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

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.