Today we finally had our appointment with the allergist. It was kind of strange. We were virtually certain that our daughter is allergic to peanuts and egg whites, so going into the appointment were assuming that this would basically be an exercise in parental thoroughness with little new knowledge to be gained.
We started out by presenting our food allergy 'episodes' to the doctor in a random fashion. We of course started with the Boxing Day anaphylaxis scare, but could not say for sure that it was peanuts. There were numerous other suspected nut reactions as well as four egg white episodes, one of which presented swelling and shortness of breath and seemed to be a milder form of an anaphylactic reaction.
The doctor informed us that we would use a skin prick test to determine confirm these allergies and to determine whether other allergies were present.
After doing a considerable amount of research, I was aware of the fact that skin prick tests are far from 100% reliable and often are best used in order to confirm a suspected allergy vs being used as a means to identify allergies on an exploratory basis.
I also was aware that these tests only determine incidence of the allergy with no ability to gauge severity.
Given that we were quite certain of the egg white allergy and had reason to strongly suspect a peanut allergy, we were able to narrow the field. The allergist administered a skin test to seven sites. Four (wheat, corn, walnut, cow's milk) were done using an actual skin prick but the higher risk allergens (peanut, egg, flu vaccine) were applied topically without breaking the skin.
The result was not surprising. Our daughter developed hives to peanut and egg white despite not even having a break in the skin. All others came back negative.
The verdict was in: peanut and egg white are the culprits and based on our experience, we are fairly certain that both allergies cause anaphylaxis.
We were so sure that this would be the outcome of testing that our daughter has actually been wearing a Medic Alert bracelet for anaphylaxis to peanut and egg for three weeks now. I figured it was best to err on the side of safety despite knowing that in cases where parents suspect a food allergy only 39% of those allergies are confirmed via testing. Hmm, too bad we were not in the 61%.
Though the events of today were anti-climactic and confirmed what we already 'knew', it is definitely better to know. At least now we are sure what we are up against.
The challenge is that avoidance is your only real solution. There is no cure. There is nothing that this well-trained medical professional is able to do beyond telling us to avoid the allergens. No peanuts. No eggs. It must frustrate allergists to having nothing better to offer.
Though disappointing on one level to have the allergy confirmed, it is definitely better (and safer) to know. It is also promising to know that the majority of children will outgrow their egg allergy. As noted by Auckland Allergy Clinic, "about 80% of children with milk and egg allergy will outgrow their allergy by the age of five but only about 20% of peanut-allergic kids will outgrow their allergy." Maybe we'll be lucky and find ourselves within the 20% who outgrow peanuts and the 80% that outgrow eggs, though the apparent severity of her allergy does reduce the likelihood somewhat.
It was also a relief to learn that the food allergy is restricted to peanut and egg white. It is 'very rare' for people to have an allergy to more than one or two foods, so the negative result for the other allergens was comforting.
So there it is ... now we know.
NoPeanutsPlease is an independent blog.
All views, opinions and conclusions are solely those of the author and do not imply endorsement or recommendation by any other party.
Wednesday, January 31, 2007
Today we finally had our appointment with the allergist. It was kind of strange. We were virtually certain that our daughter is allergic to peanuts and egg whites, so going into the appointment were assuming that this would basically be an exercise in parental thoroughness with little new knowledge to be gained.
I read this story today ... very interesting. Katie Friedman is a high school senior who has made the prestigious list of 40 finalists for the Intel Science Talent Search after taking research into her (seemingly anaphylactic) peanut and sesame seed allergies into her own hands! Very cool. Kids do not try this at home =)
- - -
12 New Yorkers Among Finalists For Science Prize
New York Times
By: Elissa Gootman
(excerpt only ... full text via headline above)
As a first grader, Kathryn Blair Friedman was so allergic to wheat, peanuts and sesame that she had to settle for carrots whenever her schoolmates celebrated class birthdays with cupcakes.
Kathryn, who goes by Katie, now 18 and a high school senior, has parlayed those memories of confectionary deprivation into a science project that yesterday earned her a place among 40 finalists in the Intel Science Talent Search, the nation’s premier high school science contest.
The finalists, selected from 1,705 entrants, will be formally announced today. In March, they will travel to Washington, where they will compete for $530,000 in scholarships. The top winner will receive a $100,000 scholarship.
For the first time since the competition began in 1942, this year there was an equal number of female and male finalists, which the chairman of Intel, Craig R. Barrett, described in a statement as “heartening.”
