My son Roman was born at home, in the home birth that I always wanted. He was healthy and we were elated. But a few weeks after he was born we noticed there was something wrong with his skin.
It kept getting progressively worse. After two months, it was so bad that our doctor told us to go to the emergency room to have it checked. My son had severe eczema and as I was exclusively breastfeeding him. I started to eliminate things from my diet and journaling to see what foods were affecting him and if he would get better. I remember him howling at night as he was swaddled in a blanket to keep himself from scratching himself. It was so painful to watch as I tried to soothe him. After visits to a pediatric dermatologist, his skin did get a bit better. However we noticed that at times when he would touch certain surfaces or objects, his skin would break out in hives and rashes. I always thought he may be sensitive to dairy like myself; little did I know back then how serious his reaction to dairy (and other foods) would be.
When he was 9 months I gave him some cheese.
Since I am lactose intolerant, I can eat cheese and yogurt but I can’t drink regular milk or have real cream. I thought perhaps Roman may have the same intolerance. Instead, he went into anaphylactic shock.
I didn’t really know the signs of anaphylaxis back then; all I could see was that he was coughing and swelling up like a balloon. We called our provincial health line and they told us to go to the hospital right away. From that terrifying incident, we were referred to an allergist and it was confirmed he had a severe allergy to dairy.
Prior to 9 months old, he mostly ate pureed meats and vegetables and fruit. As a result, when he started solids we also didn’t know that he was allergic to wheat as well. A couple months after finding out he had a dairy allergy, he ate something with wheat and we had to go to the hospital again. A few months later we found out he was also allergic to eggs.
Through horrifying trial and error, and many trips to the hospital, we found out that our son is anaphylactic to dairy, wheat and egg.
Being a parent of a child with food allergies is challenging. My husband, my older daughter and I had to alter our life in so many ways. When we first found out about my son’s allergies, I was so anxious and nervous and defensive. Joining online support groups and following organizations that help spread awareness of food allergies has been very helpful for me. At first I thought I had to go it alone, but after posting a comment on a food allergy article online, someone replied and advised me to seek out allergy parent support groups, which has made all the differenc. I don’t know her name but I am always so thankful for her reaching out to give me that great advice.
Our family hardly eats out at restaurants.
There are only a handful of bakeries and eateries that we completely trust. We literally have to pack his food everywhere we go! When we go out we have to wipe down all surfaces because my son breaks out in hives just touching surfaces that may have traces of his allergens. When we go to restaurants or parties with family or friends, we always have to bring his own food. All the conveniences that many families have – the drive-thru, fast food, ordering take-out, eating at the mall – we do not get to enjoy. Although it may be healthier to pack my son’s food all the time, we don’t have the “luxury of convenience” that most families have.
Now that my son is 4, we do try and teach him what he can and cannot eat.
We teach him that he cannot eat “cheese” but he can eat “vegan cheese”. We name foods specifically that he can have instead of in general, like “Gluten-Free Pasta” instead of just pasta. It’s important for him to know the specific words so as he grows he is aware of the differences. We also label his food containers so when he opens the refrigerator (under our supervision), he is learning which food belongs to him. We still have to block the kitchen with a gate so he does not go in there alone. He also has his own snack shelf that he knows is his. In the future we are thinking of having another refrigerator to keep foods separate, however most of my diet is the same as his.
Traveling on vacation is a challenge. We usually have to rent a place with a kitchen so that we can cook everything for him. We have found that many Cruise Lines cater to vacationers with Food Allergies and we love Walt Disney World, we have had great experiences traveling to Disney World in regards to my son’s allergies.
We have been very fortunate to have family and friends who are so supportive of my son and his allergies.
They are always careful about food around him. Our family is always making special dishes for my son and friends are always checking with us to know what snacks to bring him that are safe. Right now, I am with my son most of the time and I bring him to children’s programs that know about his allergies. We are so grateful that they are careful.
Even still, I worry about my son’s future, when I am not going to be there to control his environment.
I worry about food bullying which is happening to children and teens with food allergies in North America and around the world. I worry about how his allergies will impact his daily life as he gets older, like joining any activities or teams with other children his age and just going out with friends. Unfortunately, food allergies are on the rise among children but I do hope that because of this, there will be more awareness and laws in place to protect people with food allergies. I am hoping for my son to advocate for himself and others like him. I hope he is able to do the epinephrine shot on his own and to always remember to carry it with him when he is old enough.
I am thankful for the organizations spreading awareness of food allergies and working to protect those that have them. Unfortunately, some of these organizations started because of tragedies that happened in families just like ours, but they are working hard to ensure our family doesn’t have the same experience. There are many more organizations than just those on the list below, but these are the ones that have helped us the most:
- Elijah-Alavi Foundation
- Red Sneakers for Oakley
- Walk for Andrea
- Turn It Teal
- Allergic Living
- Food Allergy Canada
Companies that I am so thankful for, who spread awareness of food allergies while creating great products that my son loves to eat are:
For parents who don’t have children with food allergies, I hope you are able to include a food allergy child in any way you possibly can.
It really means so much to an allergy family when others reach out to want to help or include our children. Also, people may think jokes about food allergies are harmless (like the many gluten-free jokes or other allergy related jokes out there) but people don’t realize how psychologically damaging it can be for a child with food allergies. But most of all, you can support families like ours by remembering that when food allergies are not taken seriously, tragedy can happen.
Hiromi Okuyama
Hiromi Okuyama was born and raised in Toronto, Canada. She is a wife and proud mother of 2 kids who are 14 and 4. She is a 4th degree black belt in Shotokan Karate and is a children’s karate instructor. Hiromi is also an actress and has been in many commercials as well as being the voice of Farmer Yumi in the 1st season of Paw Patrol. She is the writer Canadian Diva for the travel blog - Tips From The Disney Diva. You can follow Hiromi’s many adventures on Instagram & Twitter: @HiromiActs