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

More hope for OIT in less time?

3/10/2014
Day 290 - Current dose is 1200mg.

For those of us stalking the Stanford studies, there have been some really awesome articles in the news about their progress in the last few weeks.

Let me back up and explain a few things.  OIT == Oral Immunotherapy, essentially you orally ingest your known allergen (food) on a daily basis and very slowly up the dose in an allergist's office.  (So you increase the dose maybe every two weeks).  The Duke/UNC DEVIL study (peanut) is an example of this.  Some allergists will do OIT as an in office therapy, although it is currently not covered by insurance.  It's a breath of hope for those of us with multiple allergens to worry over.  Stanford's SAFAR team has been doing OIT for up to 5 allergens at a time and is pretty much the only place in the country where you can do this simultaneously right now.  When it could take years to desensitize for a single allergen at a time, this is both scary and really hope granting research.  The median time to reach maintenance doses was still long (85 weeks).

Their latest publication talks about using an anti-asthma drug (Xolair) to decrease the amount of time needed to reach maintenance doses.  They were able to do multiple allergens in the new study and reached maintenance levels at a median of 18 WEEKS!  I know it's the first stage, but man… sign us up!!!  Looks like Phase 2 trials began in February.

Articles:
Science Daily
Allergy, Asthma, and Clinical Immunology Journal

So that was the exciting bit - but in other good news - Allergy Eats (app for helping rate/rank restaurants for ability to accommodate food allergies safely), has posted their list of top ranked allergy friendly chain restaurants.  I wasn't going to paste the text but we have a pretty good selection of these in our area so here you go.  We have tended to feel safer at smaller pubs and places we can get to know the staff and owners, but this is handy.

Large (over 200 units):

• Red Robin Gourmet Burgers (4.45 rating)
• P.F. Chang’s China Bistro (4.43 rating)
• Chipotle Mexican Grill (4.41 rating)
• Outback Steakhouse (4.35 rating)
• Romano’s Macaroni Grill (4.20 rating)

Medium (50-200 units):

• Bonefish Grill (4.43 rating)
• Ninety Nine Restaurants (4.28 rating)
• Mellow Mushroom (4.26 rating)
• Uno Chicago Grill (4.24 rating)
• Bertucci’s Brick Oven Restaurant (4.17 rating)

Small (under 50 units):

• Burtons Grill (4.90 rating)
• Maggiano’s Little Italy (4.73 rating)
• Papa Razzi (4.68 rating)
• Legal Sea Foods (4.67 rating)
• Not Your Average Joe’s (4.66 rating)

Until next time…

Alli

Adventures in snow and allergies

Feb 19, 2014
Day 271

Adventures in allergies....

We've had a good run the last few weeks - no issues to speak of and we've gone up to 900 and today 1200mg of Walnut powder.  One of our buddies (thanks LK!) took a walnut half into their work lab to weigh it so we'd have a better idea of what we are "eating" vs a whole...  The one she weighed was 2.85 grams for a half. (But that's what most folks would call 1 walnut).  So he's up to over 1/3. :)  That's pretty amazing.  Now I still have no idea what would happen with a pecan or hazelnut, and don't intend to find out anytime soon!  But that's great progress...  "Life" insurance - right? We figured this is a 6 year adventure we're on, and we're not even at a year yet.

Our snow adventures were interesting.  The allergist ran low on the walnut powder again two weeks ago.  So the monday before the snowstorm (last week), they didn't have it yet.  Tuesday they had it but closed early b/c of the bad weather coming in (which didn't hit but I don't blame them for closing).  They've changed suppliers for their walnut powder, so maybe this will stop happening now?  I hope so, it causes a LOT of parental stress!  Wed morning they had planned to be closed but we called and caught them there and Daniel zipped over there to get the doses.  Then the 2" in 2 hours hit.  While everybody was trying to get home.  Daniel got stuck in the crazy traffic but thankfully was almost home when all the streets turned into parking lots.  He stopped at the local bank and walked the last bit home with the meds.  You do what you have to do, but on some level you have to laugh.  He came in covered in snow (much to my amusement).  Then thursday the preventative asthma inhaler ran dry and I had to venture to the drugstore (but could easily have walked it).  Why there is no counter on the QVAR inhaler I have no idea, but I'm going to email them.  We also set up an automatic refill on it and they will notify us when it's ready so that won't happen again.

The new walnut powder is coarser than the old, but we kept a very close eye on him for the first dose, and nothing seemed amiss.  He's been on that for the last week or so and it's going fine.

Cool stuff - Epinephrine and school stocking info - this is a pretty darn good article about epinephrine in general, why it's important, and legislation across the US to make it available for the 25% of emergencies that are unknown/new reactions in schools.  Right now depends on where you live if a school nurse or staffer could give your kid an epi shot without a prescribed dose for your child.  Kids have died because these laws weren't clear and epi was available (another child's Rx) and wasn't used.  Stock epi solves that problem.  (unprescribed epinephrine available in schools).  With the increase in allergies, this stuff should be in public places, just like heart defibrillators.  It is the ONLY thing that can stop an anaphylactic allergic reaction.  Now that we're about to enter public schools I'm seeing just how scary the lack of clear policies can be.  NC needs to catch up to the rest of the US and get some clear laws in place to allow stock epinephrine and to protect those that have to administer it.

Fun snow stuff - we finally got the kids skiing this weekend (in NC) - shockingly the conditions were awesome.  We've created two little ski monsters though!  We had no troubles with allergy stuff with ski school, but we had to be creative on how to keep epis in the temp range while skiing.  (inside backpacks under jackets for instance).  It all worked out.

