Thursday, March 20, 2014

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...

Monday, March 10, 2014

More hope for OIT in less time?

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.

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…