August 28, 2008

Food Allergies in Jr. High

I've spent more than 10 years teaching my daughter about her food allergies. I always tell people she is very responsible about what she eats. She carries snacks with her knowing that she may end up some place hungry without a safe food option. I've taught her how to teach others about her food allergies. I've tried to model being safe but not over the top. So when it was time to go to Jr. High, I was pleased but not surprised that my daughter wanted to take matters into her own hands.

Before school started, I went with her to meet the school nurse. We did our usual talk about food allergies and Epi-Pens. Then my daughter suggested that she write a letter to her teachers to introduce herself. With so many new kids entering the school, how would her teachers remember her? How would they know that she has food allergies? So my daughter typed a letter, including a current picture of herself. Then on the first day of school, she introduced herself and handed each teacher a letter. The teachers gave positive feedback. She will still tell her friends, both old and new, about her food allergies and that she always has an Epi-Pen with her. But I still need an adult to be aware of the situation. For my daughter, this is another step in the direction of complete independence with managing her food allergies. For me, it's a time to see some pay off of all of our hard work over the years.

Below is the letter my daughter wrote. Feel free to use it as is, use parts of it, or just give the idea to your child and let them create their own. As FAAN always says, we're all in this together!

Dear Teachers,

My name is Elizabeth and I am allergic to nuts. If I eat anything with peanuts or nut products in it, my throat could close and I could stop breathing. I know this sounds serious, but I'm extremely responsible and I carry medicine around with me everywhere. The medicine is called epinephrine, or an Epi-Pen. To administer the medication, you must remove the gray cap, inject it into my thigh, and then hold it in for ten seconds. The Epi-Pen will start to take effect instantly. After you give me the Epi-Pen, call 911. If you forget these instructions, they are on the Epi-Pen.

All of my friends are aware of my allergy, and I carry an Epi-Pen in my backpack at all times. There is also one in the health office. Thank you for helping to keep me safe!

Sincerely,
Elizabeth

Posted by Ann Marie at 1:35 PM | Comments (0)

August 1, 2008

Jr. High and Letting Go

It’s interesting how children grow up and parents learn to let go. I’m sure most parents have strong feelings on this topic. My most recent thoughts revolve around food allergies and Jr. High. Have you done this yet? Or does it seem so far off in the future that you tell your brain to conserve its energy and you’ll worry about those thoughts when the time comes? Well, my time caught up with me…

My oldest is starting Jr. High next month, which means a new school, new staff and added independence. Gone are the days of meeting with the teacher and nurse before the school year begins to create a safe environment; a place where my child can learn and grow and have fun without thinking too much about her food allergies. No more are the days of having an educated adult in my daughter’s immediate environment, a person who not only understands the severity of food allergies, but who also has a picture of my daughter in a neat little binder with bold red letters: food allergies to peanuts, tree nuts, eggs, wheat (yes, they even understand that, as far as the food allergy world is concerned, peanuts are in fact different than tree nuts).

And so my learning to let go continues…I must think outside of my perfect little elementary school box to create a safe environment for my ever-more-autonomous daughter. I will still meet the staff, school nurse included, before school begins, I will still educate the staff until I feel comfortable, I will still review with my daughter the food allergy management plan, I will still keep all lines of communication open and nurture my relationships with the school staff as the year goes on. And then I send her into the world of Jr. High, me with a little less control and her, with a little more independence.

Do I trust her? Yes! Is she educated enough to make her own decisions about what food she puts in her mouth? Yes! Is she responsible enough to carry her own Epi-Pen? Yes! Is she mature enough to react quickly in an emergency situation? Well, is she? Yes, I’ve taught her everything I know. Yes, she can talk me through every kind of scenario I can throw at her. But the question still nags, is she mature enough to react quickly in an emergency situation?

Am I mature enough to react quickly in an emergency situation?

And so my learning to let go continues...

Posted by Ann Marie at 3:02 PM | Comments (0)

May 10, 2007

Problems with Food Allergy Warning Labels

NPR published an online food allergy article regarding the new labeling law that went into effect in 2006. By now, you probaly know about this law. Starting in 2006, all food products must clearly state whether they have one of the top allergens (peanuts, egg, milk, soy, tree nuts, wheat, fish). But there are still problems with the labels that you have to watch out for.