Stay safe friends!

big kid school, free epi training, and allergy cards

Feb 4, 2014
Day 256

Allergies have been high in our minds the last few weeks - we've moved up to 600mg of walnut powder for the daily dose. Tomorrow we go to 700mg at the allergist. It takes a lot of time, but he's thankfully a very agreeable kiddo.  He gets a bag to take whatever toys he wants... and sometimes he entertains everyone with his costumes and antics. This was 2 weeks ago - my little protector!  I hope he stays this agreeable for the years we have of this in our futures!

The superbowl (and of course party with lots of food) - was a great success, and in no small part to the friends (our local family!) that helped make sure he was safe and that everyone knew not to give him food without a parent okaying it.  Our host/hostess sent us this photo of the "baked goods" end of the table before we even GOT to the party.  :)  We also had him wearing allergy alert stickers so that those folks that don't know him would know not to feed him.

In other news, we just signed him to start kindergarden in July where he will join his big sister at the local Elementary school.  EEK.  We are barely starting those conversations with the school, eventually the school nurse, the teacher (we don't know who yet), and the allergist.   It's a LOT of paperwork, planning, and thinking through what makes sense, how to approach people, and how to most importantly keep him safe.  We don't want to induce some crazy burden on the school, but we don't want them to ever need to inject him with an epi.  Heck, I don't want to ever have to inject him!  (again)
This is amazingly stressful to think about leaving the "nut-free" preschool world and having to depend on others (some of whom we will never know), to keep him safe, at an age where he can't quite protect himself (or read the labels).  We have been researching on the parents of kids with food allergy forums (you need to register), went to a 504 plan webinar (you can watch the video), and talking to teachers, other parents, and anyone with any experience in this area.  The allergist was surprisingly negative about a 504 plan (he said a health plan is fine).  Given what we've researched, we don't agree, but we will talk it out with patience and come in with humility to talk to the school.  It's not a demand list, it's supposed to be a discussion to decide how we can all keep him safe, and a document that details what we agree upon.  We have a health plan in place for our eldest, but her life is not in immediate danger if it's not followed.  We will plod slowly down this path and take lots of notes...  And I will try not to shake every time I talk to anyone at the school about leaving him there without his army of protectors.  Gotta let go sometime...

Other cool stuff...
-FREE (used to be a paid training!) Epinephrine/anaphylaxis training online.  This is pretty awesome.  If you have friends with food allergies, take the 20-30 min and do this.  You may have to save them one day, you need to understand what to do and when to do it.  And THANK YOU epi-kit for making it free!
1. Go to http://www.EpiPenTraining.com and click Sign Up.
2. Fill in the Registration Form and agree to the Terms & Conditions.
3. Click Sign Me Up. 
4. A box will appear confirming that your account was created and that you're logged in.
5. Click Continue.
6. Click Begin or Continue Your Training Course.
7. Click Start.

-Allergy cards for restaurants - we dug all over the place and these things are EXPENSIVE and you get two or three laminated cards that you need to remember to get back from the server each time.  We used vistaprint (just picked a business card template), and printed 200 for about $20.  We put his picture on it, and wrote it as a request from him to help keep him safe (people are more careful when they know it's a child that can't protect themselves).  Don't spend your $ on the fancy "allergy" cards.  You can print EXACTLY what you want and get far more of them online from anyplace that makes create your own business cards.  We put emergency info on the back including please don't hesitate to Epi if you see symptoms.  So far it's been VERY well received.  We decided to do this after reading the restaurant blog (see last post).

Much love to you all - it's sometimes a very carefully planned out world we have to live in, but we do it with the support of all of you!
Alli, Daniel, E and P

Questions, hickory nuts, good food

October 16, 2013
Day 145

We're up to 175mg!  Crazy to look at the little cups of powder and think that we used to barely be able to see it.  Slow but steady.

Patrick is asking more and more questions - why can't he have bread on his burger at West Park Tavern?  (They get their bread from an outside bakery that makes nut breads too).  What kind of nuts do they use mommy?  Is it in the bread?  Cross contamination is a hard concept for a little one to understand, but we're slowly getting through to him.  Why can't I have the cookie mommy?  (they have nuts in them buddy).  We're trading ice creams for cookies, etc... and he's asking more and more often the why, what, how, explain it to me questions.  (And to my mom - I get it now, I must have driven you insane in elementary school, I know I was that kid!)  He's also questioning friends (adults) that have brought food into the house for dinner - which is great!  He asked about a doughnut this week that he was given for dessert.   Maybe the baked goods problem is finally sinking in?  I can hope...

We're making steady use of the Allergy Eats app on my phone and reading reviews of restaurants and posting them ourselves.  You can't ever make assumptions or be afraid to say clearly that you have an allergy.  Recent comment that made me shake my head... "Well since you said he's severely allergic I checked the bread and he probably shouldn't have that."  (What if I hadn't said severely!?)  Daniel has taken to saying deathly allergic, which feels a bit dramatic but certainly gets their attention!  People also don't always seem to get the difference between a tree nut and a peanut.  They seem to get it better if you just say he's allergic to NUTS.  While that's not entirely true, who cares in the restaurant if it keeps him safe? :)

Places we've loved for their awareness/kindness this month:
West Park Tavern in Cary, NC.  The owner (when he's there) is fantastic and always comes by to sanity check the food ingredients with us.  He's also been awesome about substituting desserts for the kids that are safe (when he's there they never charge us).  Lots of healthy food options (including veggie sides for the kids).  The waitstaff are hit or miss on what they know about allergies, but they've clearly been trained to go talk to the head chef if anyone mentions an allergy.
JD's Tavern in Apex, NC.  Besides that the bartenders here and staff are just plain FUN and the food is good, these guys are very careful about the kid's food whenever we go here.  The kids like to play outside on the patio and the meat/fruit options for the kids are good.  No one bats an eye at mention of food allergies and they always ask if there is anything they aren't sure of.  Someone has done a good job training their staff!
Elevation Burger in Raleigh (Brier Creek) - the cashier deferred immediately to the manager, who was very cautious and had the same concerns we did with the bread (which we didn't eat).  He also came out to check on us when our food came out and to make sure P wasn't too upset about the lack of bread. (I ordered mine without bread too.)