Katie Friedman, a senior at the Chapin School on the Upper East Side, chose her topic after noticing how many people seemed to be allergic to both peanuts and sesame. She outgrew her peanut allergy but is still so allergic to sesame that she has not eaten any type of bagel in six or seven years.
She consulted with her allergist, who welcomed her to use his lab at Mount Sinai Hospital. Over the past year, Katie examined blood samples of three groups of people — those allergic only to peanuts, those allergic only to sesame, and those allergic to both — to determine the relationship between peanut and sesame allergies.
She identified two laboratory blood tests that she believed could accurately diagnose peanut allergies, potentially freeing patients from the need to confirm their allergy by eating peanuts in a doctor’s presence.
“It took a long time and was very uncomfortable,” Katie recalled of her own experience with that ordeal.
Katie, a tournament-level tennis player, plans to attend Williams College. She wants to be a doctor and may specialize in allergies, immunology or infectious diseases.
Tuesday, January 30, 2007
I read an interesting article today about how a parent lobby in Arizona is trying to establish strict and consistent guidelines for managing peanut allergy in state school districts. Though the overall goal is consistent with measures in place in several Canadian school districts, I think this might be an example (at the risk of being a naive outside observer) of an aggressive force meeting with an equally strong and opposite reaction.
The fact that the article deems this a case of parents being ready to 'wage war' is unfortunate , though the overall article is quite well written.
Am I naively optimistic to think that a campaign of education and 'gentle' negotiation needs to accompany this legislation? The legislation will ensure consistency but there needs to be a program wrapped around it to support the teachers and the schools - something similar to the excellent Safe4Kids program of Anaphylaxis Canada. Somehow this contentious debate is now proposed legislation without the agreement of all stakeholders - not to imply that would be easy or even possible.
The fact remains that new legislation asa result of parents winning a 'war' will do little to secure the buy-in of schools. It might actually result in non-peanut parents and teachers resenting the ruling which would be unfortunate.
I have emailed the author to ask if she knows the background - how did things get to this point? I am only going on what I read in one article and would happily stand corrected.
Article excerpt below ... full article here.
Food allergies no small potatoes to schools
East Valley Tribune.com
By Andrea Falkenhagen
A stuffy committee room at the State Capitol got a spark of life as its back rows filled with parents and toddlers. Among the black suits, leather folders and the buzzing of BlackBerries were sippy cups, gurgling babies and a lavender My Little Pony. These mothers were in it for the long haul, waiting to wage war over something they say threatens their children’s lives — peanuts.
“We hear about kids being chased with peanut butter sandwiches on the playground and teachers being inconsiderate to children who have life-threatening allergies,” said Chandler mom Jeannine Markandeya.
“We’re not talking about, (a child) gets a rash when she eats strawberries. We’re talking, if she eats the peanut, she’s dead.”
Markandeya is a founder of the Phoenix Allergy Network — a group of Valley parents lobbying in full force to get state lawmakers to take on the issue of how schools respond to food allergies in children.
A bill sponsored by Rep. Warde Nichols, R-Chandler, would require school districts and charter schools to develop guidelines for managing severe food allergies, as well as training for teachers and principals to administer through a needle a small shot of epinephrine that can reverse a life-threatening reaction. Districts that do not comply could see up to 10 percent of their state funding withheld.
Several high-profile education groups oppose the measure, saying it carries too many obligations for school staff.
Sunday, January 28, 2007
In prior posts I have stressed that it is important for peanut parents to engage others in the 'Village' instead of being aggressive and driving them away. Well, it works. A parent that we know was recently at the community centre with her child. Her child wanted a snack so she took him to the vending machine and bought a bag of nuts. They then sat by the pool and he was eating his nuts which of course for a toddler means that nuts and nutty-hands were everywhere.
It dawned on this parent that should our daughter come in behind her son that could result in a very bad situation, with the potential for anaphylaxis should our daughter come into contact with peanut protein.
She went to the office of the community centre and suggested (strongly) that they remove nuts from the vending machine due to the risk that this posed.
I agree that in a place frequented by young children it perhaps makes sense to promote better awareness of peanut risks for young, allergic children.
I thought this was a great example of other members of the Village being made aware and engaged in helping. It truly Takes a Village to Avoid A Peanut!
The It Takes A Village series is focused on how people in the community are involved in the support of allergic children, especially those with anaphylaxis. This article is an interview with a school psychologist named Nadine O'Reilly, M.A., C.S.P. Nadine is a practicing school psychologist and also holds the position of Coordinator of Special Services within a large public school district in northern New Jersey (complete bio).