The now common MAY CONTAIN label is unregulated by the FDA. This label is a catch-all (or CYA, if you prefer) for companies that don't have a "clean" manufacturing environment (that is, each product line controls its ingredients to ensure no cross contamination). I've been in "clean" manufacturing facilities before and know well that it takes a lot of effort and money to ensure an environment without cross contamination. The pharma manufactures have this as a standard but their product margins are quite different than most food manufacturers.

The real problem is what does "may contain" really mean? Maybe that product is loaded with peanuts, maybe there is none. The NPR article mentions that teens are ignoring the label due to its ambiguity and the fact that it is found on so many products. That's a scarey thing but teens are known for taking risks.

Posted by David at 7:53 AM | Comments (1)

June 14, 2006

Teenage Bully Pushes the Limit at Lunch

Here's another on-line article from news.com.au
 that describes an attack on a 13 year old peanut allergic student. This is scarey stuff that ended up in a anaphylactic reaction. What I find most interesting is the parents reaction; it would have been easy to lose control at that point. They didn't take legal action, they chose to educate instead.

One in 20 Australian children is now allergic – potentially fatally – to some form of food. In the majority of cases the culprit is the humble nut. And now, across the country, the stakes are getting higher.

When the hunk of sandwich hit the back of his head, Daniel Browne – usually the most careful of 13-year-olds – instinctively swung around. His assailant, standing three metres away, wasted no time hurling another piece. This one stuck to Daniel's right cheek. Daniel pulled off the projectile and held it under view: a three-centimetre-square, open shred of bread . . . smeared in peanut butter. His cheek began to tingle but he did not yet feel fear.

Classes had just broken for lunch at the Gap State High School in Brisbane's west. Daniel, carting his backpack, tossed the food scrap in the bin and walked swiftly to a nearby water bubbler, where he prepared to activate the first stage of a management plan for his life-threatening allergy to peanuts. He reached into the backpack's front pocket and unzipped the bum bag that carried his EpiPen – an auto-injector capable of rapidly dispensing a dose of epinephrine (or adrenalin) into the bloodstream – slower-release antihistamine tablets, a Ventolin inhaler and Panadol. He punched out an antihistamine pill from its foil seal. Then his tormenter sidled up.

The boy was a classmate, with some grasp of Daniel's sensitivity to peanuts from their days at the same primary school. As payback for an earlier classroom altercation (Daniel reported him to the teacher for continually interfering with his work), he had chosen to fling the fragments of a peanut butter sandwich. It was a little after 1pm on a windy November day last year. And the stakes were about to climb exponentially.

Bending over the bubbler to take a mouthful of water in readiness for the antihistamine, Daniel heard a voice: "Would you like some of this" The boy waved another bit of the sandwich, peanut butter exposed, under Daniel's nose. "I was surprised, so I took a deep breath and inhaled," recalls Daniel, a bright student and talented pianist who at the time was nearing the end of Year 9. He gulped the tablet, but antihistamines take about 15 minutes to kick in and he knew he was no longer dealing with a lesser, skin-contact reaction. "Immediately, my eyes and throat and tongue started swelling," he says. "Eventually, my tongue cracked open and bled."

Daniel had gone into anaphylaxis: the bogey word among exploding numbers of food-allergic children in Australia and throughout the world. An anaphylactic reaction, the most violent form of hypersensitivity known, can cause circulatory collapse and airways to swell so tightly that victims are promptly denied breath. Invariably, they won't crawl out from under the allergic avalanche without the reversing effects of life-saving adrenalin.

Daniel grabbed his mobile phone and went to the pre-programmed number of the school office. "Look," he told a staffer, "you're going to need to call an ambulance. I'm on my way."

Before he took off, he dipped into the backpack again and picked out his EpiPen. When he got to the office, breathing was painful and practically impossible: "My tongue had marshmallowed and nearly filled my mouth. I couldn't draw breath through my mouth." Just before the ambulance's arrival, five to seven minutes after it was called, Daniel slammed his EpiPen into the muscle of his outer right thigh.

Sometimes, a single EpiPen shot is sufficient to counteract the march of anaphylactic symptoms. Yet in the back of the ambulance, Daniel succumbed to an episode of frightening scale. As his blood pressure dropped perilously low, five more doses of adrenalin, 125mg of hydrocortisone steroid, Ventolin and oxygen were administered in the ten-minute race to the Royal Children's Hospital. In the resuscitation area of the hospital's emergency section, he was intravenously fed 20 additional doses of adrenalin over the next five hours – or about one every 15 minutes. Around 6.30pm, he was stabilised and admitted to the intensive care unit where he remained for the next 17 hours.