Scary moment: When we were in the mountains with friends and the kids were playing in the driveway, Patrick brought me a handful of cracked open nuts.  My heart stopped for a moment as they looked familiar (similar to walnuts and pecans in the shell and the meat looked similar).  My friend confirmed they were hickory nuts, which are in the same botanical family as walnuts and pecans.  Not a nut you run into often, and it wasn't offered on the bloodwork panel when we had all the nuts tested (they didn't have it).  We had the kids throw away all the nuts and scrubbed everybody with soap all the way up their arms and asked them not to pick up any more nuts other than acorns.  The good news is that there was no reaction from touching them (or the oils).  The allergist says that this does not mean he wouldn't react to touching a walnut or pecan.  (We'd have to test and no one wants to do that!) :)

Thanks to all the friends who have helped us keep sanity - not just with allergens.  We couldn't do this stuff without you guys.  Our communities (of friends!) matter more than they know.

research notes - what's with all the allergies? 504 suggestions for tree nuts

108th day
Sep 9, 2013

It's been a heavy research week for me - talked to lots of folks about 504 plans and such.  Everything has been calm, although we had to switch to dinnertime dosages so that we have 2 uninterrupted hours to keep an eye on Patrick.  On workdays we don't always have 2 hours of blocked time with him, so we are now keeping doses in the car (in case we go out to dinner or are running REALLY late), and trying to adjust our schedules.

Things of interest:
Discovery Channel documentary on the epidemic of food allergies in America - you can view this online which is awesome.  They have some good stories (and some very scary ones), and talk about OIT therapy at about the 40 minute mark (which is what we are doing with walnuts right now)

State laws for allergies/asthma by state - NC summary and links to the actual legislation

North Carolina law, Section 115C-375.2 (2005), requires local boards of education to adopt policies authorizing students with asthma or anaphylactic reactions to possess and self-administer asthma medication on school property, at school-sponsored events, and in transit to and from school.  These district policies must include certain provisions: 

• written authorization from the student’s parent or guardian permitting the self-administration of medication
• a written statement from the student’s health practitioner verifying the student’s health condition and prescription of medication
• a written treatment plan for emergency protocol provided by the student’s health practitioner
• back-up asthma medication to be kept on file in the school in the event of an emergency

Some salient points about the NC law and why I care:
-We are at greater risk because asthmatic kids are more prone to anaphylactic reactions
-We can let P self-carry his epinephrine injectors - this is unclear in all the Wake County school documents and varies widely by school.  But if we have to fight for it, we have the tools now.
-If a teacher forgets to move his injector around the school with him, he can always have one on him.  They might not have minutes to run and get it.  And if it's not on hand, they are less likely to use it as fast as they should.
-He can carry to/from school, for sports, and field trips.
-schools have to have school wide policies in place for asthma and anaphylaxis (we need both so this is positive and means the staff are more likely to be trained)
-They don't stock unprescribed epinephrine (yet) - but the bill S.B. 700/H.B. 824 is still pending. 

I'm sure it won't be a walk in the park, but having help navigating the minefield of rules has been fantastic.

504 notes - I talked to a GREAT lady from the POFAK (parents of food allergic kids) forums who helped me to start a list of accommodation requests that seem reasonable for a 504 plan.  Having a tree nut allergy but NOT peanuts changes the list pretty dramatically.  The risks aren't quite as great for us.  (He might not NEED to sit at a nut free table).  I won't send him to school with peanut butter (but he can eat it at home).  Erin doesn't get PB anymore either, there is one boy in her class with a severe peanut allergy.  Sunbutter works just fine, but we have to watch packaged foods.  (Kashi cereal bars, squeeze applesauce, annie's cheddar bunnies, and seed trail mix packs from peanut free planet are all favorites.  We try to pack our own foods but sometimes you're in a pinch!).

The current idea list - modifying as we talk to more folks and figure out what makes sense:

1. All staff who may supervise kiddo must be epi-trained and able to recognize a reaction.  (this should include bus driver, teacher, aides, lunch, specials staff)

2. Kiddo will self-carry epi-pens in a waist pack.  A backup kit with epi-pens, Benadryl, and rescue inhaler will be in the classroom with the teacher or with the nurse. (2 reasons to have the kid only carry epi: so epi is the only choice available and to eliminate risk of another kiddo getting a hold of the liquid/chewable meds).  If he isn't ready to self-carry, word this for teacher to carry and hand off to specials, lunch, etc.  Remove self-administer - he's too young, and honestly most folks having an allergic reaction feel so bad and can be so out of it that they aren't capable of doing it during a reaction.  We can't count on that, adults should be in charge if that is needed)

3. Staff will supervise handwashing (soap, not hand sanitizer) of each student after snack and lunch time.

4. Staff will sanitize tables and chairs after daily snacks with sanitizing wipes. Anything with actual TN ingredients is not served in the classroom as a group food.

