First time using the Epi-Pen and the Anxiety that has followed

Posted on January 18th, 2015 by Alison | Posted in Babies & Kids, Emotions, Food Allergies, Peanuts/Nuts Allergy | Read 9 Comments - Add Your Own »

epi pen injectionI finally used the Epi-Pen on my daughter after eight years of managing her food allergies. I used it because I had to. I used it because she asked me to.

We were in Mexico, at a place we visit every year. My daughter is extremely responsible about her food allergies, and carries her “kit” (containing two Epi-Pens, Benadryl and asthma inhaler) with her everywhere she goes, even to the pool. I also had an extra Epi-Pen with me on the trip, so we had three in our possession. The story of BJ Hom is always in the back of my mind when we travel to Mexico — it was there that this young man had an anaphylactic reaction to peanuts but the family did not have an Epi-Pen with them (he had only suffered from hives in the past so they didn’t think it could get more serious than that). We are prepared for an accident in case our vigilance about reading labels, asking questions, and avoiding uncertain foods fails.

On that afternoon at the pool, she selected a popsicle out of a popsicle cart. It had ingredients on the label, both in English and in Spanish. It was a coconut popsicle, containing coconut, cream, milk, sugar, and some additives. Nothing she hadn’t eaten before. Within minutes she came to me and told me that she didn’t feel right. As she was telling me, a large hive appeared on the skin in the lower corner of her mouth. I knew this wasn’t good. Her face had lost its color and dull, dark streaks appeared under her eyes. She said her throat felt “bumpy.” We pulled the Benadryl out of her kit and she took one, and then another. Hives popped out on her stomach, and then on her back.

That day, by our good fortune, my father was hanging out at the kid pool with us. He is a retired pediatrician and I was so glad he was right there at that moment. I showed him the hives. He suggested we head back to the room where he had prednisone in his medicine bag. Prednisone is a corticosteroid that can help reduce swelling caused by allergic reactions, but it is not an immediate treatment since it comes in pill form and takes a little while to have an effect. When we arrived at the hotel room, he gave her a dose of prednisone, but as she held on tight to her epi-pen kit, she said to me, “Mom, I want the shot.”

I looked at my dad and he and I both nodded – let’s do it.

Now, I have to admit that for all of these years I have had a fear of giving the Epi-Pen. I know my allergy mom friends have done it, I know it saves lives, my pediatrician has scolded me for not giving it in a couple of close-calls… I have no explanation for my anxiety about putting this shot in my daughter’s leg. (Perhaps I was scarred by the giant epinephrine shot scene in Pulp Fiction? But it did save Uma Thurman’s character’s life, so…)

I asked my dad to give her the shot. I sat on a bed next to my daughter, while he was on the other side of her and stuck the Epi-Pen in her leg. She was looking at me, away from the shot, and said, “That was it?” It felt like barely a pinch to her. Within minutes, the hive on her face disappeared, her color came back and she was breathing easy. She was a little worried about her rapid heart beat, but we assured her that it was the medicine taking effect and that was normal.

Normally when you give an Epi-Pen, you are advised to go to the hospital or call 911. Sometimes one Epi-Pen isn’t enough, or it is given too late to reverse the symptoms. According to the Epi-Pen website “Get emergency medical help right away. You may need further medical attention. You may need a second EpiPen Auto-Injector should symptoms persist or recur. More than two sequential doses of epinephrine for a single episode should only be administered by a healthcare provider.”

Because we were in Mexico, and we had another Epi-Pen, and my dad was there, and she already had prednisone and benadryl in her system, we monitored her at the hotel. And she was fine. And then I let myself cry.

Since then, her anxiety has risen to a new level. She abstained from eating dinner, even a bowl of rice, while our family was out at a restaurant with friends one night. She refused to go to a volleyball tournament because I was not the one driving the carpool and I wouldn’t arrive until later. Luckily, the mom driving the carpool was a trained nurse and carries an Epi-Pen, but even that almost didn’t convince her. So, this is a new chapter in our lives — the Anxiety Chapter. She strives for independence and freedom, but is weighed down by her fears. I wonder how long this chapter will last.


A Gluten-Free Pep Talk For the Holidays

Posted on November 12th, 2013 by Alison | Posted in Emotions, Holidays/Special Events | Comments Off on A Gluten-Free Pep Talk For the Holidays

Holidays can be a stressful time even without special dietary restrictions – people are dealing with family, travel, expenses, and cooking for guests. Add in a gluten-free diet, or a gluten-free-plus diet and it can make for some challenging moments. When you are the host of a holiday meal or event, you are in control of your menu, but if you are the guest with a restricted diet, a holiday event can stir up a myriad of emotions. I was diagnosed 11 years ago right between Thanksgiving and Christmas, and I remember what it was like to be surrounded by food but feel like there was nothing safe to eat.

Whether you are new to the gluten-free diet or have been doing it for years, you may experience any of the following emotions as a guest at a holiday event:

  • Anxiety
    • Will there be something I can eat? Will there be anything I can eat?
    • This anxiety causes many people to just stay home!
  • Fear
    • Will I get sick… (again)?
    • Fears about cross-contamination can get in the way of any enjoyment of a meal.
  • Embarrassment
    • Will my friends and family think I’m a pain? What if they made me something special and I have to ask about the ingredients or cross-contamination? Will they apologize again and again that they are eating something that I can’t eat?
    • Sometimes you just want to disappear!
  • Sadness or Anger or Resentment
    • Why can’t I enjoy the freedom that everyone else can? How can I enjoy this meal if I can’t have Aunt Susie’s famous pumpkin pie?
  • Hunger!
    • This may just be a psychological hunger, as there may be enough food to eat, but it feels like there is so much that you can’t have.
  • Kids emotions may be intensified:
    • Quote from my daughter: “It’s hard because you walk into someone’s house and there’s all this good stuff all around that you can’t have and you can only have the other stuff like turkey and vegetables.”

