Helping a family dealing with a new diagnosis can be challenging. This is a conversation between a Director and a parent about a child with a food allergy. I have had many conversations like this over the years with parents.
I have also been on the other side, as a parent with a child who has gotten a life changing diagnosis. It can be hard. Strike that. It will be hard. This parent has learned that a significant part of her/his life and that of the child in question will be different. It will affect the child, siblings, parents, grandparents, teachers…the list is long.
As a Director we have to offer support and understanding. Don’t let the parent horrible-ize or minimize the issue. Help them to find resources. Be the calm in the storm. You got this!
Q: I’m struggling to help my family adjust after we found out one of our children has a serious allergy. Katie is only four years old, and she was just diagnosed with a wheat allergy.
How can I help my family accept the changes and help Katie?
Katie is our youngest, and her older siblings are struggling to understand what is happening, or why we have to make changes in the kitchen.
To keep Katie safe, we have to make big changes in our entire household.
One of the issues I’m seeing is that many members of our family, including my parents and sisters, don’t understand how serious the allergies are for Katie. They keep saying how it’s not as serious as a nut allergy. However, it’s serious for Katie, and she has horrible reactions to wheat.
What can I do to help them understand and keep Katie safe around them? I’m worried they’ll keep feeding her wheat.
A: Food allergies should always be taken seriously because they can be unpredictable. According to the American College of Allergy, Asthma and Immunology (ACAAI), patients can experience a variety of symptoms, including anaphylactic reactions. Allergies can be deadly for some patients.
It’s difficult for families to handle such a diagnosis in a young child. She may have to spend the rest of her life dealing with this condition, so it’s hard to accept it.
However, you’re taking the first step to help Katie by recognizing that she needs her entire family’s support. Allergies in a young child can lead to hospitalization and multiple doctor visits. It’s important for your entire family to recognize the severity of the situation.
You may want to talk to Katie’s doctor and ask for pamphlets or other printed information that you can share. Your extended family members may also want to attend some of Katie’s doctor appointments and ask questions.
Have a family meeting and discuss Katie’s condition. You’ll be able to address any questions or concerns they may have about her allergies.
Q: I like the idea of holding a family meeting to discuss Katie’s wheat allergy; however, I don’t think it will help with another issue. Katie’s doctor told me she’s very sensitive to the smallest amount of wheat. So we have to completely remove all the wheat in our kitchen because even a crumb can make her sick. That means we have to completely eliminate a lot of the food that our family loves.
My other children think I’m taking it too far and just want me to restrict a few shelves to be wheat-free. I want everyone to be happy, but I can’t take the risk of crumbs ending up in Katie’s food.
We’ve already had several visits to the ER because Katie’s food got contaminated with wheat.
How can I help my other children accept the changes we need to make for Katie?
A: Children can have a hard time accepting that a sibling has an allergy. In addition to the attention the sibling suddenly receives because of the diagnosis, the household tends to go through multiple changes.
Your children may not understand how serious Katie’s allergy is to her health.
You may want to purchase books about allergies or get other material that helps explain the dangers of allergies to children. Explain how Katie can end up in the hospital if she eats a crumb of wheat.
Your other children are part of Katie’s support network. Due to her young age, she may need them to be her voice in difficult situations that may involve wheat.
If your doctor has asked you to make big changes in the kitchen to keep Katie safe, then it’s important to follow these instructions.
Although your family may need time to adjust to the changes, they’ll learn to accept them. Katie’s health can’t be put in jeopardy every time you cook, so you have to follow the doctor’s advice.
Q: I intend to follow the doctor’s recommendations for Katie, but I’m still worried about how she’ll handle the allergy because she’s so young.
Katie is four and has a hard time understanding why she suddenly can’t eat some of the food she likes. She thinks she’s being punished or in trouble. She doesn’t believe me no matter what I say to calm her down.
What can I do to help Katie understand she has an allergy and isn’t being punished?
A: It’s important to explain the allergy to Katie on her level. She needs information that is easy for her to understand. She won’t be able to process medical jargon or understand what some of the reactions mean.
Your doctor may also have resources aimed at young children, such as books, posters, and other fun items that help children understand more about allergies. You can also search online for resources and ask other parents to help you find them.
Although you don’t want to scare her, Katie needs to know that eating wheat can make her sick. You may want to remind her about the recent ER visits you mentioned. It may be tempting to hide some of the serious issues from a young child, but her safety depends on understanding the importance. You’ll simply have to adjust the terminology to her level.
If Katie misses some of her favorite foods, experiment with creating new dishes she may like. You can find multiple cookbooks and online recipes that are designed for people with allergies. In time, she’ll find substitutes for her former favorite foods.
Instead of complaining about her health, you may want to direct all conversations to stay positive. In addition, Katie can benefit from feeling special at this time.
You may want to purchase a special ID bracelet that notes her allergy when she’s with others and get her allergy stickers. Let Katie participate by picking out her favorite colors and styles.
Q: I’m surrounded by family, but I feel alone with this issue.
No one else in our family has a wheat allergy, so Katie is the first. My husband doesn’t understand how she developed it and blames my difficult pregnancy for creating it. Our doctor states that my husband is wrong, and it’s not my fault.
Unfortunately, I still feel guilty. Between the shame and accusations, I feel like I’m dealing with Katie’s health issues on my own.
I’m tired of dealing with everything on my own, and I need support. What can I do?
A: Try joining a local support group with other parents who have children with allergies.
Support groups can help you work on eliminating the guilt and shame you feel about Katie’s health. They can also help you learn more about keeping her safe. The group members can also offer advice and tips that can help your household transition to eliminating wheat.
If you can’t find a local support group, then consider joining an online version. You can find a variety of support groups on social media such as Facebook.
It sounds like you also want your family’s support.
It’s important to understand that a serious allergy diagnosis is difficult for some family members to handle and acknowledge. They may need more time to accept it and come to terms with Katie’s new diagnosis.
You may also benefit from family or individual therapy if you’re struggling with shame and guilt.
You don’t have to deal with these difficult emotions on your own, and therapists can help you cope.
Q: I understand I can join support groups, but they’ll be filled with strangers.
I want my husband to be part of my support net. However, he doesn’t seem interested in helping me educate the entire family about Katie’s allergies.
Instead, my husband tells the children and everyone else to go to me if they have questions.
I don’t mind answering their questions, but it would be nice to have his support and help. I can’t do everything on my own. I’m already struggling. My husband simply sits and doesn’t talk while I spend all of my energy trying to explain things to them.
What can I do to change this and make my husband understand I need his help with Katie’s health? The stress is starting to overwhelm me, and I’m worried that it will start to affect my own health.
A: This is a significant change that affects your whole household and Katie’s entire life. Your husband may still be trying to process the diagnosis and figure out how to help.
Your husband can still be an important part of your support network and make it easier to handle the upcoming battles you may face. However, you may just need to give him some time and space to adjust to Katie’s diagnosis.
Have a calm conversation with your husband and explain that you need his support right now. He may not understand that you don’t want to be the only one to answer questions. He needs to know that you want him to help educate the children and other family members about Katie’s health.
You can split the duties, so you don’t feel overwhelmed. For example, you can answer questions from your parents. Your husband can answer questions from your other children.
In addition, you can split other family obligations, so your stress levels are reduced. Try rotating with your husband in taking Katie to her doctor’s appointments or talking to her teachers.
With time and patience, your whole family will adjust to these changes and learn to support Katie in her new path.
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