Nadine spent years counseling parents on how to manage their child's allergy. Though she empathized with the parents of food allergic children, it is difficult if not impossible to truly identify with what parents go through unless you are the parent of a food allergic child yourself.
Well that's exactly what happened.
A few years ago she discovered that her son has anaphylaxis to peanuts. Unfortunately in order to discover the anaphylaxis she also had to go through an experience as frightening as our Boxing Day emergency. She notes below that it was very strange when the tables were turned and all of a sudden she had to put her own advice into action. Here is an excerpt from her homepage:
"When I found out that my son had a peanut allergy, I thought it was the end of the world. My imagination went into overdrive: A life filled with fear; no more invitations to birthday parties for my precious son; no more dining out for my family; sneers from others to the words “peanut allergy…” Every bad thing I could think of that would be associated to my son being the “peanut allergy kid” came to my mind."
I was struck by this. Despite her years of education and experience, nothing prepared Nadine for the experience of dealing with anaphylaxis in her own child. I suspect that this experience has made Nadine even stronger and more empathetic in her role as school psychologist.
The peanut section of Nadine's website displays an impressive combination of first-hand parental perspective and objective clinical advice. The site's heightened level of humanity makes it even more approachable for parents. I would encourage the parents of a food allergic child to read the relevant section of her site as she covers much more than just peanuts.
Here is the interview with NoPeanuts:
The initial shock of an anaphylactic episode is incredible. The realization that your child has a life-threatening allergy is part frightening, part surreal and part heart-breaking. In our case we coped by meeting it head on and doing as much research as we could. This blog is also a great outlet. What is your advice to parents that might be within 24 hours of first discovering such a severe allergy in their loved one?
Wow, I'd like to say something "clinically correct," but what instinctively comes to mind is "Hug your child tightly and breathe..." Seriously, give thanks your child is alive and pat yourself strongly on the back for getting through the experience in one piece. 24 hours from the episode isn't even going to take you into the Specialist's office, so refrain from doing any serious research until a Board-certified Allergist has clearly defined your child's condition and pointed you in the right direction. And definitely do begin educating your child about what happened in the most age-appropriate manner possible (begin by congratulating her on how well she handled herself).
Today we had our first case of having to inform an Instructor that our child was severely allergic to peanuts. What is your advice to parents that have to do this for the first time, given that it's quite uncomfortable to ask for a 'peanut ban'?
As a school psychologist, I've been trained to hold parent meetings that will inevitably touch upon controversial information. What I wasn't prepared for was to have the tables turned and be the parent advocating for her child! I have a deep respect for parent advocates now; it's not easy.
Go to chat forums and ask parents in similar situations how they've dealt with their first notification meetings, and ask for specific statements that were made that others might be able to recall. Then, knowing how predictable humans are ;), practice what you'll say when you're faced with similar scenarios. But please, don't go in expecting a confrontation unless you really want one - defensiveness will get you nowhere. And you'll be amazed
at how cooperative some districts can be. Food allergies are far more prevalent of late. It's unlikely you'll have to pave new ground.
Role-playing is an awesome tool. Practice what you'll say ahead of time while looking into a mirror and speaking aloud. Now, I know that sounds ridiculous, but consider how we really don't see ourselves the way in which others see us. Know yourself before you go into a potentially stressful situation.
How common is it for parents of other children to exclude children with allergies from birthday parties, etc? How should parents deal with that scenario?
I wish I had an answer for that one. I know my son's been excluded from one, and it broke my heart. Depending on your child's age, you might want to come up with creative ways to make them feel better. I'm not an advocate of fibbing, but I know that if I had taken a "truth only" approach the day my son felt left out, I would have really hurt and confused him more (concepts such as "ignorance" might be above a toddler). My advice would be to send out a friendly memo to parents at the beginning of the school year (or as soon as you learn of the allergy). Introduce yourself and your child, and provide a phone number so others can contact you with any questions. In that memo, mention that you're reaching out with this information so that when birthday parties/play dates come around, others know that you are there to help and you'll be happy to provide your son/daughter with his/her own food, and that you'll be happy to chaperon. Who can resist such an offer?
Obviously we are still fairly new to this ourselves but what is your advice to us as parents who are but three weeks into dealing with
this allergy and still do not officially know what we are up against?
I remember the first week my son went back to school: I pictured him in a minefield within which he'd dodge classmate after classmate with peanut-butter-smudged hands reaching out to hug him. :) But reality is, it's not as scary as it's made out to be. Frankly, I feel for parents of children with milk, egg, and/or insect allergies! And my hat's off to parents of children with multiple food allergies. Wow.
