AAAAI and Social Media’s Response

This weekend was the annual meeting of the AAAAI in Los Angeles. I followed the meeting closely through both Twitter, Facebook, and when available a webinar as well as some contacts I had in the audience. For those of you who don’t know,  the AAAAI is the American Academy of Allergy and Immunology  the leading organization of allergists and immunologists. They study asthma,  immunology, and all diseases related to food allergies every single day. It is these doctors, these researchers, who will hopefully be on the front line of bringing us the cure and treatments that we have waited so long for, both as asthmatics and as mothers of children with food allergies. I wasn’t sure if I was going to do a wrap-up blog post based on this weekend workshops, however, as always there has to be negativity in the food allergy community.

 

I have to say I’ve watched closely. I’m actually appalled to yet again to see how some food allergy parents behave. I will admit the big workshop I was waiting for on Saturday, was the workshop on whether or not peanuts need to be banned in school or not. It was a pro or con debate.  Two doctors, two very well research-first, respected doctors, presented on this.  As expected, the Twitterverse and Facebook became front and center for the outreach of even discussing the matter. Unfortunately. As expected one cannot say something against a peanut ban without getting attacked.

 

When someone from the peanut board–who is attending AAAI–posted on Twitter that Dr. Fleischer said that doctors should rub peanut butter on the backs of patients to alleviate their anxieties, Twitter lit up! Parents have  been going crazy over this one tweet. Let me set the record straight. Mr. Parker–while he is employed by the peanut board–was repeating something as Dr. Fleischer said, and something that has already been studied.  (http://www.ncbi.nlm.nih.gov/m/pubmed/12847496/) This wasn’t some out of left field suggestion that this doctor made.  This was based on studies done in the past, and in fact, outside of the study a few doctors have made the recommendation to follow this practice to alleviate the fears and anxieties both parents and patients. They do it in a doctor’s office, not at someone’s home,  with just a slight chance of reaction since the data shows the majority of people would not react.  This was not a new concept, nor was it Mr. Parker’s idea. It was the doctors were was having a pro and con discussion about peanut-free schools, and in fact, in their discussion they show data that schools that were peanut-free had more incidences of epinephrine use than schools that were not peanut-free. I will attach the link to the study that was done in 2007 with obviously a very small number of people. However, it has been done in offices, and it’s actually a recommendation if someone is very nervous.

 

Some food allergy parents have expressed disapproval and disagreement with the results of   the LEAP Study and EAT study, both which encourage early introduction of allergenic foods. This is research! This is study based. This is not someone coming up with something off of the top of their head. How people would be against something scientifically proven, such as this, I have absolutely no idea. The only reason I can think of is that people may feel guilty about not feeding their children those allergens earlier. However, science is only as good as the information you have at the time.  We did not have the information at the time, and now we can see that there might be a benefit in early introduction of high risk foods in certain children. What’s wrong with that??

 

In addition, some  parents expressed disbelief and disagreement with the results of a study that showed how much peanut protein is present on different surfaces. In my opinion, this study proves a couple things. First, even when you say something is peanut-free, it’s not! Flights that did not serve peanuts had peanut residue, and restaurants that did not have peanuts in the eating area had peanuts on table surfaces. Peanuts, like dairy, and like all foods, are always going to be around. It’s common sense to wipe the tables, to wipe the airplane trays, and to wipe things down.  I don’t want germs ! Peanuts and other allergens are similar to germs; carry Wet ones with you and you’ll be fine. Wipes suffice for cleaning surfaces,  and hands too. I would do that even if I didn’t have food allergic kids. What the study did show me is that with all this peanut around, airborne inhalation and casual exposure is not a risk for most. This is good news! With all this peanut around, you would think people would be reacting every five seconds. And they’re not!