I want to tell you a little story about one of my emotional moments…

I was out at a dinner recently in Las Vegas for a work event. I was with a table of about 14 people I didn’t really know at a restaurant that I was told was a Thai restaurant called Jasmine in the Bellagio, so I felt confident that there would be something I could eat. After we got the menus I realized that it was in fact a Cantonese restaurant and when I asked the waiter what I could have on the menu, I was told that there was only one dish that I could have. While everyone else was ordering appetizers, and plates to share, I felt so uncomfortable and was overcome with this feeling that I was going to cry.

I was then mortified that I, a grown woman, would cry in front of all of these people, and what would they think of that?? So I had to have a self-coaching moment – you know, when you’re like:

“C’mon – pull yourself together! You can do it. It’s just one meal. You’re going to get through this. Do not cry. Do not cry!”

I had to look down, pretend I was doing something on my phone for a minute, and gather myself. It turned out that the one dish on the menu that I could have was delicious and… imagine… I had a fun time enjoying the non-food part — the company of the people at the table and the view of the dancing fountains of the Bellagio out the window.

So if you find yourself in one of those tough moments this holiday season (or ever after), try to find your Inner Coach to help you get through.

Maybe you need this kind of coach:

Or someone a little more smiley :):

Or maybe you really need this guy!

Whichever one works for you, use that Inner Coach to guide you when you have feelings of despair. Instead of focusing on what you can’t have, find what you can eat, and get enjoyment from things other than the food. Rather than stand around the appetizer table, have a conversation with an elderly family member. If you can’t nibble from the dessert tray, play with the kids or hold a baby or look through photo albums… and don’t forget to appreciate the dancing fountains outside the window!

Happy Holidays! 🙂
See also: 13 Gluten-Free/Allergen-Free Tips for the Holidays


Gluten-free backlash?

Posted on April 1st, 2013 by Alison | Posted in Emotions, Restaurants/Stores, SF Bay Area | Read 9 Comments - Add Your Own »

The other night I went out with a group of people to a new restaurant called Salito’s in Sausalito, California. I hadn’t looked at the menu ahead of time, but rarely do I have a problem eating out gluten-free these days (unless it is a Chinese restaurant). Restaurant awareness has grown tremendously since I was diagnosed with celiac disease 10 years ago, and especially in the last few years. If you haven’t heard of gluten-free by now, you are living under a rock. But after this dining experience, I wondered for the first time if there could actually be a backlash happening in some places.

CONTINUE READING »


Tragic deaths remind us to take food allergies seriously

Posted on August 29th, 2011 by Alison | Posted in Emotions, Food Allergies, Peanuts/Nuts Allergy | Read 2 Comments - Add Your Own »

jharelldillardI’m in tears as I watch an interview with the amazingly composed father of Jharell Dillard, a teenage boy who died last week from anaphylactic shock after eating a chocolate chip cookie that he didn’t know contained nuts. The cookie was given to him by his aunt by mistake. I feel such pain for this family and fear of losing my own daughter like this. It can happen so fast, and so easily, which is why it is so important to always – always – carry an Epi-Pen. Unfortunately, this boy didn’t have one with him because he was always so careful. As careful as one is, accidents can happen.

As if one death isn’t enough of a reminder, there are two more in recent news.

A 20 year old college student, also in Georgia, died after eating at the dining hall. The full story is here.

A young Bay Area man died just last month after eating a salad that contained nuts. He made the news because he was a key witness in a crime, but hopefully his legacy will be to raise money for food allergy awareness and research, as his friends and family are walking in his honor at the 2011 Food Allergy Walk in San Jose, CA.

I don’t mean to be morbid, but I am still haunted by the horrible story of a 7th grader who died at school in Chicago last December, and the tragedy of BJ Hom, an 18 year old who lost his life while vacationing with his family in Mexico. There is a memorial fundraising run in his honor.

These are reminders to be vigilant about food and to carry medicine at all times, no matter how mild past reactions have been.

Here are some important facts most people probably don’t know about food allergies, according to the Food Allergy and Anaphylaxis Network (FAAN):

  • The severity of a person’s allergic reactions to food cannot be predicted from previous reactions. Someone whose reactions have been mild in the past might react more severely during a next episode. A FAAN review of food allergy fatalities found that most of the people had never had a severe allergic reaction until the one that caused their death. Thus, all food allergies must be taken seriously.
  • The incidence of peanut and tree nut allergy among children appears to have tripled between 1997 and 2008.
  • Even trace amounts of a food allergen can cause a reaction.
  • Most people who’ve had an allergic reaction to something they ate thought that it was safe.
  • Early administration of epinephrine (adrenaline) is crucial to successfully treating anaphylactic reactions. Epinephrine is available by prescription in a self-injectable device (EpiPen® or Twinject®).
  • A study of fatal reactions in children and adolescents found that most occurred at school, and were associated with significant delays in treating with epinephrine.
  • There are no significant risks to giving epinephrine even if someone isn’t having an allergic reaction, unless one has a serious heart condition.

Awareness and education of those around us is the key to keeping our children safe!