My next guest approached me and wanted to write something for the blog. I think we can all learn from one another so I was happy to have her share her experiences with us. After reading her piece I was really taken aback. I found it very well written and quite informative. I also found it really interesting to read advice from someone who has lived with food allergies their entire life. Daniela is an inspiration. I can only hope my son is able to learn to manage his allergies and live his life to the full extent that Daniela has.
My name is Daniela Vosti. I am a senior at UCLA, graduating in June with a double major in Psychology and the Study of Religion. After graduation, I plan to pursue a Ph.D. in Health Psychology and a career in allergy counseling. I was born in Rockville, Maryland, and moved to St. Helena, California with my family when I was 9 years old. I have had a severe peanut allergy my entire life. I have run the gamut of allergic reactions, from minor rashes on my face to nights in the ER – you name it, I’ve experienced it. With the help of family, friends, and medical personnel, I have learned to manage my severe food allergy and to live calmly and happily with it. I hope my tips will be helpful to you!
I do not know what it is like to have a child with a food allergy. I cannot imagine what it feels like to know your child’s life is in more danger than that of their peers. What I do know is how it feels to be that child. I do not have all the answers to the myriad of questions posed by parents of children with food allergies, but I have come to terms with my own allergy and I know what works for me. I am here to give you a practical approach on managing a severe food allergy in the hopes that you and your children can capitalize on these lessons and avoid the dangerous and unproductive short-cuts and oversights that can lead to serious episodes.
I have lived communally in a college dorm and in a sorority house, have gone to parties and other social events, I studied and traveled abroad, I fly in airplanes, and have eaten at all kinds of restaurants. I engage in all of the events and activities that my peers engage in, I just do so with much more caution.
Here is what you need to manage your allergy and enjoy your life:
Medicine, Foresight, Preparation, and Help
- Get the medication you need. Double it. Make sure you have all medication you could possibly need with you (i.e., on your person) at all times. When you have that, double it. Have twice as much as you need – that way, no matter what, you will always be prepared. I carry two Epi-Pens, anti-nausea medication, an epinephrine inhaler, and Benadryl on me at all times.
- Do not self-medicate. Even your best guess is still a guess. I have made this mistake multiple times, and I no longer ever do so. If the reaction is anaphylactic, administer an Epi-Pen immediately and call 911. If it is less severe, you still need medical assistance – let trained allergists provide guidance in the event of even (seemingly) modest reactions. Establish a 24/7 link with a certified allergy care center and use their emergency hotline at the outset of every allergic reaction for help in determining what medications to take, who should administer them, and what (if any) additional medical treatment to seek. Even what may seem to be a very minor reaction (i.e. a tiny rash on your child’s lip) can get worse over time, so it is crucial that you seek medical advice for every allergic reaction.
- Get medical support. Find a doctor who is supportive, understanding, and productive. This will decrease the frustration and resentment both you and your child will undoubtedly feel toward his/her allergy. (PS, this resentment is normal…see below).
- Be food self-reliant. Always bring a safe snack or food wherever you go, or buy your own safe food (as opposed to being given food). Imagine the food options away from home all contain allergens. You need to be self-sufficient in any and every situation.
- Be on the defense. You, and your child, are your own best advocates. Ask about ingredients and food preparation techniques everywhere you go. If people give you a hard time, be polite, but assertive – if you don’t get the answers you need, leave. You will encounter ignorance and insensitivities everywhere. Nothing is worth compromising your safety.
- Inform people about your child’s allergy. Tell every single person you know about the allergy – the more people who are aware, the more people there are who can help you and your child. Make sure someone always knows where (on your person) your medications/telephone numbers are. Have your child wear an allergy bracelet with his/her name and allergy written on it. Give your friends an example of what to say over the phone in case of an emergency – (e.g. “I’m with Daniela. She has a severe peanut allergy and is having an allergic reaction. What should I do right now?”).
- Tell people how to help you and let them do so. In one sense, allergies are not personal battles. It takes a village to keep your child safe. Tell your children to tell people when they feel unsafe food-wise in an environment, when they are scared, when they struggle with the inevitable vulnerability of allergies, and absolutely tell someone if they are having an allergic reaction. Parents, show people how to use an Epi-Pen and where you keep it. People want to help you, but you have to let them. Most importantly, trust people to help you. Attempting to manage a severe food allergy on your own is deeply disheartening and, quite frankly, impossible. You can’t prevent reactions on your own, and you definitely can’t manage physically having an allergic reaction on your own. Believe me, you need a hand to hold in the Emergency Room as much as you need Benadryl.
- Make it personal. On the other hand, allergies are personal battles. No one but you knows what it feels like when your child is in the hospital bed. No one but your child knows what is like to be in the hospital bed. So, make it personal. The allergy is a part of you, and your child, that is not going to go away. Discover what helps you feel safe and feel better after a reaction, and do those things.
- Be kind to yourself and forgiving of the world. You will often feel like the world is out to get you. Remind yourself that an allergy is not your fault. No, you don’t deserve it, but it is not going to go away. Take a deep breath and remember that you deserve to be happy, healthy and successful despite the allergy. Most importantly, give yourself a break. Allergies are not easy to handle, and you must forgive yourself the time it takes you and your child to get back to normal after a reaction.
- Vent. It is okay to be mad when you (or your child) get sick. It is okay to be frustrated. Most allergy medications are also sedatives/steroids that can have lingering effects like anxiety and depression. It takes time to recover, emotionally and physically, from a reaction, and that is okay. It isn’t fair, and sometimes the only thing you want is for someone to agree with you. I do not have an overall negative reaction to my allergy, but there are days when I have a reaction or can’t do (or eat) what everyone else is doing (eating). On these days, I have my moments of self-pity. It’s normal. You’re allowed to be annoyed, too. Don’t feel bad about finding it annoying – there are days when I hate the limiting nature of a food allergy. If there are days when you hate it, just hate it. You are absolutely allowed to wallow in the unfairness of it every once and a while. The key is to not let self pity become part of your regular thoughts and routine – you need to put your child’s allergy in perspective, prepare and adjust as need be, and move on.
- Be positive and proactive. You cannot make it go away, but you can make it better. Be cautious. Be prepared. When you are not with your child, give clear instructions to other parents/teachers/etc about how to protect your child and what to do in case of an allergic reaction. Be honest when you feel unsafe. Your child’s allergy is nothing to be ashamed of. Tell people around you, and those who love you will want to help you – you would do the same if the roles were reversed (and by the way, be prepared to do so).
The bottom line is – allergies are not fun. They are annoying and they are very scary. But with the correct information, preparation, and support, you can be successful and safely live with a food allergy.
Thank you all, again, for giving me the opportunity to share my experiences with you. I hope these tips were helpful! Please do not hesitate to contact me with feedback, advice, or questions – any and all comments are greatly appreciated 🙂