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Friday, January 12, 2007

Is Allergy Blogging Bad?

I received a very interesting and thought-provoking email from a medical doctor today. It sparked some excellent conversation in the NoPeanuts household.

(Note: the original text has been modified as I included portions of the email from the doctor that he subsequently felt I should not have posted. I have removed the doctor's name and portions of the text at his request.)

I had emailed the 'Doctor' to discuss the increasing prevalence of peanut allergy. He responded by questioning whether I should be blogging at all and I wanted to use his point of view to open a discussion on this site.

Doctor:
Peanut allergy is the same as seafood allergy or milk allergy or an allergy to any food. ... Why put your daughter in a separate category, different from other children? I personally think it's bad, especially for your daughter. Nobody is doing it for other food allergies!

NoPeanuts:
This blog focuses on the journey that begins when any parent is blindsided by the discovery of an anaphylactic food allergy. I chose peanuts because that appears to have been the catalyst that brought us into the food allergy community. Before this happened, I was admittedly unaware and somewhat unconcerned. We may find out at the end of the month that our daughter is not even allergic to peanuts, but that would not lead to a name change of this site.

The underlying allergen, in this case peanuts, is actually irrelevant. 'NoPeanuts' is a symbol for any allergy that requires ongoing care and management. In the interest of full disclosure our daughter also appears to be anaphylactic to egg whites and has a strong contact allergy to dog saliva.

I contend that this is not bad for us or for our daughter. I am writing in the context of 'our reality' and that appears to first and foremost be peanut. I am not sure it is a fair characterization that by focusing on 'our reality' and 'our story' that I would be doing a disservice to other parents by not discussing all food allergies.

That being said, I will try to be as balanced as possible in my discussion of food allergies in general while staying true to the mission of chronicling our journey.

Doctor:
There are already good help organisations dealing with food allergies ... : Anaphylaxis Canada, the Canadian Allergy and Asthma Information, the Calgary Allergy Network, The Food allergy and anaphylaxis Network ... to name just a few. Your blog is not going to accomplish anymore than what's already there.

NoPeanuts:
I understand your point here but I have no illusions of grandeur that would lead me to think that I can replace or usurp these organizations. A blog is just the new 'community chat group'. Instead of engaging in the Peanut Allergy Cloud I could choose to sit in the basement of a parish hall and discuss our child's allergy with other parents. But don't you see that this is actually a higher risk proposition? I would have a smaller sample to draw from and would thus be at a greater risk of getting bad advice.

I urge you to think of the "Wisdom of Crowds" principle - global is, frankly, better. I am simply choosing to engage in an online global discussion group where I am somewhat of a moderator. I also intend to volunteer with one of the organizations above and I am in the process of researching that. I would urge people that do find this blog useful to post comments (and conversely those that agree with the Doctor should post as well).

Doctor:
You, as a parent, are reacting like many others and starting another 'help' organization. Is the same thing happening with parents of children allergic to other foods? I think there are already too many parents of peanut allergic children who have either started a personal site (or) written books on the subject, unfortunately not without some errors or exagerations ... Re-inventing the wheel? Another form of sensationalizing?

NoPeanuts:
I concur that it would be irresponsible to write medical books purporting to be an expert, etc. but what's wrong with another 'help organization'? what's wrong with greater awareness? How is it a bad thing for parents to get involved and pro-actively manage their child's allergy? Is it wrong for Nadine O'Reilly to write a book for children that makes them aware of allergies? I say 'no'. Is it wrong for parents to start blogs and launch products that alert people to a child's food allergies? I say 'no'. There is absolutely nothing wrong with engaging people in a healthy and responsible discussion. Nothing on this site intends to be sensational. That being said, some aspects of a severe peanut allergy are obviously sensational so I am not sure how you avoid that when writing about it.

Doctor:
I don't intend to offend you and others reacting the same way, but I cannot see what you are doing as anything positive, other than just making a mountain out of a mole hill.

NoPeanuts:
I am not offended in the least. This prompted a great discussion in our home and you have opened my mind to the fact that I should be as balanced as possible, while staying true to the purpose of this blog which is to chronicle our journey. To that end I augmented my PeanutsNews feed on the home page with a Food Allergy news feed. I will also consider all allergies in our journey, part by default since our daughter has multiple allergies but also as a result of the similarities across all anaphylactic food allergies.

Again, I thank you for taking the time to engage in this discussion.

5 comments:

AllergyMoms said...

Food allergies have affected every aspect of our lives from friends, relatives, school, relocation decisions, how we travel, how we celebrate, etc.

We eat every meal at home, I bring food to every activity, visit or celebration. I read every label and still my little guy had to be transported in an ambulance to the ER after I injected him just this past October.

The stress on families after this type of event is very real.It may not be a mountain, but its not a molehill either.