5. Classroom will be food free except for the following: daily snack, birthday parties (kiddo's parents must be notified 3 days in advance), Winter and Valentine's parties.  (We might need to be the room parents, have parents send in money for the parties and then we do all the shopping.  This makes sure everything is safe.)

6. Substitutes that are not trained to use epinephrine: Kiddo will be placed in epi-trained teacher's classroom for the day or epi-trained para/TA will remain with the substitute teacher for the day.

7. Regular substitutes will be epi-trained. (i.e., the ones who do a lot of subbing for the school or who will be there for a long-term sub assignment)

8. Lessons that include food or allergy trigger must use safe brands.  Kiddo's parents shall be given a minimum of one week's notice to research and give approval.  If no safe option or accommodation can be made, the lesson will be replaced.

9. Kiddo will have a treat box kept in the classroom for use as needed.  (Covers when mom forgets to pack a snack, random PTA "surprise" food reward, candy handed out by specials teachers, etc.)

10. Food allergy bullying will not be tolerated.  Any bullying will be handled according to district policy.

11. "No shared mouth instruments, parents will provide a dedicated one as needed". (if they use kazoos, music instruments) - higher risk for peanut allergic kids more than ours.

12. Empty food cartons/cans being reused.  Often teachers will "clean" a nut can to hold group supplies or will stock a housekeeping center with empty real food containers.  Discard any unsafe containers of common allergens (nut jars, trail mix containers)

13. pencil pouch/box for his supplies.  Knowing how often little kids touch faces, stick fingers in their mouths, etc., we felt better keeping kiddo's supplies just for him.  

Notes for approaching teachers: "I know you don't want to have to epi my kiddo and this is one way to reduce the risk/make your job a bit easier" helps a lot.  Most don't want to have to be "the one" who messed up or who had to epi.

lunch arrangements.  Our school has a "nut free table".  Patrick eats PB&J just fine, he probably doesn't need to be isolated.  (Although I wouldn't send PB - I'd use sunbutter or wowbutter, etc...)  He's not airborne allergic to his nuts, it should work for him to sit with his class.  Suggested - sit at the end of the table and the kids next to and across from him can't have obvious TNs. 

Thanks to all the other moms and dads for the recommendations/assist on the idea list - keep them coming!  We will keep a running list until the summer and then sort it out with the school, allergist, etc...

100 days of mostly non-events

Sep 4, 2013
Day 100

It's been a while, but here's your status check on not so little Patrick.  2 weeks ago he was supposed to go up to 125mg, but he was fighting an infection (unrelated) and had a nasty cough and cold.  So we went to see the allergist as usual but they decided the safe course was to lower his dose for 2 weeks.  So we went back down to 75mg for 2 weeks.  Have to remind ourselves it's not a race, and that being safe is more important than doing this quickly.


Today is day 100!  And appropriately, we've gone back up to 100mg.

All is well, we're juggling lots of appointments (nothing new), and Patrick is bored at the allergist.  I'll take it.  Bored at the allergist is way better than excitement at the allergist.

We found out that Erin has a kid in her class with a severe peanut allergy, so she's getting only peanut safe snacks at school now too.  (the preschool is nut free).  Thankfully we already have a lot of that stuff for P, so it's not a big deal.  If she starts asking for peanut butter and jelly, we will get some wowbutter or sunbutter.  They keep using food as a reward for good behavior, so we went on amazon and bought some super cheap party favor stuff to donate to the goodie box.  I'd rather do that than have her always bringing home candy (half of which her brother can't have).

This is getting easier day by day, week by week, etc... The kids are more aware, we are more confident, and our circle of friends, schools, etc... that we feel are safe is always growing.

Happy summer everyone!

Plans and new injectors and 504s oh my...

Day 81 - Friday
Aug 16, 2013

Warning this one is long - topics: Preschool update, new "action plan" forms that are MUCH easier to read in a hurry, new types of injectors, and public school 504 plans.  If you don't know much about allergies or don't have a school age kid, skip the 504 part, but know it's a lot of stuff to digest/deal with! :)

Preschool news - P's teachers got a kick out of his Bugabees book.  Started good conversations with the kids and the teachers about what allergies mean and don't mean.  (One of the kids asked if they were still allowed to play with the allergy kids and teacher with an allergy).  Better that they ask the funny stuff now!  One of the teachers has a milk allergy, another child has a fish allergy, and one more is allergic to eggs and peanuts.   So he's not the only one in his room.  We ordered a copy for the schools (the preschool and the elementary school).  He's also been wearing his allergy bracelet (he calls it his allergy watch) more often.   It's finally sunk in with his gymnastics coaches (they've stopped giving him candy from the treasure box that he can't eat, and automatically offer him other options - stickers, extra hand (and feet!) stamps, etc...)  That's a relief for me.

Allergy "action" plans - FARE has a new newsletter and a new easier to read, up to date action plan "form" that adheres to the new guidelines.  Simply put - when in doubt, use epinephrine, it saves lives.  Antihistamines (Benadryl) are being moved to a secondary treatment instead of the primary.  Especially in cases where asthma is an added concern (which applies to us).  We're going to talk to the doc about updating our plan using the new form and copying it for preschool, babysitters, his backpack, etc...
It also has photo directions for all three of the current style epinephrine injectors (Epi-pen, Auvi-Q, and Adrenaclick).  The new ones coming on the market has driven the prices WAY down.  Both Epi-pen and Auvi-Q have $0 copay deals going on right now.  Can't beat some competition!  We much prefer the auvi-q for the moment (less force required to inject, time to injection complete is shorter, it talks and tells you what to do, and it has a much smaller form factor).  We carry 2 injectors, dissolvable benadryl tabs, and usually an emergency (albuterol) inhaler with a spacer.  Check out the new action plan if you know folks with allergies, the guidelines have changed (and should!)  The evidence is there.  Epinephrine saves lives, holding off on using it has cost lives.  When it doubt, get the epi out.