Yet Facebook groups are all ablaze and so are the Twitter comments: “how dare they come out and say that”and “oh my do you see how much protein on table”. Yet people with peanut allergies survived every single day with this all around them. Why is it that it’s always the negative posts? I felt they were trying to be positive and they were trying to show reactions have happened, but the reactions have  not been due to inhalation, but rather contact.   They touched the surface with the protein on it and then rubbed their eyes or put their hands in their mouth,which led to ingestion, according to this new study.

 

To see posts insulting the AAAI and doctors is unfathomable. These are the very people who we need to help us.  They are not making things up!  I’m not a medical doctor but if a medical doctor tells me XYZ is true based on scientific fact based on studies and data who am I to say they are wrong? Who am I to say that they’re hurting my cause ? Is it because they’re just not saying what I want them to say? Data and scientific evidence doesn’t support some commonly held fears of parents of children with food allergies. But isn’t that good actually? Do bad things still happen?  Are there outliers? Absolutely! Anything is possible, but for the majority of allergy sufferers, for the bulk of people with food allergies, there are facts and numbers, which should be a reassurance for us.
For everyone who is unhappy because of what was discussed and presented, perhaps maybe we shouldn’t do research anymore on “why allergies develop”maybe we shouldn’t do research because clearly every time a research study is presented, a portion of the food allergy community takes issue with it. Why should doctors continue to do research if this is how they are greeted within the community? I for one am very grateful for these doctors who are doing the research and I’m grateful for all the information coming out of these research papers; lots of exciting fascinating things are being done in the world of allergy and asthma. There is much to hope for, and I am glad, especially for my children.

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Lost Hope

About a month ago, I wanted to put both my boys on the list to enroll for the clinical trial of the milk patch. When I sent my boys’ names into the study, they replied to me telling me that my older son’s IGE level to milk was too low to be part of it.  I was shocked to learn in 2010, his milk IGE level was 6.5! I did not know he was ever that low. While he was in the baked milk study, his IGE level was rising yearly although he only at baked milk once, to the last one being 55. Given that it was unclear, they recommended that we retest him since it was such a long time. During this time, I was surprised he had such a low IGE number considering my other son has always been 100+.   To know that at one point my other son was 6.5, it was like nothing to me so we retested and during this time we were hopeful that perhaps his numbers did go down, and maybe he would not qualified to be in the milk patch trial. Although, deep down I knew this was not the case.  e were  recently in Florida, and my son had what appeared to be an airborne reaction from just being in a pizza place. He has also been wheezing and having asthma issues being around things with dairy so I suspected something was going on.

 

Yesterday, I got the blood test results and it was truly surprising to me! He is now a class six dairy allergy–100+ for his IGE level for dairy ,casein,and whey. Along with that, he recently has started complaining about steak bothering his tongue and his mouth starting to itch. Once in awhile, he would eat a hamburger and he would say it bothered his mouth. I decided that we should test him for a beef IGE also, considering my younger son use to be allergic to beef and there is a 15 to 20% crossover between dairy and beef allergies. To my surprise, my son is also allergic to beef. Now that makes dairy, fish, and beef at 12 years old.He has gained two new allergies.

 

I can’t help but feel disappointed and even feel that some of this is my fault.  His IGE level when he was younger was so low, at one point we weren’t so careful about minor cross-contamination or an accidental exposure. In recent years, we became much stricter about strict avoidance and only since then have his numbers gone higher. I can’t help but feel that if I hadn’t been so diligent about it, perhaps his numbers wouldn’t have climbed yearly.

I feel like I’m taking this harder than my other son’s allergies because my older son has always been my less allergic child, the one that I didn’t have to think everything through for; now they’re both equal.  They’re both the same.  They both have class six extreme dairy allergies and not only that, but he now is having airborne reactions to the dairy.
Between one son who is dairy, fish, beef allergic and the other allergic to dairy, sesame, and tree nuts,  I feel like I hate all food. I know I can’t. I know I should just say okay, move on. Not much has changed.  But I am faced with the reality neither of my boys are going to outgrow their dairy allergy. A food that is everywhere. It would have been nice to not have to worry. However, this is what it is, and we will just keep dealing with it.