I finally got my info from March's conference finished. Just a month late, but who's counting?

So Saturday was my trip to Baltimore for FAAN’s Food Allergy Conference. I was up bright and early at 4:30 am and left my house at 5:30. Thankfully, I was not alone for the drive and it was a traffic-free one. It was raining, but it was all pretty light so it did not hold us up very much.

The conference began at 8:30 and went until 4:45. We arrived at about 7:50 which gave us ample time to register and look at the information they had available. They had on display many of the informational pamphlets they sell through FAAN as well as their epi pen pouches and children’s books. The children’s books are teaching tools not only for the children with allergies, but also for friends, family and they even have a book for non-allergic siblings. The great part was they had the items there for purchase, so I was able to come home with a few things without paying any shipping costs. I purchased 3 pamphlets – one that is a parent’s guide to schools, a teacher’s guide and one on laws for schools – I also got two of their children’s books – Lenny the Lion learns to read labels (Lenny just so happens to be allergic to dairy) and Susie’s Sister has Food Allergies (obviously a book for Alysa). They also had a little stuffed Lenny and his t-shirt says, “Lenny the Lion allergic to milk”. That was a little splurge for Kayla and it made her day.

I have to say FAAN did an excellent job with the conference. They took a long day of 8 hours and made what could have been a very boring day very interesting with a lot of information and broke it up and changed it up so that it was anything but boring. There was a good mix of practical and factual information on diagnosing and voiding reactions as well as what studies are going on currently and what is on the horizon. Aside from the informational aspects they had a dietician speak with some tips on eating well in spite of food allergies as well as a person from the restaurant industry who helps her company focus on giving the food allergic a viable and safe option for enjoying a restaurant meal. There were also two fathers who spoke and gave some insight into the emotional aspects and coping mechanisms. Another great speaker was a 17 year old with a peanut and tree nut allergy. It was great to see a teenager who has lived with her allergy and all that she is involved in and accomplished – groups, clubs, travel and a fulfilling life. What parent doesn’t want that for their child?

The speakers and schedule was as follows:
- Dr. Robert Wood – Director of Allergy & Immunology at Johns Hopkins University – he is not only top in the field but a peanut allergy sufferer himself.
- Lori Enriquez – Registered Dietician
- Christopher Weiss – Director of Legislative and Regulatory Research at FAAN
- Tony Mussorfiti – a Firefighter and Emergency Responder and a father of a dairy allergic teen
- Chris Ryan – a father of a 19 year old who is allergic to eggs, tree nuts and shellfish
- Caitlin – 17 year old allergic to peanuts and tree nuts
- Victoria Griffith – Director of Quality Assurance at Clydes Restaurant Group

Schedule:

- What Everyone Should Know About Food Allergies – Dr. Wood
- Eating Well With Food Allergies – Lori Enriquez
- Anaphylaxis: How to Take Action – Dr. Wood
- Reactions in Schools – Lessons Learned – Christopher Weiss
- Emergency Preparedness for People With Food Allergies – Tony Mussorfiti
- From Crib to College with Food Allergies: A Father’s Perspective – Chris Ryan
- Food Allergies Don’t Define Me – Caitlin
- An Insider’s Views on Dining Out – Victoria Griffith
- Research Update – Dr. Wood
- Question & Answer – two sessions

And now for some things I got out of the meeting:

Christopher Weiss gave data on an informative study done in Massachusetts on epi pen usage and reactions in school. They have been collecting data in recent years and have published the data from a 2 year period in (I believe) 1994-1995 (my allergist currently has my pamphlets). They kept track of every time an epi pen was administered and where the reaction occurred. I believe it was very telling to see that only 8% of reactions occurred in the cafeteria. This is the place where you would think the highest risk would be with food everywhere. But even in the absence of food bans and the high presence of food, as long as proper procedures and controls are put into place, the risk can be very low. Kayla is a perfect example of this in her classroom at school. The highest rate of reactions occurred in the classroom at 46%. For any parent of a food allergic child, this will probably not come as a surprise. Food has become, for some ridiculous reason, an intrical part of the classroom and curriculum. Although I do not support overall food bans in schools, I do support allergen “bans” in classrooms (within reason and when warranted) or an overall food ban if the people in charge do not manage the food well. Again, as long as it is managed well, there is no need for too many food restrictions. But I ask you, what is the need and purpose for food in the classroom? Parties, if needed, can be held in the cafeteria.

One thing I really loved about the conference was it was not all technical. There was plenty of information and stats and facts. But they also added an emotional and coping aspect to it. They had two parents of food allergic children speak. One was the fireman who spoke of the extra importance of emergency preparedness when you have a food allergic child and he was also a father of a 19 year old with a food allergy. So he brought the perspective of a parent and that of one as an emergency responder to his talk which added more to what he had to say. The other father has a child in college as well. He spoke of all the issues we face as parents both the logistical ways to keep our kids safe as well as the emotional ups and downs. He added quite a bit of humor to his speech as well. Let’s face it, some of what we do is comical. Like feeding our children out of our purses when we are in a restaurant (if and when we go to a restaurant). When you’re in a room full of people who truly get it, it’s quite easy to let go of some of the tension and see the humor when their usually is none to be seen. You know there is no animosity or ignorance – just camaraderie and understanding. Nothing is intended as a way to make you feel bad or inadequate, but just looking at how we live daily. The good, the bad and the humorous. The teen, Caitlin was an excellent speaker. She is what I hope Kayla (and Alysa) grow up to be. She has taken charge of her life. She is very active in extra curricular activities and has even traveled (by 17) without her parents, which I’m sure was no easy thing for her parents to let her do. I give them so much credit as well. They have raised a young woman who is responsible for her own safety and has an excellent and bright outlook on her life and future. She doesn’t let her food allergy define her and she has surrounded herself with friends who care enough to keep her safe. She made the wonderful point that if someone won’t be good for her and help her or understand, she will not be friends with them. She knows who she can trust and who she can not.

Dr. Wood, whom I have heard so much about, was great. He was an excellent speaker and gave us a lot of information. It was pretty scary though to see some of the pictures he showed. On boy in particular was probably around 6 or 7 and was covered in head to toe hives because a classmate thought it would be funny to spit milk at him through a straw and he was contact-reactive. It really sent chills down my spine.

With two 45 minute question and answer periods, there was plenty of time to answer many questions. One person posed the question to Caitlin if she had ever been bullied. She said she has not, but one of the fathers said his son was once threatened with peanut butter in school. His way of dealing with it was to go the Principal and simply ask him what the school’s policy was on dealing with weapons in school. The incident was then dealt with to his satisfaction.

Dr. Wood was able to touch on some of the studies being done on food allergies. Many which we’ve heard about. Many of the studies are around vaccine development or desensitization. Some of these studies are ones he is directly involved in and really need a separate post since this one is already pretty long.

It was a great conference and I highly recommend it to anyone affected by food allergies, whether in their every day lives (self/parent/care giver) or if you have a friend, friend’s child, relative, child’s friend or even if you just want to learn more. As someone who is directly affected, I know our best defense is accurate education.