Thursday, November 7, 2013

In the news and eating out

Day 167 (dose is 200mg)
Nov 7, 2013

So the good news is that allergies have been in the news a lot the last few weeks. The CDC finally posted voluntary guidelines for schools (with some GREAT resources linked).  That will definitely be in our toolkit when we go to talk to the elementary school this year for P.  Some interesting commentary about kids being allowed to self carry, and clear definitions that an allergy constitutes a disability in the language of the ADA (because anaphylaxis) puts breathing, eating, life at risk.  That language is necessary if you decide to ask for a 504 plan (accommodation based on a disability).

Also cool - the Federal bill for encouraging stock epinephrine in schools passed!  This is awesome.  It encourages schools to have better plans in place, to stock unprescribed epis (25% of school allergy emergencies are for unknown (undiagnosed previously!) allergies.  This might save my non-food allergic kid one day (or yours!) when they discover they do indeed have an allergy.  It doesn't mandate anything, but it helps encourage schools to change (and to get federal funding for doing so).  It needs Obama's signature and then it will become law.  It passed the senate on Oct 31st.

Fun stuff - Halloween went off without a hitch, the kids were spiderman/batman and Doc McStuffins (a vet disney character).  We trick or treated with friends and neighbors, and had a ball.  Everybody was very careful about checking candy, and anything labeled as tree nut unsafe or not labeled went right back in the bucket to hand out (get it out of the house!)  It's just one more time of year where a little more caution is in order, but it went really smoothly.

Eating out - still having good luck (although every now and then waitstaff needs a little extra grilling).  West Park Tavern and JD's are forever on my love list for their extra care.  Not too happy to find out that Papa Murphy's pizza dough is listed as not nut safe, and papa Johns is now selling a cookie pizza that is not nut safe.  The word on the allergy blogosphere is that cross contamination is an issue (dough handling, pizza cutters, etc...)  So looks like both of those pizza options are no longer options.  We don't eat it very often but that stinks.  We're not sure that he'd react with the minute amounts of cross contamination but is it worth the risk?  :(  Panera has also pretty much turned into a CYA restaurant.  They have a great allergen list / book, but plastered on every page is the warning that everything might touch everything so run for your life.  (this is me being snarky and rolling my eyes).  This country is so litigious.  If this keeps up he's never going to be able to eat anywhere without a CYA warning.  Which means he might not take those warnings seriously as he gets older.  That bugs me.  All the store bakeries are out for the same reason.  Those CYA warnings on the labels of everything they sell.  They might run a really clean shop and the risk might be zero.  But when the labels say may contain... you lose customers that can't take that risk.  So maybe long term all the chain restaurants are going to be out (not sure that's a bad thing).  The local eateries tend to have better (less processed) food, and actually care and take extra precautions.

All is well - just have to remember to read the labels, every time.  Ask the waitstaff, every time.  Don't eat without the epis with us.  That used to be hard, which is almost amusing now.  We adjust.

Thanks for traveling this road with us!
Alli, D and the mini waltons

Wednesday, October 16, 2013

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.

Sunday, September 22, 2013

Are there any walnuts, pecans or hazelnuts in that?

Earlier this week we had about a 6 hour stay at the allergist office.  Patrick was due to go from 100mg to 125mg so we go in and do the normal thing, they give him what I think is 125mg, we wait 2 hours and then we leave with the doses for the next two weeks.  While we are riding down the elevator I notice that the bag says 100mg....hmmm that isn't right.  We go back and after about 10 minutes figure out that they thought Patrick was supposed to be going from 75mg to 100mg instead of 100mg to 125mg.  We verify that he has indeed been on 100mg for the past 2 weeks so at that point we need to give him another 25mg and observe him for another hour.

At this point it was about 12:30 though and we were both hungry so we ran down the street to McDonalds before giving him the additional 25mg.  When we got back to the office Patrick pointed to his happy meal and asked me "Are there any walnuts, pecans or hazelnuts in that?".  I told him no and gave him a high-five, a big hug and told him it was awesome that he asked that question. He's asked this a couple of times now and we are excited that he is starting to think about it.

Thursday, September 12, 2013

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...

Wednesday, September 4, 2013

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!