I guess the key is in teaching your child to self-advocate. If your daughter knows not to touch anyone else's food, and to eat from her own plate (I'm quoting from "Peter" here ;), as well as how to recognize symptoms of an allergic reaction, she'll be absolutely fine. It's going to be just fine, you'll see.
What are your thoughts on having an anonymous blog versus us showing our names? You have names and photos of your (beautiful) son on your site which makes it more personal. Have you encountered any issues or developed any concerns with having that personal information out there?
Not an unreasonable concern at all! Funny...with me being a psychologist, and my husband a police officer, you'd think we'd be extra paranoid! But I think a simple Google search will bring up a newspaper article with images of us anyway, so there's no fighting the Internet. Even if I wanted anonymity, I couldn't have it after publishing a children's book on food allergies. It's a very personal choice, I guess.
Tuesday, January 16, 2007
I posted last week about the first time we had to bring our daughter to her music and movement class. Since that class I have though long and hard about whether it was we, and not the other parents, that actually generated the surprising reaction. Did we cause the looks of indifference to the fact that our daughter had anaphylaxis?
Today I brought my daughter to another class. She is in two similar classes each week as she enjoys them immensely. As this was a different instructor and a different set of parents I had the opportunity to try a softer positioning with no supplemental emphasis from us.
I made sure that I calmly and factually outlined that our daughter had an anaphylactic peanut allergy, but we did have an Epi-Pen and as our nanny would be in the class there should be nothing to worry about. That being said I did ask if she could let the other parents know at the beginning of the class.
It worked wonderfully! The other parents responded in a very understanding fashion and one mother even noted that we should keep our daughter away from her son to be extra careful as he had just eaten a peanut butter sandwich on his way in.
It was great to see that the softer communication style produced a much more positive reaction from the other parents.
I think that this clearly validates last night's post about how 'peanut parents' should communicate the allergy to other parents and 'villagers'.
Monday, January 15, 2007
Though my initial reaction to the events of Boxing Day were to eradicate peanuts from the face of the earth, taking the time to research, discuss and blog about peanut allergy in children has led to a more logic and sensible state.
One seemingly sage piece of advice I read was that the food allergy is our responsibility to deal with as parents and we cannot assume that others will automatically go out of their way to help. While that may be true, there are many examples of where people do go the extra mile to accommodate an anaphylactic child and their food allergy - just read these at Anaphylaxis Canada.
People do want to help but your approach is important. To effectively enlist the support of other parents, a peanut parent must avoid being overbearing and overly sensational.
An example of what NOT to do comes from Straus News (Oct-19-06). With the best of intentions (I'm sure) a 'peanut mom' tried the full frontal assault tactic and was met with significant opposition. The strategy included sending an email to parents stating that "a peanut awareness group was being formed and that petitions were ready to be signed to ban all peanuts in the school". This was met with mixed response and one non-peanut mother took issue with the ultimatum and countered “to eliminate even 99% of the products that will trigger an allergy attack will be quite time consuming. And more likely not even possible. There is not any possible way that you will be able to discover everything with a peanut or nut oil. Many people, including myself, wear lotions everyday with these products.”
Neither side is making educated arguments and instead are using rhetoric. It does not take a full peanut ban to avoid an anaphylactic reaction and, correct me if I am wrong, but I have not read anything that would suggest that skin contact with a lotion containing peanut as perhaps ingredient 15 out of 20 is a material threat for anaphylaxis.Child Food Allergy (now linked from the NoPeanuts homepage) is a blog that focuses on parenting children with food allergies. There was a post on Jan-14 directed at 'peanut parents' who are so aggressive in their pursuit of peanut free schools that they alienate themselves and lose the support of other parents in the 'village'. The post instead recommends a more balanced approach ...
"make sure any notes sent home to parents asking them not to send food containing peanuts is written with a concerned but not panicked tone. People don't really go out of their way to help "that mom." And please show sincere appreciation to teachers and the school's staff for their efforts. They are your eyes and ears when you can't be there. Your child's safety at school depends on them."
Seems reasonable. Provide information, support and encouragement and then thank people for their help afterward. It would likely garner more support than the petitition / ban model. FAAN in particular has a fantastic section on their site for dealing with food allergy in schools.
Peanut parents have to remember that over 90% of the population is not dealing with anaphylaxis. As somebody that did not have anaphylaxis in his life a month ago, (and would often cover the floor of sporting venues with peanut shells), I totally understand the view of the 'other side'. Peanut allergy is just not top of mind for most people.
