Warning… science incoming!

March 20, 2014
Day 300
Dose 1500mg/day

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

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

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

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

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

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

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

Until we meet again...
Alli

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

New year, new reflux?

Day 228
Jan 7, 2014

Happy new year!

A lot has happened in the last two months so we will try to explain briefly.  The powder doses increased by 25mg each time until we hit 300, then it jumped to 400, and now 500mg.  It's a little crazy how much is in the little condiment cups now vs the wisps of powder in the beginning.  He's still doing fine so we can't complain.

We did get pretty nervous before Christmas.  We love the allergist but the devil can be in the details.  They ran out if his walnut powder right before we were set to leave town.  We called every day for three days before they finally admitted they were out.  The short version is they didn't order soon enough and then the shipment arrived late.  We got down to out last dose.  Read that again.  The last one.  And supposed to be leaving town.  I thought we might have to go buy walnuts in shell, wash them, shell and smash them, borrow or buy some medical grade scale...  Ugh!  I thought I had an ulcer by the time they got the powder.  I do have a recurrence of reflux, which is not making me happy.  We did have to pause and remember that we don't have another allergist option.  But at the same time - we politely raised some cain with the nurse and front desk lady.  Daniel got to have the face to face with the allergist.  Great guy but man... he needs to let someone else keep up with ordering before a mom or dad goes nuclear on him.  Daniel tried to push that agenda and so did I.  We can't have that happen again.  There is a lot of time, stress, and money tied up in this operation!  At least they apologized.  Small recompense for the stress :). I've never been so happy to see condiment cups in my life! (Daniel said this to me when I texted him a photo of two ziploc bags full of them!)

But as always... God makes it happen.  It was hard to have no backup plan, no way to solve the problem.  That's torture for engineers!  :). But you have to let go.

Christmas and New Years were wonderful with family and friends.  It was neat to see how many folks kept p in mind and asked questions to keep him safe.  We had a very proud moment overhearing him tell on of our dear friends "you have to check the label," when asking for a snack.  And it's cuter in 4 year old speak / lisp.

Other cool stuff:
-504 webinar Tuesday jan 14 sponsored by parents of kids with food allergies - hope we continue to learn good info tomorrow
-restaurant blog takes on food allergies from the other side - well done and helpful.
http://www.arlnow.com/2014/01/09/restaurant-talk-dealing-with-food-allergies/
-used the heck out of the allergy eats app while traveling.  As the database grows it gets better but some places (Disney) were great!  http://www.allergyeats.com/disney/.  The mobile app didn't seem to work for Disney but the web page worked.

Happy new year!
The Walton crew

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

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.