Friday, August 16, 2013

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) (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) (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.

Tuesday, July 30, 2013

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!!

Thursday, July 11, 2013

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!

Tuesday, July 9, 2013

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!

Friday, June 28, 2013

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.

Tuesday, June 25, 2013

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 :)

Saturday, June 22, 2013

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 :)

Wednesday, June 19, 2013

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!)

Monday, June 17, 2013

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!

Tuesday, June 11, 2013

Just how small is 6 milligrams of walnut?

It is hard to wrap your head around what 6 milligrams of walnut looks like so here is a photo.  This is the dosage that Patrick took for the first two weeks.

And here is a 12mg dosage, this is what he started on today and will be on for the next two weeks.

I've never weighed a walnut but according to joepiebaker on they normally weigh between 18 to 23 grams but about half of that weight is in the shell.  Just to make the math easy let's say a walnut weighs 10 grams.  So Patrick's 6mg dosage for the first two weeks was 0.0006 of a walnut per day.  At that rate it would take him about 4 1/2 years to eat one walnut!  That is a really small dosage.

This on the other hand is a ginormous amount of walnuts.
My best guess is there are about 12000 walnuts in that photo. At 6mg a day it would take 54,000 years to eat all of those :)

Day 15 - upping the dose

June 11th, 2013

Back to the allergist today to up the dose.  Almost forgot this morning I had the 6mg dose out before I realized I can't give that to him today.  Routines...

Little boys get bored fast in rooms at doc offices.  He was zooming around the room wearing a cape on the rolling stool again, pushing off the walls and furniture.  We got to "drive" around the room for a while on the stool and then distracted with toys.

Today's dose (and the new daily dose) was 12mg.  We both got bored but we can leave after 2 hours or so.  Grateful that we were bored :)

We discussed the excema but no one is really concerned.  He's always had a mild case of it and this seems a little more than normal but nothing to worry over.

Will add another photo of super p later - cant seem to add it from the phone interface

This was superhero P zooming around the room.  It was a long morning at the allergist - but better to be bored than excited there.  2 weeks until we go back to up the dosage!

Monday, June 10, 2013

Day 1.5

[husband of the blog owner speaking here]
My wife tackled the first day of the desensitization program at the allergist office and I was on deck to tackle the second. I sent this email to my team at work to let them know about the desensitization program we were putting our son through.  My wife said I should post this on her blog since it shows a different perspective.

"We’re starting our son a 2 year walnut desensitization program for his walnut allergy so I’ll be working from his allergist office tomorrow morning.  They grind up very very tiny amounts of walnut (like 1/100th of a walnut) into powder form and then mix it in with applesauce to get kids to eat it.  We give him this powder concoction every day for 2 weeks then go back to the Dr’s office where they try an increased amount, assuming he doesn’t react then we give him that amount for the next 2 weeks….over and over again for 2 years until he can eat a reasonable number of walnuts without going into anaphylactic shock.

Once that is over we tackle pecans (another 2 years) and then hazelnuts (another 2 years).  So I’ll be working from the allergist office roughly one morning a month for the next 6 years :) "

Friday, June 7, 2013

Day 11

Day 11!  
We've gotten WAY more questions and referrals to friends of friends with kids with new allergies than we expected.  It's great!  (and a little scary!)  
Some good links for parents of kids with food allergies: (great forums for parents to ask and answer each other) (local support group for parents of kids with food allergies)

Links for useful stuff: (order cases, cooling blankets, holsters, etc..) (medical ID bracelets - lots of kid friendly options)  - the only actually good soft cookies that are top-8 allergen free that we've found so far. :)  You can get bars on amazon, cookies at earth fare, whole foods type stores.

Thursday, June 6, 2013

Day 10

June 6th, 2013

The excema on his arms is still there and persistent - trying lotions and all of the usual stuff.  I washed him in super sensitive baby soap, but it's not like they use that at preschool.  Most of the bumpy spots are on his upper arms.  We'll see how it goes - if it keeps up we'll talk to the allergist about it.

Today's dose was easy - he didn't even bat an eye at the two or three bites of applesauce.  Who knew they'd adjust to a change at breakfast so fast!