Rolski, our UK author friend, blogged on peanuts again and noted that "if we ban everything that's 'bad' for us, it's not long before we'll all be living on nothing but 'regulation' gruel and water. No, parents with peanut allergies can't expect much help from us regular folk."
Like it or not, that seems to be how much of the population thinks. Rolski adds (kindly): "it's up to websites and blogs like Nopeanutsplease to educate the rest of us about the challenges they face and hopefully, we'll be understanding and cooperative as best we can."
I hope that the It Takes A Village series leads to a more balanced discussion around peanut allergies. Peanut parents will build a 'bigger village' of supporters if they take the time to consider the feelings and concerns of others before bringing in the heavy artillery.
The first installment featured Teachers ... more will follow.
Saturday, January 13, 2007
This week on NoPeanuts we have had discussion on whether the food allergy focus should be on peanuts. There was debate about whether I should focus on peanuts so much or instead balance my comments and articles across all forms of food allergy. Though I am certainly empathetic to all food allergies, especially when we think of stories such as that of Sabrina Shannon, the NoPeanuts family is primarily concerned with peanut allergy right now as that is what triggered the events of Boxing Day.
As part of our journey I have been extensively reading, pondering and discussing the ongoing research into the causes and possible treatments of peanut allergy anaphylaxis. As I get deeper in to the research I will certainly pass along what I learn on other food allergies - remember, we are also challenged with anaphylaxis to uncooked egg-white.
Though somewhat dated, I think it is worth highlighting a great article in the Wall Street Journal in October 2006 titled "Researchers Uncertain How To Tame Peanut Allergy" by Jame Zhang. The article covers many possible solutions but three jumped out as being of particular interest:
- Drug Development
- Genetically Modified Peanuts
In the quoted, highlighted text below I have taken excerpts the WSJ article:
"An approved asthma drug, Xolair, may be useful in treating peanut and other food allergies; injected into patients, it would reduce certain antibodies that are thought to cause anaphylactic food allergy. Last year, though, clinical trials came to a halt after two children, who had been given peanut protein in a screening to gauge the severity of their allergy, experienced anaphylactic reactions. The drug's makers — Genentech, Novartis and Tanox — are working with the Food and Drug Administration to design a new trial, Genentech says."
This drug has actually had a controversial history. It 'took over' from TNX-901 after a legal battle between multiple drug development partners - as documented by Time in 2003. Given that it is one of the only drugs I am aware of geared toward peanut allergy it will be interesting to see if anything actually transpires. Based on the halting of the clinical trial (see above) and the fact that Xolair did not begin life as a peanut allergy drug in the first place, I would not hold out on waiting for this drug to hit a pharmacy near you. It is also worth noting that, per the Time article, the annual cost of treatment would be a whopping $10,000!
So if there is not a drug treatment available (not that I would necessarily take that option for our daughter anyway), what about the possibility of a vaccination or immunotherapy? The research actually seems quite promising in this area:
Immunotheraphy / Vaccination:
Two researchers — Wesley Burks, chief of pediatric allergy and immunology at Duke University Medical Center, and Hugh Sampson, his counterpart at New York's Mount Sinai School of Medicine — are trying to create a vaccine. They have slightly modified the three peanut proteins responsible for most reactions so they don't trigger such strong reactions from human mast cells. By administering the modified proteins to subjects in slowly increasing doses, they hope to condition their immune systems to tolerate more. They have tested the therapy on mice and plan to start on humans in a year or so.
Another experimental therapy aims to reduce the severity of reactions. Burks's team administers powdered or liquid peanut proteins to patients in incrementally increasing doses, starting with 0.001 peanut the first day, to one whole peanut six months later. They hope one day to develop a drug or a physician-administered therapy. In a trial completed on eight patients, Burks says the subjects tolerated 13 peanuts before experiencing a reaction — enough, in theory, to save an allergic child's life in case of accidental ingestion."
I actually have communication into Dr. Burks and I will let you know if I learn more from him on this research as it seems to be more within reach than a $10,000 a year unproven prescription drug. The difference between 0.1mg of peanut protein, the allergen threshold for those with a severe peanut allergy, and 13 peanuts could the difference between life and death. It is reasonable to expect accidental exposure to 1mg of peanut protein or even a whole peanut, but I suspect it would be a lot less likely to be accidentally exposed to 13 peanuts before you realized it was happening!
