an infectious smile, a belly laugh, is surprisingly insightful and observant.  Kids… they are amazing.  He also has a wicked smart big sister to chase after and learn from.  She will do anything to keep him safe (and maybe torture him a little in the background).  They are worth every tantrum, every fear, ever sadness over their hurts.  It's a big step to turn them loose.  We will have to do it in ever increasing stages.  He's ready.

Not sure mom is :)


Wednesday, May 14, 2014

Topping out on walnut for a while...

May 14, 2014
Day 355 (Almost a year!)

Well we hit the top dose today!  Woohoo!  2400mg of walnut flour.  We'll stay at this dose for a year.  I asked the allergist why it wasn't higher, and apparently this is the walnut protein equivalent of several nuts.  That was a shock, I had no idea it wasn't a one for one weight calculation.  (I thought we were still at less than one nut).  Everything seemed fine, we saw the somewhat normal redness right under his eyes, but no symptoms.  That didn't last long (also normal for him).  So we'll go in once a month now for a dose in office/monitoring/catch up.  After that year we will have his IgE levels retested and see if they've dropped enough to move on to the next nut.

That was a bit unexpected, but we've been so busy talking about school readiness that we missed that we were so close to this milestone :)

On that note - we've met with the elementary school nurse and assistant principal to discuss how we keep our little guy safe starting in two months (yikes!)  WCPSS (Wake County) has an allergy plan and an asthma plan that looks a bit like a choose your own adventure book (where you choose how you want them to handle certain situations like the lunch table and outside food).  Some of the choices were really non choices, and feel a little exclusive, but I get how a standard is much easier to implement.  (For instance he has to be able to either make his own food choices exclusive of an adult's input, or he can only eat food brought from home with no exceptions).  That's not a choice - he can't read labels, doesn't know all the places nuts can hide, and he's really too young to say no to all the tempting possibilities that will come up at school.  So only home food - always.  The bad part about that is the social exclusion from every party, event, candy handout, etc… for the whole year.  We're going to try to be the room parents so that we can offer to buy safe food/snacks for parties, but things will come up. We can have ice cream or things like frozen cupcakes stored at school and a snack box for the teacher to use in case of those surprise events, but he'll be different every time unless we bring in the food for the class.  So far he hasn't quite realized that he's going to be that kid.  It's time to start talking about it though, he has to get that he can't cheat the odds and take a bite of something.  We'd really prefer never to have to visit the ER again with him struggling to breathe.  At least all of the permanent staff and bus drivers are trained to use epinephrine. (yay!)  It also sounds like he can have an epi in room with him that will follow him around the school (they call this the red bag and in lower grades it follows the class everywhere - diabetes meds, epis, inhalers only).

The biggest points of contention so far (and they didn't really feel like an argument just things we have to sort out) are the school bus (does he self-carry on the bus and where is it kept), and what happens if there is a substitute (they are not epi-trained, anaphylaxis trained).  The bus I think we can sort out with them (and with the after care at the preschool).  They are willing for him to have it on him and that's a big deal.   Everyone likes to say the kids aren't allowed to eat on the bus.  Well, that's irrelevant since we are all well aware that they DO eat on the bus.  Some of them are on the bus for over an hour, we get it.  But we need for there to be an epi available.  Who knows what might be smeared on a seat where he puts his hands, or if he might give in and take a bite of something tempting?  The school wants it in his backpack front pocket, but that's too accessible to everyone IMHO.  We want it on his body (in a spi-belt).  That's what he's been wearing for months (with a trainer epinephrine injector with no needle).  It's under his shirt, small, and harder for another kid to get their hands on it.  The substitute issue is interesting.  For his Kindy year it's probably moot (there is an aide assigned to the class full time too, and the chance of them both being out is very low).  This is something the schools need to figure out.  Subs are not "normal" school employees, there are over 1000 in this county, and they are not epi trained (at least not unless you get lucky).  Leaving him in a class with a sub who doesn't know how to recognize or treat anaphylaxis at this age is not an option we're ok with.  The school didn't really have a good answer but said they'd look into it.   If they can't figure out something we may be picking him up if we find out they have a sub (and we may be asking for it in writing that they call us if his teacher and aide are both out).  We're willing to train a sub, but they aren't sure it will be allowed.  Ah the frustrations of HIPPA/FERPA, government policies, and ill thought out scenarios.

