If you’re child was diagnosed with severe life threatening food allergies as an infant, most likely they’ve been going to allergist appointments for years. Also most likely, they haven’t been that involved with the appointment beyond saying yes or no when the allergist asks them a question. And that’s fairly regular. How often do you proactively ask questions of doctors, e.g. what will these test tell us, what are the next steps, what do my symptoms mean, how can I proactively protect myself, etc.? And more to the point, how often do your children ask questions of their allergist or their medical professional? I’d hazard a guess that it’s not often.
As a food allergy counselor, I believe strongly in giving children information in an age appropriate way so they can integrate their food allergy diagnosis into their sense of self and become independent, self-aware adults with full, fun lives. An important part of that process is having them be involved in and take ownership over their food allergy diagnosis. Children need the medical facts to begin that process.
I cover the doctor patient relationship in a chapter in my book, Allergic Girl: Adventures in Living Well with Food Allergies (Wiley, 2011) and how to create a TEAM YOU with your medical team, as an adult. I’m suggesting you go a step further and encourage your middle school aged child* to engage their medical health professional team directly.
It’s a game changer for you, your child, your family’s understanding food allergy and mainly, your understanding of how your child understands food allergy.
An anxious child, one that is fearful of food allergy monsters, needs clarification of their food allergy diagnosis; how to identify food allergy symptoms and what they mean; to explore their anaphylaxis action plan and how and when to enact it; and to go deeper into risk management strategies. All with an eye to help them understand the real risks and the irrational fears and to learn how to separate those thoughts in their minds and in their behaviors.
Some ways to start this process will be encouraging your middle school aged child to ask questions of their board certified medical healthcare provider to get the real facts about food allergy as it relates to their diagnosis. My suggestions for how this process might look are:
1. Make an appointment with your trusted board certified medical provider. Ask for a “consultation”. Tell them that your child has some questions about their food allergy diagnosis. Ask them if they would like these questions emailed ahead of the appointment. If they say yes, send them.
2. Ideally, the whole family would attend this consultation so everyone can hear the same messaging at the same time and underscore a consistent message to your child after the appointment.
3. Prepare for this appointment by having a conversation, or series of conversations, at home before your appointment. Ask your child about their food allergy fears. Write down a list together. While creating this list do your best to *just listen*. Many of your child’s fears will be implausible, irrational and make no logical sense and that’s why they’re fears, not truths. Do your best just listen. Without judgment. And be their scribe. These are their fears and they need to be heard.
4. My hope is they feel empowered to ask the scary questions, the ones that may be keeping them up at night, stopping them from engaging with friends or in sports or trusting your cooking. If they feel shy or uncertain, make sure those get questions asked in some form.
5. Help your child organize their fear list as many questions will be repeats. Refine the list to the must ask questions, the ones that are really troubling them. Bring this list with you to your allergist appointment.
6. Encourage your child to ask the questions directly. Pediatric allergists (and pediatricians, in general) usually love when kids get involved and ask questions.
7. Either have your child write down the answers or you record the answers. Ask the allergist how you may follow up with additional concerns or questions (via phone, email or appointment).
8. When you get home, make a copy of the Q&A. Keep one for your records. Keep a copy for your child’s special use. Ask them where you should put it so they can read it when they feel nervous or forget the answers. Many times I’ll suggest that food allergy counseling clients paste a copy in their child’s room, a reminder of the answers to their questions. It can become a fear versus reality cheat sheet.
9. Let the information sink in. It will sink in over hours, days, weeks. Let it.
The point of this whole process is to empower your child with real food allergy information so they can begin to separate their fears from reality.
And that’s my next blog topic, the final in this series: helping your child separate food allergy worry from healthy food allergy vigilance.
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*I'm using Middle School aged children to represent the middle school years 8-12.
NB: When fears are not managed, children can suffer or withdraw. If you witness troubling behaviors in your child, please have them evaluated by a local child psychologist, social worker or psychiatrist as well as your allergist and your pediatrician.