I've also been reading about what we're going to have to go through next July (gasp!) when P starts in public school.  Individual Health Plans (IHPs) vs 504 plans or IEPs.  We have an IHP with Erin for trichotillomania/trichophagia, but it's not a binding agreement.  A 504 would force accommodation for a "disability".  And not being able to breathe by ADA (Americans with Disabilities Act), is indeed a disability.  IEPs are considered more special education needs, 504s are considered regular education (with some accommodation).  I hesitated at first to think it was worth the hassle, but then I started reading about teachers that didn't move epinephrine injectors around as the kids shifted to specials (art, PE, music, computers, etc...) and even on field trips.  Lost injectors that couldn't be found at the end of the school year.  Kids being seated next to kids at lunch eating their allergens.  (especially the ones who have had airborne reactions - usually peanuts).  I wasn't reading looking for horror stories, but I was reading looking for how and why and when to do a 504.  It's mind blowing how complicated this can get and all the myriad of options that are out there.  I finally found some good stuff (See #4).

Samples and links:
1) http://www.kidswithfoodallergies.org/ (paid family membership) - resources, schools, Sample 504 plans.  They discuss things like nut free classrooms, trained staff, epinephrine follows student, self-carry options for students, wipedown procedures for desks and cafeteria, handwashing post handling any food for all students in the class, rules for food brought in from the outside, rules for specials (PE, media center, computers, etc..) and field trips, no food sharing, actions / consequences for food allergy bullying, letters to go to all class parents from the principal, relationship with school nurse and/or cafeteria staff.
2) Contact the department of Educations OCR (Office of Civil Rights) - if denied - they are the enforcers for 504 plans.
3) 1702 form (for Wake County, NC - medication form required for albuterol, epinephrine, and benadryl, etc...)
4) Team Anaphalaxis website/guide - great FAQ!
5) You have to request in WRITING a 504 evaluation based on allergy / anaphylaxis diagnosis.
Also need a letter from the allergist stating that anaphylaxis can be fatal and that epinephrine has been prescribed to go with your request for evaluation.  (Proof of eligibility).  Get a 504 approved BEFORE you start talking about accommodations (and only discuss those in a 504 meeting).  504s allow for unique needs (PER student).
6) http://www.ed-center.com/504 (504s vs IEP)

My brain is scrambled, but at least there is good info out there, you just have to sift through it all and take good notes, get organized, and follow your plans.  We'll get there - no rush, but good to know we have a lot of work to do next summer.

A good book and good friends and family

July 30, 2013
Day 64

Things have calmed down from some of the previous posts (although there will always be chaos in our lives, I think that's just the normal we have to adjust to!).  We took a vacation, had three birthdays, a pig pickin, scuba, softball, a double ear infection (mine!), started elementary school again (Erin), and lots of fun with friends.

God bless the grandparents (all 4!) for watching the kids and for dealing with the allergy scariness that was going on right as we had to leave town.  It helps to have family that will take good care of the kids (and the kids are getting easier as they get older, the no diapers thing has made travel SO MUCH EASIER) :)  P got a cool new book about food allergies from the grandparents which has generated a TON of questions and talk with the kids about allergies, so we are big fans.  If you have kids with food allergies, or friends with them, check out: The Bugabees, Friends With Food Allergies.  I think the preschool and elementary school may be getting copies of this too.

In allergy news, we upped the dose last week to 75mg, which is starting to look like a pretty decent amount of nut protein.  (no longer a wisp of powder in the cup).  That went well, and although he's a bit snotty this week (which can be a concern for a higher risk of reaction), he's doing well.  Zyrtec and his normal asthma meds seem to be keeping things under control.

The only day that I should have been really stressed was the pig picking, but thanks to a lot of good friends, some large allergy stickers/allergy bracelets, and some serious talks with the kids about not eating without mom and dad - we had no issues and I was way more relaxed than I usually get to be.  I hate big parties sometimes with lots of strangers and food.  It used to feel like all I did was follow him around like a puppy trying to protect him.  But times change, kids grow up, and friends step up (and tell us that they are watching too).  BTW, have I mentioned I love you guys?  The pig, the company, the food, the friends - awesome.  What more can we ask for?  We have a lot of great things in our lives.

If anyone has other good book recommendations for the kids about allergies, let me know - I see some options out there, but haven't read any of the others.

Thanks for following us on this journey.  Some other family and friends may soon be joining us on this roller coaster (with different food allergies), and I'm sure we will all have our times to be scared together.   But we can also celebrate DAY 64!!