Genetically Modified Peanuts:
Peanut interests have helped to fund the work of Peggy Ozias-Akins, a horticulture professor at the University of Georgia, Tifton. She wants to develop a plant whose peanuts are free of the three major protein allergens.
Screening the genetic structure of peanuts harvested on an experimental farm, Ozias-Akins is searching for ones with a defunct Ara h 2 gene, which is responsible for a protein that causes reactions in about 90 percent of patients with peanut allergy. When she finds plants with the defunct gene, she'll use them in a traditional breeding program to produce less-allergenic plants. She expects it will take at least three years to breed the plants and test them in animals.
Ozias-Akins's team also is trying to disable the Ara h 2 gene by modifying the peanut plant's genetic structure. She shoots cloned copies of the gene into a peanut, which can create a disabled gene that suppresses the function of the original one. Her team is growing plants with a disabled Ara h 2 gene in the greenhouse and testing whether the peanuts contain the allergy-causing protein.
Success is a long way off. Without the protein, other genes may compensate for its loss, making the new plants more, not less, allergenic than regular peanuts. As a result, any new genetically modified food product would have to go through animal testing and human clinical trials.
And even if Ozias-Akins gets there, it isn't clear that the world will embrace the results of her work. Says Duke's Burks, "If you take out all those proteins that cause allergic reactions to the peanut, then you no longer have a peanut."
While this is interesting, I will let you eat the first bag of genetically modified peanuts and wait to see what happens! I also am not sure that people need to eat peanuts this badly. While peanuts are a healthy source of protein, if you are training your daughter to avoid peanuts then you run the risk of confusing her by saying these modified peanuts (which probably look identical to allergen-laden peanuts) are fine while these other peanuts are bad. This is a similar line of caution that the former head of Anaphylaxis Canada expressed in reaction to the release of the peanut butter replacement, PeaButter. Seems to me that there is no market for this product unless allergenic peanuts are banned and we all eat the genetically modified variety.
While these projects are very interesting, what strikes me is the seemingly small aggregate pool of research on peanut allergy and food allergy as a whole. A 2002 study found only 33 food allergy research projects in the U.S. and less than $7M in total annual funding. I suspect that there is more happening now and I am trying to get better data to share with you. According to the WSJ article above, 'peanuts farmers and food processors have given $5.6M over the past decade to eight scientists, mainly for peanut-allergy work'.
I think that this area of research is fascinating. Parents of anaphylactic children should stay current on developments from these and other researchers. While sites and blogs (such as NoPeanuts) will have commentary and information, make sure you also ask your allergist or physician as they may have information that is even more current.
I am going to start a new series of articles outline the impact that food allergies have on various people in the community. "It Takes A Village" will provide stories and thoughts from others in the community that may not have an allergic child but at times are responsible for the care of children that do have severe allergies.
It is important that parents of allergic children consider the feelings and apprehensions of others during the process of educating and communicating their child's allergy condition to caregivers, other parents, teachers, etc. To do that it is important to understand their perspective.
As you know many schools have instituted policies and procedures to prevent and address allergic children's challenges. The first instance of "It Takes A Village" is focused on Teachers.
- - -
It Takes A Village - a Teacher's Perspective
Source: A Primary & Elementary School Teacher's First Hand Account
I was teaching over a span of 25 years in primary and elementary schools. Every September, forms were sent home so parents could give an update on each child’s status regarding address, emergency contacts, medical issues, etc. I made a copy of each completed form for future reference and sent the originals to the office to be placed in the students’ files.
Over my first fifteen years of teaching, I paid particular attention to health issues such as cystic fibrosis, asthma, and diabetes. I always made note of the many allergies that were listed on the forms but I didn’t have any students with severe allergies. At least, I don’t think I did. No parent ever came forward to tell me that an allergy was severe. There was no mention at staff meetings that we had a child in our school with a severe allergy.
Within the past ten years, however, I have seen an increase in the number of children who have severe allergies. It is now the responsibility of each teacher to become familiar with all children in the school who have a severe allergy. Early in the school year, the staff meets with the school nurse who demonstrates the proper procedure for using the Epi-Pen. She informs us which children in the school have severe allergies. Posters and pertinent information about each of these children is posted in the staff room.
We have had several children in our schools with severe allergies to peanuts. Our school does not have a school-wide ban on food containing peanuts. There is a ban only in the specific classroom of the student affected by the allergy. In consultation with the parents, the school administrator may also ban ice-cream in these classrooms.