HAVING COPED WITH DANIEL'S ASSORTMENT OF serious allergies since he was an infant – he has also had anaphylactic responses to mould and pollens – his parents, Don and Conny, thought they had seen and felt it all. But watching helplessly over their firstborn child as he almost died amid a tangle of machines, tubes and nine medical personnel in that emergency room, their distress segued to anger.

"It's changed everything," says 42-year-old Don Browne, a security software developer, "because the whole game turns around when you realise you're at the mercy of anyone. We can teach Daniel to recognise allergy threats in the environment and protocols for reducing risk. (But) we can do nothing about a deliberate assault."

The Gap High's principal, Regan Newman, was not briefed on the incident until he returned from leave at the start of the new school year. "I considered (the attack) to be a dangerous action, that concerned me," Newman says. An acting principal had served the offending boy with a three-day suspension from school, where he was later heavily counselled. The Brownes and the school were satisfied the boy hadn't comprehended that Alex's peanut allergy could be fatal. Police weren't called, and Conny and Don decided not to pursue legal action. This time.

Instead, they have turned their energies to awareness... more

Posted by David at 8:13 AM

April 10, 2006

Study Finds Teens at Highest Risk

A sizeable number of food-allergic teens admit to risk-taking that varies by social circumstances and perceived risks, according to a new study presented today at the 2006 Annual Meeting of the AAAAI.

Adolescents and young adults who live with food allergies often leave home without their epinephrine kits, and almost half would be willing to eat a food that is labeled as potentially containing allergens.

Scott H. Sicherer, MD, Mount Sinai School of Medicine, New York, NY, and colleagues looked to identify why adolescents and young adults are at high risk for fatal food anaphylaxis. Participants, of which 49 percent male, were 13-21 years of age, with three-quarters suffering from peanut allergy or 2 or more allergies, 82% having anaphylaxis and 52% more than three lifetime reactions.

Nearly three-quarters (74%) said they always carry epinephrine, but that percentage varied during activities (ranging from 94% when traveling to 43% when playing sports). Three-quarters said they always read food labels, but 42% said they would eat a food labeled "may contain" an allergen. Teens don't always tell their friends about their food allergies (60% do) and 68% feel educating their friends would make living with food allergy easier.

The results imply educating teens, and people around them in social activities, may reduce risk-taking and its consequences.

source: American Academy of Allergy, Asthma and Immunology

Posted by David at 11:31 AM

January 14, 2006

Teens with Food Allergies and Peer Pressure

You can picture the situation... When a boy knocks on your front door to take your daughter out on her first date, he had better brushed his teeth and flossed, used mouthwash and scrubbed his face and hands.

(Quick note, just the thought of him need to wash his hands makes me cringe as a father! OK, I'm ready to continue....)

Just a small trace of peanut on her date’s lips or hands could cause her to go into anaphylactic shock. And if the boy doesn't know/care enough about the allergy, what are the odds he'll know what to do with the epinephrine shot if she cannot adminster it herself?

First dates for food allergic teenagers means not only having to worry about what to wear, what to order but also but what his/her date has eaten or touched hours before they showed up. Asking about it is a little embarrassing. Not asking could be deadly. The death in November of a 15 year old with a peanut allergy after she kissed her boyfriend, who had eaten peanut butter, has given parents of food-allergic teenagers cause for concern.

In those early dating years, parents should plan to have a frank discussions with all of their son or daughter's dates. Working with their child on how to approach the topic may help to alleviate some of the stress and embarrasment. This LAST thing you want to happen is your teen to be so embarrassed that they simply go out with their friends and meet their "date" at the mall or restaurant in order to avoid the embarrasment of mom/dad asking questions.

Posted by David at 12:49 PM

November 26, 2005

Teenager with peanut allergy dies after a kiss

According to news reports today, a Quebec teenager with a peanut allergy has died after kissing her boyfriend who had eaten a peanut butter earlier in the day.

The fifteen year old went into anaphylactic shock and was not helped by a shot of adrenalin. It is unknown how soon the adrenalin was given to counteract the reaction.