Nothing else to report which is GREAT news so far.

Wednesday, June 5, 2013

Day 9

June 5, 2013
Today was pretty easy - again no complaints/arguments about the morning dose.  We had a speech appointment during the two hour window so I was keeping a close eye on him.  He kept scratching his lower arm and said he had a mosquito bite, but I saw a lot of bumps on his upper arm and was a bit nervous.  There were no other symptoms or signs of alarm.  And after two hours the little bumps were still there (and he did indeed have a mosquito bite on his lower arm).

That being said, we also have had a minor change in laundry detergent - the bumps were ONLY under his shirt.  So we'll be switching back to the slightly different detergent we had before and keeping an eye on that.  

All is well - day 9 is in the books. :)

Interesting pubmed article about cross-reaction incidence for hazelnut, walnut, and pecan (interesting those are the ONLY three he reacts to on the RAST blood tests).  I knew walnut and pecan were in the same genetic "family", but was surprised to see the link to hazelnuts.

Tuesday, June 4, 2013

Day 8

June 4th

This morning went fine - this is slowly becoming normal to serve up a small dose of applesauce and "allergy medicine" every morning at breakfast.  Both kids are getting used to this and the commentary on it is less each day.

Q and A time - we've gotten a lot of questions so here's our attempt to answer them.

  • Why did we do this?  We feel that the risk is better taken now in a clinical and controlled setting than later (in school for instance) when we won't be right there to help Patrick take the right steps if he has an accidental ingestion.
  • How did you find out about all this?  We've been following some folks in the Duke/UNC peanut trials, watching for trials for tree nuts US wide, and tracking some of the studies out of stanford.  (wouldn't you hope for a "cure" if it was you!?
  • What are SLIT and OIT?
    • SLIT - sublingual immunotherapy is where they dissolve a small amount of the allergen in a liquid and place it under the tongue.  It is one of the two common methods of administering an oral allergen during desensitization therapy or clinical trials.
    • OIT - Oral Immunotharpy - the allergen is ground usually into a powder and mixed with some very simple food (applesauce is common) - then eaten by the patient.
  • What are you guys doing?  We are doing OIT with one nut (walnut powder) and mixing it with applesuace.  The doses are tiny.  (barely a whiff of powder).  Our protocol is pretty similar to the one for the walnut OIT study at Arkansas Children's. (see link below)
  • Where can I read about SLIT and OIT and what's going on in the news?
    • NY Times article -  Stanford's Dr. Kari Nadeau and multiple desensitization trial
    • Walnut OIT study- Arkansas Children's Hospital - essentially can desensitizing a patient to 5000mg of walnut also help with desensitizing them to a second nut that was not part of the trial. "Dosing begins with a one-day walnut oral desensitization protocol. Starting at 0.1 mg protein and increasing every thirty minutes until a maximum dose of 6 mg is reached or until allergic symptoms develop. After the initial escalation day, subjects achieving at least 1.5 mg and up to 6 mg of walnut protein, will continue daily dosing with dosing build-every two weeks to a maximum dose of 1500mg walnut protein at 34 weeks. A daily maintenance dose (1500mg or the highest dose reached by 34 weeks) will be given for 4 weeks followed by a 5 gram protein oral food challenge to walnut and a 5 gram protein oral food challenge to the second tree nut (at 38 weeks), after which the study will be unblinded. Active treatment subjects will continue on the 1500mg walnut protein daily dose for a maximum of 33 months."
    • Duke Peanut OIT - article on their current results from their peanut trial
    • Spring 2013 newsletter from FARE - has an article on evaluating immunotherapies -  SLIT and OIT.
  • Where are you doing this?  In our allergist's office in the beginning and then at home.  Whenever the dosage is increased we'll be in the doc's office.  Day 1 was the entire day, day 2 a few hours.
  • What's the current dose? We're at 6milligrams right now.  A milligram is a few grains of powder.  It's pretty tiny!  That's about 1/100th of a walnut.
  • What's the desired result?  Initially - just some minimum of protection if he were to accidentally ingest a bite of something with walnut in it.  Long term - we're hoping for true desensitization and retraining his immune system not to over react to walnuts (and later other nuts).
  • Is there a guarantee that this will work?  Simply put, no.  But we wouldn't be going through this if we didn't think it was worth it and would improve his risk and potentially quality of life.
  • Is this right for everyone?  Of course not.  It's scary.  There are risks.  But we feel like the controlled risks are greater than the uncontrolled ones (when he's in school for instance).  The cost is also prohibitive if you're not part of a study (and we are not).  Asthma also complicates being involved in a study and often precludes kids (we fall into this category).  Asthma needs to be well under control or the risks would be much higher.  We couldn't start until we sorted out our asthma issues for several months.
  • What's the timeframe?  Roughly two years per allergen (nut in our case) - so we're looking at potentially 6 years.
  • Why doesn't everyone do this? We can't be 100% sure it will work to the point that he can just eat walnuts one day, it's a crazy long process, it's a lot of work and time, and it's expensive.  It's not an FDA approved treatment yet.  One day...