Other big news - for the time being we got denied for the trial at Stanford we were hoping to get into - but we're in their system and are watching (ok maybe stalking a little) as they continue to grow that research into Xolair and mass desensitizations.  Very very interesting stuff!

We did an allergy friendly easter egg hunt this year (no food) and the eldest kiddo at first was not happy until she realized that she was going to get a bunch of little toys instead of candy.  :)  That went well - and it was good to meet some other parents who know what it's like to have to stalk your kiddo at an egg hunt where there might be suspect candy.  We also met another little fellow at the allergist today doing peanut desensitization that I'm sure we'll be seeing every month since we're on the same schedule.

Any friends / fellow parents out there who are looking into this stuff, check out NC FACES on facebook or ping me and I'll get you on the group.  It is awesome to have a place to talk about this part of our world (when Enjoy Life Foods go on sale on zulily or amazon, what baseball games are nut free, how to navigate the local school system, 504 plans, etc…)

Thanks for listening - this one is getting long so I'll stop here and do another update soon!  We are so lucky to have friends and family that help us on this road.  Thank you all, you are blessings to all of us!
Alli

Thursday, March 20, 2014

Warning… science incoming!

March 20, 2014
Day 300
Dose 1500mg/day

300.  Sounds like it should be a milestone doesn't it?  It is!  We increased the dose yesterday to 1500mg and got some puffy eyes to show for it, but it faded a little at a time and no other symptoms cropped up.  The nurse and I kept a serious watch on him in the hours following the dose, but he's ok.  Nothing like a little mom anxiety to put your workday in perspective!   We also discovered this week that Chipotle uses no nuts in ANYTHING.  Boy that was kind of fun - told the kids to order anything they want on the menu with no reservations!  Very allergy friendly menu for most folks (not for soy, wheat).

So there's your minor update on our oral immunotherapy… now for the science geek out and hopeful research updates:

I've referred several times to the Stanford trials of OIT with multiple food allergens and specifically to the shortened OIT in combination with Xolair.  This supposedly is opening up to 4 other places in the US (although I can't officially find out where, I would imagine Arkansas Childrens, Hopkins, and UNC to be three of them… )   If we could desensitize more folks in far less time (and to up to 5 allergens at once), well wow.  It's frustrating as the news articles hint at things that you can't find on the Stanford or any other university websites, but I know it's all in progress research.  We would be thrilled if the trials were expanded into NC.  Heck we'd consider temporary relocation if we thought we could get into them even in California.  

Stanford blog post about allergy research (talks about the phase 2 Blinded study potential openings and potential future DNA tests that might show if OIT maintenance can be discontinued safely.  (It appears that for peanut allergy that is "cured" there are DNA changes - wow a safety screen test?!)

Presentation by Dr. Burks (formerly Duke, now UNC) on the state of food allergy research 12/18/2013.  This covers lots of the ongoing research for OIT, SLIT (sublingual immunotherapy), the Chinese herbal treatments (FAHF-2), Xolair (omalizumab) combined with OIT for milk allergy and for peanut, baked egg and baked milk trials, 

Blog post about FAHF-2 in combination with OIT (instead of Xolair) - this a great update about not only FAHF-2, but Stanford and Mt. Sinai research collaboration.

Perhaps I should consider a new career - I'm turning into a different kind of geek.  If anyone is as excited as I am about such things, send me a message and I'll show you lots of places to watch for updates.  Or maybe order a shirt from thinkgeek:




Until we meet again...
Alli