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 :)