2x4 reminders that we aren't in control

Day 44/45 

July 10-11, 2013

So... right about the time that we get big heads and think that we have everything under control in our lives (which admittedly is rare!), something or someone comes along with a 2x4 board and whacks us in the head.  It might or might not be a necessary reminder that we are not in control.  Saying that; everyone is fine; it's just been a nerve wracking two days.  Remember Tuesday that P was complaining about a sore throat during his up-dose appointment?  Well cue Wednesday morning, and he takes his 50mg dose at home and off he and Dad go to speech therapy.  I get a very nervous call from Daniel at about 9am - Patrick is saying he's going to throw up, and that his tummy hurts and his throat hurts.  Daniel and I both race home trying to get there before he gets sick.  We don't make it quite that far, Patrick throws up in a bag in the car.  Hooray for an age where there is some control/ability to aim!!  We'll take our silver linings wherever we can get them thank you very much!  So we both get home and Daniel calls the allergist who calls us several times over the next hour to discuss symptoms and what to do.  (This happened within the two hour window when the dose was given).  Patrick has a notoriously sensitive stomach and gags easily, so snot related vomit is not an unusual thing in our house, but he didn't seem at all snotty or sick otherwise.  We can't always tell if something is just snot or if he's sick, or in this case if it was allergen related.

There is no fear like staring down your child worrying that they might suddenly have breathing problems (again).  We've been down this road before both with allergy exposure and asthma, and it's heart stopping as a parent to watch them struggle to just BREATHE.  So all was well, but it was an adrenaline high nervous couple of hours.  Patrick had no idea, we tend to get in this eerily calm mode of do what must be done, no nonsense, no emotion, don't show fear…  My brain only freaks out hours later when everything is fine.

The good news is that he had no other symptoms other than upset stomach and sore throat.  He could swallow (we checked), and seemed happy playing with toys/electronics but complained now and then.  This went on until lunchtime when he finally said he was feeling better.  Given what he ate for lunch, he clearly felt a LOT better.  He ate a full size sandwich and asked for more food.  We agreed with the allergist that Thursday's dose needed to happen in the office so they could keep an eye on him in case this happens again.  

I didn't realize how frazzled I was until I took a break to go to the pet store and drove past it multiple times, and then two different friends told me to stop trying to work for a while and take a break to calm my brain.  Sometimes we all need reminders to stop spinning aimlessly and sit still so we can then process what's happened and let go.

Now it's Thursday morning, and we're back in the allergist's office going stir crazy.  The doc checked out Patrick and he seems totally fine, and then we gave him his dose and we're waiting out the two hour window in the office.  The nurse stopped in to tell me to try to take these in stride, as this happens with every patient doing desensitization at some point.  I'm not sure why but it was reassuring and heartfelt, maybe just another human being saying I know it's scary, but it's ok.  This has been a nutty week, but we will keep faith that we are doing the right thing and that we (as a village) can keep him safe and make this work.  It sounds trivial, but it was a scary day yesterday.  Thanks for the good folks who lent an ear/hug/sanity check/prayer!

It takes a village...

Day 43 - 50mg
Well, we've doubled the dose for the last time - and all seems to be going well.  A few more hours at the allergist and off we'll go again.  The last week has been chaotic and fun - full of travel and food and great friends and extended family.  Some mayhem goes with that though - everyone cooking for our crew needed to know to check ingredients (or check with us), which worked out easily enough.  We went to a family party on the 4th to watch fireworks by the water and had to be extra careful to keep Patrick out of the house, as there were lots of desserts/foods with walnuts and pecans, but considering everyone was out on the porch, it wasn't bad.  He was thrilled that he got to see firetrucks, an ambulance, and fireworks.  Every time he asked for food we broke out the stash in our cooler (ELF snickerdoodle cookies, juice boxes, squeeze applesauces, squeeze yogurts, and our safe "granola" bars).  It also helps to have friends who are aware enough to stop him from going in the house without an adult.  Love you guys!!  It was great to get some time that felt like we could relax, and usually parties are not one of those times, so thanks to everyone who watches out for him!  We had a grand time fishing, boating, swimming, playing frisbee, and just general silliness in the sun and water.  The food was fantastic (everyone took a turn cooking), and it was just generally awesome to take a break from the mayhem of home.  Staying organized certainly matters - we dragged a cooler with epinephrine all over the place and out to the sandbar repeatedly and just made sure it stayed in the shade or close to some cool packs.  We kept a steady supply of fresh snacks (veggies, ranch, hummus, guac, whole fruits, and a few boxed items) around and it made it easy to stave off hungry kids or risky foods.  Couldn't have asked for a more fun crew of friends / family.

The last day was a bit of a rush to get out the door, ended up swinging by the beach for one last dip in the ocean (Patrick didn't mind)!  Traffic was nasty getting towards home, so we ended up having to go straight to the softball game via back roads.  This is one of those times it's a good thing I'm an overprepared mom - I scrounged food, water, clothes, and enough gear to play out of what was in the car.  (Thankfully I had my glove with me!)  Patrick got to meet a whole new crew of friends and spent the whole game cooling us off with a squirt gun!  It still feels weird to leave him alone with anyone (even for a moment) that doesn't know his history, but folks were great with him.  I admit I told him not to eat anything I didn't give him every time I left the dugout. :)  He could have cared less, he was happy to keep filling up his squirt gun and shooting us with it.  So thanks again to yet another set of friends for helping to both entertain him and keep him safe.  It takes a village right?

This is getting easier, more normal, and while we tell his story a million times - it's a good thing.  More folks are surprised by the intensity of his past reactions, and that makes them rethink what they know about food allergies.  We are learning new things all the time too.  The latest FARE newsletter talks about various methods of desensitization and that people shouldn't be doing this outside clinical trials.  :)    Clearly we disagree there, but at least our doc has a long history of those exact clinical trials and we feel totally safe in his care or we wouldn't be doing this.

He did scare me a bit at the end of the appointment - he was saying his throat hurt, but he was grinning and acting goofy.  We stayed longer and kept asking him questions and trying not to encourage him if he was being silly.  (He has never false reported before).  He seemed fine and eventually said he was fine.  (We also gave him water and a squeeze applesauce and he was drinking and swallowing just fine).  Interesting.   If he's going to start saying he's having problems when he's not this could get complicated...