One year, when I was teaching kindergarten, I had a child who had a severe allergy to fish. I met with the mother and she told me what procedures to follow if an allergic attack occurred. She told me to administer benedryl at the first sign of watery eyes and to take the child to the hospital if I used the Epi-Pen. I was to call her at work immediately and she would meet us at the hospital. There was a “No Fish” policy in our school and I have to admit that sometimes there were slips where someone brought a tuna fish sandwich or heated up fish in the microwave in the school cafeteria.
This was the first time I had a child in my classroom with a severe allergy. It made me nervous. I kept a close eye on the little boy all the time. I talked about him in the staffroom and I let every staff member know where I kept the Epi-Pen. On one occasion, the child was completing a cutting activity when I noticed that his eyes were watery. He told me that he poked his eye with his scissors but I was too afraid to take his word for it. I immediately administered the benedryl and reported it to the office. Mom was called and arrived in no time. It was a false alarm but a nice trial run for me in the meantime. The child never had an allergic reaction in the classroom and I never ever had to use the Epi-pen.
I feel that it is up to the administrator of the school as well as the visiting public nurse to educate teachers and other parents about allergies. When the administrators take the situation serious, teachers will also take it serious. You can be sure that the children’s classroom teacher and the co workers in adjacent classrooms are well aware of the allergy situation. But does every teacher in the school take time to meet and greet these children and familiarize themselves with the situation? At some point, every teacher in the school will be doing lunch duty and so every one of them has to take some responsibility. In all my years teaching, I do not recall one incident where a child had a severe allergic reaction and the Epi-Pen had to be used. But we must realize that one incident is too many.
Friday, January 12, 2007
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.
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!
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.
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.
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).
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?
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.
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.
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.
Thursday, January 11, 2007
So today we had another of many firsts to come in dealing with our suspected peanut allergy. Our daughter went to 'Orff Tumblers', a class that focuses on music and movement ... two of our daughters favourite things!
The difference today was that my wife was a 'Peanut Parent' for the first time in a group setting. Being a Peanut Parent of course entails a whole host of standard precautions including making sure your child is wearing her Medic Alert bracelet, carrying two Epi-Pens and bringing along snacks from home.
The newest precaution is having to 'talk to the teacher' about our peanut allergy.
My wife felt a little uncomfortable heading into the community centre, fearing a negative reaction from the instructor. She did not want to be perceived as being the ridiculous, overcautious parent and she did not want to face condescension from the other parents at a supposed inconvenience of their peanut-loving children. My wife was also concerned over our daughter standing out and being some sort of pariah.
This is a walk that we will surely become accustomed to. I have not done it yet and I have to admit it's not something I am looking forward to. Though nobody wants to be 'that parent', we have no choice. The safety of our daughter has to trump our personal insecurity.
I have a theory (based on parental intuition) that the way our daughter manages her allergy throughout her life will largely be based on her observations of how we handle it now. We must be confident, consistent, logical and thorough. We will often have to maintain an even keel despite the fact that at times we are truly afraid.
Managing a peanut allergy is an education process, both for yourself and for others. Parents must have the confidence and strength of character to assume the role of teacher whenever it is required. Not doing so will likely put your child at risk.
So what happened with the instructor today you ask?
Thankfully the instructor demonstrated an understand of the situation, made the announcement to the class and ensured that our daughter had a great time, without singling her out. Our daughter enjoyed the class immensely and we felt it was an initial Peanut Parent success. She has no idea that she is any different from the other kids and we hope to keep things that way.
The one wrinkle in the day was the response of the other parents to the instructor's announcement that our daughter had a peanut allergy and it would be best for any peanut snacks to be consumed outside. Our nanny was also in attendance and she clarified for the parents that the peanut allergy was severe and that an anaphylactic episode could be triggered by a even minimal exposure to peanut ergo it is best to leave peanut treats at home.
The response from the parents was interesting, or should I say their lack of response was interesting? None of the parents said a single word and many wore expressions that ranged from indifference to annoyance. I suspect this is going to be a common response. I suspect that we will frequently encounter resistance, a lack of understanding, a lack of knowledge and perhaps even an air of indifference when we explain to people that our daughter has a peanut allergy and that we need their help. It is going to be important to be patient and strong in those situations.
Though we need to ensure that we do not scare or shock the other parents, it is important that they understand the risk that they could place our daughter in by introducing peanuts into the room. It is not our goal to make them care, just to ensure that they are aware of the allergy.
Next week we are going to bring peanut-free treats for everybody! Our daughter made many new friends today and we want to make sure that she is not seen as the 'Snack Monster' for any of the other kids who enjoy their peanut-filled snacks.