Keep them coming friends... we'll answer whatever we can :)

Monday, June 3, 2013

Day 7

June 3rd
Wow - it's really been a week??  We are taking the daily dose with breakfast and getting no complaints or arguments over it.  Big sister helpfully told little brother that he was eating walnuts this morning and we had to do some backpedaling.  We don't want either of them to think that he can go out and eat a walnut.  She's technically correct, but we've been telling him it's medicine to help with his allergies.  She might get the difference, but I don't think he does.  Thankfully all is going well.  We're still on the 6mg dose and will stay at this level for another week.  The grandparents didn't have any problem dosing him over the weekend (THANK YOU!) and we've seen nothing in the 2 hour window after each dose.  His teachers at preschool are also keeping a close eye out and we're letting them know on school days what time the "window" closes.  I know it makes them a little nervous, but we are all adjusting to the new normal.  Of course now he's about to transition to a new class at school - so we'll have these conversations again with the new teachers.  Folks have generally been very supportive, if a little nervous.   (Trust me we understand!)  Slow and steady is the plan moving forward.

The weekend off for a wedding was just what mom and dad needed.  Just breathe - and adjust every day (and always) to the new normal.  Find the good in your life and let that be your joy.  It's already there if you look for it.

Thursday, May 30, 2013

Day 3

May 30
Day 3! So today was the first day with no office visit.  We gave him the 6mg dose at about 7:30 and I waited as late as possible to drop him off at preschool.  We saw no signs of a reaction at home and we talked to the front desk staff and his teacher to make sure they knew what to look out for.  He's about to move up to the next class at school so we will probably be explaining this again soon.  His current teachers adore him and I know they were nervous this morning.  They are very sweet!  He was doing just fine so I left him at school around 9.  The window is about two hours to observe him for symptoms.  This was his first day at school this week so he wasn't sure what was going on.  He was fine with me leaving once he got some hugs and tickles from his teacher.  He's such a little ham!

We are going to keep at this dosing level for about two weeks,, so there will be less posts for a bit unless there is anything of interest.  The grandparents are going to have to handle this for a few days, I hope the kids make it easy on them!  It's just hard to leave with the long list of instructions and what if scenarios.  I feel like this week has been an echo of "Five o'clock and all's well!"  The calm is coming back a little at a time.

Wednesday, May 29, 2013

Day 2

May 29th
Today the hubby took him back over there for 2 hours and he got one 6 milligram dose. They kept him for a few hours (til lunchtime) and then he took him home for a nap.  All went well, they checked on him often and he was fine today.

Now we have a ziploc bag full of doses for the next two weeks in little sealed condiment cups.  We will mix applesauce into them and feed them to him once a day and keep an eye on him for 2 hours following each dose.  Day 2 is a little less nerve racking than day 1.  Well poor dad had to deal with a pee accident in the allergist's office, but they both survived.

We're looking forward to figuring out what our new normal will be, we aren't there yet. But the stress levels are slowly coming down.  

Very grateful for good friends and family who are checking in and keeping us sane.  And some new friends in the allergy world.  People don't always get how stressful this can be.  There have been a few folks who felt like their place in the world was to tell us how we shouldn't be doing this.  Wow.  This is our child, our decision.  We view this as long term life insurance in a sense.  And it's our choice, our pocketbook taking the hit.  Be scared for us.  But don't impose your opinion in a vehement way on a hot topic.  You wouldn't do it at work, don't do it to your friends.