So thanks to our village - you guys rock!

And then there was joy...

Day 32
We're learning bit by bit how this works (and what we've done wrong like pre-dosing with albuterol last week).  But as stressful as this has been (especially in the beginning), there has also been a gradual building up of hope and a joy that we're doing something to protect our little guy, long before he has the ability to do it for himself.

Some awesome things this week that are related to food allergies:

• No reactions to the new higher dose (25mg) - yay!
• Big sister ordered ice cream for herself and her brother at ChickFilA (by herself)
• She grilled the guy at the counter to find out if the ice cream cone was safe (and then brought me a list of the ingredients)  - she was super proud or herself!  (Don't tell her we already knew they were safe, it was a really good experience for her!)
• The peanut patch article from the UK has thrilled a lot of peanut allergy parent friends.  It's great to see hope in ourselves and other people.
• Random friends have asked to use the auvi-Q and epi pen trainers to make sure they have a clue how to use one if it's ever needed for an adult or child.  (people with no food allergies).  This touched my heart because they want to protect our kids and other friends.  I had no idea how many people I knew who do have an allergy of some sort until this year.
• We're figuring out how to keep the epinephrine for outdoor summer activities - this is a PITA but can be managed.  (cool packs, but not ice packs).  It can't be too hot OR too cold.  Big Pharma friends please come up with some sort of seriously shelf stable epinephrine!  We put the cool pack around the injectors and then put that in a waterproof bag, in the very top of a cooler or outside pouch and keep it in the shade.  At least we found a way to make it work. :)  And that means more times fishing, or on boats, in the ocean, at the beach, softball games, etc... and outside time is good!

So be grateful for the joyful moments.  Revel in them.  Share them.  We spend enough time scared, let it go and soak in the good moments.

Day 29 - 25mg

June 25th, 2013

Back to the allergist today (or as P says "the applesauce doctor").  The puffy eyes and face from the cold last week are fading out slowly, which is a relief.  The new higher dose of the walnut protein is 25mg (for the next two weeks).  I can't believe we're at a month already of our desensitization program, and the dose is more than 4x where we began.

The doc told me that if we ever again have concerns about his asthma (last week) - not to dose him but to call them for a sanity check.  If he IS having an asthma flare, he needs to not take a dose then.  (The risk of causing breathing problems is too great).  Good to know.  He never wheezed last week but he had a nasty cold for a bit there and a puffy face.

In the news - there is always new research and articles on different trials - this one is pretty neat for those with peanut allergies.  A patch would be pretty easy to cope with for desensitization! Peanut patch could save lives.  A neighbor sent that over and I thought I'd pass it on.  I'm still really excited that our friend's child has been declared peanut allergy free after 4 years in the Duke/UNC trials.

It seems I'm finding (or folks will send them over) a new article every day.  Canada is apparently a good travel destination for allergy sufferers, and Air Canada is the first airline to have peanut free buffer zones on planes (by government order, which I find startling).   Can't say I'd pick a destination based on allergens right now, but if we were allergic to peanuts that might be a different story.  If you had to pick something NOT to be allergic to, peanuts are pretty high on my list.  Milk, eggs, and soy would be hard to avoid, but at least most of those folks don't react to it being in the air around them.

So all is well, there are good studies and trials coming along, it is going to take forever, but one day there will be standard courses of treatment for these severe food allergies.  There have been a staggering number of people coming through the allergist's office this morning for allergy shots today too.  Never had to do that, but I'm sure they are unfamiliar with our applesauce mixed with allergen routine too :)

Day 26 - asthma update and what in the world is a filbert?

The good news is that little man seems to be improving with the puffy eyes and allergy symptoms.  Still has a meaty cough but that will probably take longer.  The great news is that there has been no trace of wheezing.  Hooray for the QVAR inhaler!  That's two colds down since we started that medicine daily, and I think I'm a believer now that we have the asthma under control!  No more emergency trips to the peds office and urgent care? (ok maybe I'm being a little optimistic?)

No reactions to the walnut doses but we're still watchful every morning for the two hours after his dose.

We were checking labels this morning and found that hazelnuts can be listed as filberts (Arnold's bread), which I had never seen before (at least it listed both).  Add that to the mental checklist of things we can't eat/have on hand...

Enjoying some quiet time in the morning with friends waiting for the rain to let up - we have fishing in our future if the winds don't stir up too much.  Else we might be shore fishing :)

The applesauce doctor

Day 23 - June 19. 2013

Today was a little tough.  P's face is red, his eyes are puffy, and he clearly doesn't feel well.  It's a little scary when he constantly looks like he's on the border of an allergic reaction and you're giving him a known allergen.  He made it through the day ok (with some extra help from the nebulizer just to be safe).  After dinner he started rubbing his eyes really hard and his face was getting really red, so we gave him Benadryl and kept an eye on him.  We weren't at home or we would have tried the children's Zyrtec, but we don't carry that with us.  I told him he might have to go to the doctor tomorrow and he replied, "But not the applesauce doctor, the OTHER doctor".  :) Poor kid sees a few too many doctors, but that was really funny.  I'll have to tell the allergist next Tuesday that he is known as the applesauce doctor.

All is well, just had to share the applesauce doctor and that it's worrisome when he's puffy already to give him his dose of walnut powder.  But... we have friends who just posted that their little girl is now officially peanut allergy free!!!  (After ~4 years in the Duke/UNC trials).  They are thrilled and have been through a lot to get there, but it's so great to see a success story with people that we know for nut desensitization.  There is hope for us too.  (And maybe one day this will be an FDA approved treatment!)