Peer pressure is real and the importance of not hiding the allergy from friends is critical, especially if there is going to be intimate contact. We don't know what was communicated ahead of time and the contamination was likely accidental.

Our prayers go out to the victims parents and friends.

Posted by David at 7:55 AM

September 25, 2005

Be careful of language when describing your child's food allergy

Well, there it is again... an article describing schools and keeping a child with a food allergy safe. In this case a peanut allergic child who attends Jr High school.

Birthday parties? Never, says Carolyn. 'People are terrified to have him in the house in case something happens.'

Really? Her son doesn't get invited to birthday parties because of the other parents' fear that something might happen? I know this mom loves her son, that is clear in the article, however, once again, be careful of how you educate other regarding your child's food allergy.

But wait... there's more. Another mom (regarding peanut free schools) compares the volatility of her 12-year-old son's deadly peanut and tree-nut allergy to “putting a loaded gun on the table. This kid could die from a nut. If someone put a gun on the table and there was potentially deadly situation, everybody would scream, ‘Oh, my God!' But that doesn't happen with nuts.”

Ok, relax... a loaded gun on the table could kill anyone of the children sitting round that table (and anyone else in the school for that matter). I'm sorry but this is a terrible way to communicate the issue. Think about one of the other parents learning about the seriousness of the peanut allergy for the first time, is this really how you want to communicate the issue?

Two of our kids (out of 4) have life threatening food allergies (peanut and others), so I know this is serious stuff. I believe with greater care in the communication of the problem and the suggestion of effective and reasonable solutions, the child can participate in all the typical activities and be accepted by their peers (and the other parents).

Posted by David at 4:37 PM

September 12, 2005

Gone too far? Banning nuts from Middle School.

I read an child food allergy article from the Kentucky Lexingon-Herald about a local middle school banning PBJ, peanut snacks, and nuts of any kind. Is this going too far to protect your child with a severe food allergy?

The principal was quoted as saying, "He can't live in a bubble, so we change the environment." Seems to me what they’ve done is expanded his bubble.

The article described how the school keeps EpiPens on hand and that the student with a peanut allergy carries his own EpiPen. It also makes mention of other special need students with diabeties and bee stings allergies. So, should sugar be banned and bee netting be put up around the school as well? Sound silly? Yes, I think so too.

It went on to say that the principal’s office “hasn't fielded calls from parents angry about food limitations” and that "The children were very good about making sure nothing in this environment would put him at risk." My fear would be by the time kids are in Middle School or Jr High, they are telling their parents less about the details of their day. Plus, bullies get bigger and meaner as they get older. This is the danger in my mind. What about after school? What about at the baseball game? Will the student look out for himself or will mom or dad be there every minute of every day outside the classroom?

Look, I have a few years before my oldest starts Jr. High. I don’t have all the answers, however, I do believe that we need to let our food allergy kids become independent. We spent so much of our time and thought on keeping them safe when they couldn’t keep themselves safe in the early years. At some point, they need to spread their wings. In my mind that means, good communication with the school administrators, teachers, friends and parents. And most importantly, a child with the confidence and communication skills (and an EpiPen on their hip) to keep themselves safe.

Posted by David at 8:05 AM

August 9, 2005

Teens with food allergies

What is it like to have a teenager with a food allergy? Actually, I have no idea. My oldest isn’t even out of elementary school yet! I just read an article in the Food Allergy and Anaphylaxis Network newsletter entitled What Were You Thinking? (Vol. 14 No. 6) It’s for parents of teenagers with food allergies and is really well-written. It says that “studies have shown that teens with a food allergy are the highest risk group for experiencing a severe or fatal allergic reaction.” Great! No wonder I get butterflies when I think too much about the future. The article explains why teenagers engage in risky behavior and what parents can do to help their child or potentially make matters worse, specifically related to food allergies. For instance, a teenager needs to think about (or worse, ask) what their date ate before they can have a good night kiss. Wow. How do you encourage your teen to do this without being embarrassed?

It seems like a really good starting point in this whole parenting-a-teenager-with-food-allergies thing. I know I’ll be saving it to re-read in a few years. I sometimes feel very frightened if I think too far into the future but then I remember I have built a good support network, including FAAN. Most importantly, I am working hard on keeping my communication open with my children and learning all I can about food allergies. I would recommend reading the article and welcome your comments and suggestions.

Posted by Ann Marie at 9:07 PM