The week is slowly looking up.  Keep breathing.

Tuesday, May 28, 2013

Day 1

May 28th

Day 1 for our desensitization.  I slept - eventually.  For a little while.  And woke up repeatedly.  And worried.  And dreamed about things that you don't tell your kids.  And breathed.  And prayed for sanity. :)  

We were at the allergist all day today - they gave him slowly incrementing 
doses of walnut (7 of them).  We started at 8:30am with something like 1milligram mixed into applesauce.  Think a restaurant condiment cup half full of applesauce.  He was mad that it was gone so fast (he had no idea what he was eating!)  Each dose slowly incremented upwards. The largest dose was the last one at 6 milligrams.  That's about 1/100th of a walnut.    I watched him like a hawk after each one and so did the nurse and doc.  We looked for facial swelling, asked him if his tongue was feeling funny, itchy, etc... Checked him for rashes, etc...

It wasn't particularly fun for me, but thankfully he's pretty clueless about such things and it was non eventful.  :)  He was really good too.  I made it almost two hours with just toys and then he started diving headfirst onto a rolling stool and crashing into the walls, and I figured it was time to break out the electronics.  I watched him like a hawk for the first half of the day, and then the doses got faster and faster, but he was fine the whole time.  The amounts they started with were REALLY tiny.  No needles or anything just sitting in a chair all day watching PBS kids and some stuff videos.  He seemed very happy to watch pbs shows almost all day.  Had to pack a lunch (good thing I did, the kid ate like he had never been fed before!).  They turned me loose in the late afternoon and I drove around the shopping center so he would fall asleep.  He napped in the car for about an hour and then we got dinner over on that side of town rather than fight rush hour.  

I keep hoping someone will duplicate the SAFAR (Stanford) trials on this coast.  If we lived out there, I would be BEGGING to get into that one.  Man, it would be scary to treat them all at once... but wow - if we could do that safely...  how awesome would that be?  His age or his asthma would probably preclude him, but we can dream.  And trials are "free".  It's the lack of funding at Duke and UNC for tree nut trials that is holding back more research here.  So ours is not a "trial", and it's not technically FDA approved as a treatment.  So it's out of pocket all the way.

The allergist teased me and asked if I got any sleep... I raised an eyebrow at him and he laughed, he said that was a very normal answer on day one for the moms of little kids :)  

So far so good.  I was a restless loony... but he didn't know.  So all is well.  I went to bed right after the kids did last night I was so tired! 

Tuesday, May 21, 2013

Day 0 - Desensitization decisions

May 21st
We had a long session at the allergist today - here's the lowdown:

  • His asthma is finally under control - YAY!  (insert cartwheels here!)  Sticking with the daily med for the long term as it seems to be really working. QVAR seems to be something that works for us.
  • We have a new allergy - boo - Hazelnuts (Nutella anyone?)
  • His body produced IGE in response to hazelnuts, pecans, and walnuts.  Anything over a 2 is considered an allergy.
  • Hazelnuts was about 2.5 - if that number goes below a 2, they'd do a skin test and if that was also negative would do a food challenge to see if he's allergic or not.  Not really an issue right now but just another nut we have to avoid from now on.  (sigh)
  • Pecans was about 4.5 - pretty similar to the numbers from Nov 2010.  Not his worst, we'll deal with this one later.
  • Walnuts was a 22.  Had to kind of laugh at that.  We might be looking at 3 years to get that number below a 2 on the IGE tests.  We'll just have to see how it goes.  In 2010 I think it was a 3.5 or a 4. Wow.
  • Next Tuesday (28th) I'll have him all day at the allergist to start the desensitization program.  I may be losing my mind in Brier Creek.  So if there's a mushroom cloud over that way, you'll know it was just me. :) 
Wednesday hopefully he'll be at the allergist for a few hours only. If that day goes well then we'll start doing the doses at home.  If not he'll be back at the allergist potentially Thursday and Friday mornings too.

Wish me sanity next week - wait ... wish me sanity every day.