Day 21 - croutons, cookies, and summer colds, OH MY

June 17, 2013

Warning - here begins my rambling:
On the mind today after conversations with several good friends, some of the less obvious culprits for tree nut allergens are:

• Croutons - no idea why, but these are REALLY hard to find that don't say "processed in a facility with"...
• Corn chips (tortilla chips) - a few brands we can't use
• Pretzels - this one seemed odd to me but some of them used shared equipment
• Cereal Bars - most brands also make granola bars and most granola contains nuts we can't have
• salad dressings!
• breads - the fancier the bread, the more likely they make a nutty bread variety on the same equipment.  The cheap breads tend to be fine but we always double check the labels (and double check each other).

Essentially, if it has a label, READ IT.  If it doesn't have a label and you didn't make it or it didn't grow that way, DON'T EAT IT.  Ask those awkward questions (politely!) of the waiter about what's in the dessert crust (get the chef), or the restaurant owner, or your friends.  Be kind, but ask.  If you aren't sure, leave something off your kid's plate.  That trip to the ER is not worth letting them have a bite of that cookie they are begging for.  Go get the safe ones out of the car.

Some favorite brands that are safe for P:

• Walgreens granola choc chip bars for emergency kid food - these are processed with peanuts and almonds, but we can have both of those
• Enjoy Life Foods - (ELF) - their soft cookies are the best top 8 allergen free cookies I've ever tasted.  We particularly like the snickerdoodles.  They don't taste like the snickerdoodles I grew up with, but they are delicious.  
• Enjoy Life Foods - bars - hard to find - but so far yummy.  The cherry cobbler bars were a hit for the race last weekend with the little man.  I'm not a fan of lots of processed foods but sometimes it's nice to have something that can go in the stroller for emergency snacks other than squeeze applesauce!
• Lucy's cookies - major allergen free - can get in small snack packs of 3 cookies.  I keep these in the car for restaurant dilemmas (if he can't have ANY of the desserts), or if everyone else can have something that he can't.  (This recently happened at Moe's after a playdate in the park, every other kid is eating a cookie and he couldn't have any of the three options).  Up until now he'd just take a lollipop but he's finally starting to care about being different.  So yay for Lucy's cookies or tiny oreo packs.  (ELF cookies taste better but don't have small packs).  You can get 18 of the Lucy's 3-packs on amazon for a good deal if you keep an eye on the price. (variety pack)  That will last us a VERY long time. 

Other random things - I'm getting coupons and emails from all sorts of allergy things lately.  FARE (the food allergy website) sends out newsletters.  The one today had links to medic alert bracelets.  We have an engraved medical ID, but so far I haven't seen the need to pay for a monthly service for this.  Mabel's labels has some cool allergy alert stickers that they print your specific info onto.  (good for short term things like the preschool at church).  I still tell them every single time we drop him off and write it on his nametag on his back to make sure they don't give him food outside of the stuff they show us before we leave.  (usually goldfish and apple juice).  

Little by little P seems to finally be grasping that this allergy thing means something.  This is real progress from six months ago.  He's talking to friends at preschool about it, and he can now (finally!) tell you that he's allergic to walnuts, pecans, and hazelnuts.  (He used to pick something at random and tell you he was allergic to bananas.... (he's not!))  And, (hooray!),  you can more or less understand him.  (Yay speech therapy!)  I'll take it.  He's recently decided that his allergy bracelet is indeed a bracelet with his info on it and not a watch.  (He has been very determined for a while that he needs his watch!) His new teachers (new class at school) are adjusting to him pretty well too.  One of them has a kid slightly older at the school that has an allergy.  Both seem fine with the idea of actually using an epi auto injector.  Which is great, because those things are intimidating.  I do find it odd that epinephrine is stored in the classroom, but benadryl is at the front desk.  Don't get me wrong, I'm THRILLED that the epinephrine is even IN the classrooms.  Time matters if you need one of those things.  Our old daycare kept them locked up in the office.  I wouldn't want a teacher to have to hesitate to leave a class alone to run to the office or call up there and have someone not be right there.  I'd rather they err on the side of giving him the shot if they think he needs it and having it 4 feet away.  They also have photo cards on the medicine cabinet in the room.  Each kid with an allergy has a card with a photo, list of allergies, and list of meds.  (So a sub or floater will know at a very quick glance which kid and what meds are available in the room and up front at the main desk).  

In other news, I noticed P had puffy eyes when I picked him up and he was coughing on the way home.  That's NOT a good sign with this little guy, who goes from 0 to wheezing often in 4 hours or less.  I gave him Benadryl tonight to help as an antihistamine, and the cough was deep enough we broke out the nebulizer and Xopenex.  I'd have used the albuterol but it winds him up so badly I figured this was the lesser of the two evils.  He has a better chance of getting to sleep on Xopenex.   Now I have to stop from going in every hour to see if he's breathing ok.  At least we have a nebulizer and we're really close to a neighborhood ER.  Asthma and allergies they can certainly handle! And if he's coughing in the morning the allergist is going to get a call before we dose him.  Summer cold plus asthma plus allergen makes mom a nervous nellie.  

What else.. the excema is still there and mild, no real issue here.  He's taking his daily walnut dose with applesauce like a champ.  He doesn't bat an eye anymore - how quickly normal changes and how resilient and adaptive little kids can be!

Thanks to all our friends and family for your kind words (and for putting up with my long winded rambles).  Love you all!