Also, there are groups like ours
(allergymoms)who support caregivers dealing with any and all food allergies.

Infact, next month we are hosting an event to announce legislation here and our special guest is my friend Sara Shannon,(Sabrina Shannon's--Google her)who helped get Sabrina's Law passed in Ontario. Sara knows all too well that milk can be as dangerous as peanut.

Sometimes it does seem like peanuts get more recognition than they should as a danerous allergen.
I think its important to remember too that its not the food that is the problem. Sadly, its our childrens immune systems that need help.

Take care,

NoPeanuts said...

Thank you for sharing your story and your thoughts. For those not familiar with Sabrina's Law (as I was not), here is a summary (http://www.allergicliving.com/feature.asp?feature=17) .

The CBC tribute linked in the allergymoms comment is also nicely done. It seems to capture Sabrina's spirit - she certainly appears to have had a charming, vibrant personality. That was actually kind of hard for me to read as our daughter is a very similar spirit, though younger.

It is a fitting tribute to Sabrina that her family cared enough ot help get the bill passed into law.

The events of 2003 are very sad ... I think it is the randomness and suddenness that we am having a hard time coming to terms with.

The cause of the allergic reaction in this case was also symbolic since a similar reaction could have happened due to cross-contamination due by peanut oil, eggs, etc. and this shows the perils of a school cafeteria or a buffet.

Have things improved on the milk allergy front since the law was passed? I suspect that the challenge for non-peanut allergies is that schools often go 'peanut free' as it is relatively easy to do so, but what do schools do for other allergies?

Lots to learn as our daughter is also egg-white allergic.

The Cookbook Junkie said...

The doctor sounds a bit defensive. I like to get my information from as many sources as possible. Lord knows, the allergist didn't offer much advice besides 'avoid peanuts and here's a list of websites that might help you' when my son was diagnosed.

Kristin said...

First, I commend your grace and diplomacy in handling this discussion with the Doctor. I found his perspective to be, at the very least, insensitive. I have stewed about his comments for some time, but having read your June 5 post reporting the sad news about the young child's food allergy-related death in the UK (which left my heart aching), I felt the need to finally respond to this post.
I disagree with the doctor's comments that online food allergy discussion is a detriment to allergic families, or causes us to overreact. I have found most (if not all) of the information I have gained from other allergic families very beneficial in managing my own extremely allergic household. In fact, it was through these online communities that I first began to truly understand the serious nature of food allergies.
I disagree with the doctor's concerns about your focus on peanut allergy. I, too, have a child with multiple severe food allergies, and to be quite honest, I often rely on the public's familiarity with peanut allergy to drive home the point about how alert we must be around him. People don't always believe that a child will suffer anaphylaxis from garlic, but if I jump straight to what we call "The Peanut Point", people get it. And fast.
Finally, I strongly disagree with the doctor's comment about "reinventing the wheel". Yes, there are several food allergy organizations currently supporting, educating, and yes, saving the lives of allergic families everywhere. But to assume that broadening our commmunity (therefore empowering the village)is a waste of time is the point that truly saddens me. In their March 18, 2007 newsletter, the Mavens at AllergyMoms published an interview with Laura Marshak, PhD., who discussed the law of diminished returns with regard to learning about a child's medical condition and its effect on the family. This article really hit home for me, because I had recently begun to feel overwhelmed by the sheer amount of information out there. There literally is no way that one (or two, or ten) people can discover, process, report and pass on all of this information alone. You have hit the nail on the head when you say it takes a village...
I suppose there is one other point I'd like to make about the doctor's comments: They scared me. You discuss preparedness in the above mentioned June 5 post, and this is the crossroads of these two posts, in my opinion. After my son's first ER visit, our pediatrician patted my hand and told me to be more careful. He told me an EpiPen would be overreacting. We were so lucky, in so many ways: Our son tended to refuse certain foods, even as a baby. We lived very close to the hospital. My husband is a federal officer and first responder, and insisted we get an EpiPen. Doctor Golf Man was out of the office the day after The Egg Reaction, when we were seen instead by a delightful doctor who called me by name, made eye contact, and sent me (immediately) to an allergist. If I seem the least bit fired up, it is because there are so many variables, and each of us has gotten so lucky so many times, haven't we? It makes me sad that our gateway to better health and safer children may well lie in people such as this doctor, bent upon questioning the instincts of a village populated by some of the best parents ever to walk this earth.
Well, I suppose every village has its...doctor.

NoPeanuts said...

I appreciate your comment Kristin. For reasons you outlined we are in the process of finding a pediatrician and a new allergist for our daughter. At the risk of sound melodramatic we have had a few instances of sub-optimal medical care with each case putting our daughter's life at risk. I fully agree that we have all been lucky at one point or another. I cannot even imagine life without our daughter but it is scary how close we came to losing her on Boxing Day.