Of course the irony in all of this, is that based on my research these parents should probably not be introducing peanuts to their children at this age anyway, so an announcement should not really be required.
Tuesday, January 9, 2007
They're out there. I suspect (er, hope) that this UK blog's author was writing at least 40% in jest. This guy is the adult version of the schoolyard bully who chases your child around during recess with a peanut for fun.
Though the author acknowledges that peanut allergies are no laughing matter, I do find myself somewhat appalled. I suspect that he would not find it as humourous if he witnessed an anaphylactic attack first hand.
While this particular blog is simply a writer trying to drum up interest using a shock technique, there are certainly people out there that are truly frustrated with and intolerant of the "Gooberically-Challenged".
I have contacted the blogs author and will post in future based on his response (if any).
So we had another scare this week.
Not nearly the same level of reaction as the Boxing Day episode but after a week of total vigilance on ingredients, labels, avoiding nuts, etc. I goofed.
Our daughter gets a treat if she doesn't throw food on the floor during dinner ... she's young remember! This week she has been great and on Saturday I gave her Haagen Dazs vanilla ice cream to celebrate.
She immediately broke out into a rash on her face and started to get a few hives. My wife rushed to the medicine cabinet for the Epi-Pen but it seemed that our daughter was in great spirits and the rash was not progressing.
We opted for the Benedryl vs the Epi-Pen and this seemed to do the trick.
The scary thing about the severity of these allergies is that you have to be 100% vigilant. The further challenge is that everybody who is going to care for your child also has to be 100%. You cannot let your guard down for a minute.
In this case our daughter had a reaction to 'liquid egg yolk' ... (at least we think that's what it was). There was the standard 'may have come in contact with peanuts' warning on the label but chances are it was the egg yolk. Interestingly, our daughter is only allergic to egg whites so I am guessing that because the raw yolk would have contacted egg whites the liquid egg yolk is our culprit
Try your best to avoid offending foods but always be prepared for an emergency.
My preliminary research indicates that it's common for children with these allergies to have multiple anaphylactic episodes before they are even 5 years old.
Tuesday, January 2, 2007
So what has happened in a week?
I have noticed that my mindset is beginning to shift. I am more cognizant of ‘danger foods’, I have removed offending food products from our home and I have finally started to remember to carry the Epi-Pen when we go out. It takes time to learn new habits cold turkey!
I have also noticed a profound change in the way I feel. Perhaps this is akin to the grieving cycle? I will dig into this a little further as there is quite a volume of content out there on the psychological and quality of life impact of a peanut allergy. While I am not grieving per se, I have definitely felt some sort of psychological process at work.
The first step was just coming to terms with such an earth-shattering event, and accepting the lifelong consequences of an allergy that has been referred to as a ‘disease’. As a realist by nature, I have been able to quickly get past the fact that my daughter has this allergy. I spent much of the past week talking to friends and doing research but I have not caught myself asking ‘is this really happening?’ I just wanted to build a base of information so that I know what I am up against.
Now that I have done enough research to have familiarity with peanut allergies I find that I am developing a pretty healthy fear … alas that is the downside of being a realist – you dig out all the facts, not just the good ones!
Though we’ll be sure to shelter our daughter from our fears and concerns to a limited extent, I dread that day when she is old enough to develop fears and anxieties of her own.
So, why am I afraid?
1. Peanuts are almost ubiquitous in our food supply. Complete avoidance is not realistic.
2. Based on my research, it appears to be a virtual certainty that by the time our daughter is 8 years old she will have had multiple additional anaphylactic episodes.
3. For at least the next few years our daughter will not be cognizant of her allergy and will certainly not be able to articulate it to others. Give her a peanut butter cookie and she’d eat it.
4. Based on my research, it appears to be a common theme that such a severe reaction to peanuts is not something a child is likely to grow out of.
These are scary facts when considered in aggregate. We have a close friend who has a severe peanut allergy. The major difference between he and a child is that he is aware of his condition. Further, in most emergency situations he would have time to self-inject with an Epi-pen and call his own ambulance. Our daughter is not even aware that she has an allergy.
Further anxiety stems from the fact that we are still not 100% sure that we even have a peanut allergy on our hands. While we do have a reasonable basis for this conclusion it will not be confirmed until the end of January when we meet the allergist. At this point we are on pins and needles in case it was not actually a peanut that did this. All we can do is be vigilant on avoiding foods of concern and wait for the official verdict later this month.