Questions and Answers: A Teenager’s Perspective: Living with Multiple Food Allergies, Atopic Dermatitis and Asthma

My 15-year-old son, Michael, has lived with multiple food allergies, atopic dermatitis and asthma since he was a baby.

Multiple Food Allergies: Dairy, eggs, beef, sesame, fish, shellfish, peanuts/tree nuts, raspberries and mustard.

Atopic Dermatitis: his triggers include: heat, stress, grass, citrus, cantaloupes, and non-hypo- allergenic detergents (Tide in particular)

Asthma: his triggers include: dust, exercise (over doing it), hockey arenas (over doing it on the ice), colds, really cold air and really hot air (high humidity), and lots of pollen in the air.

I thought it would be interesting to post a question/answer period with my son to get a teenagers perspective on what it was like growing up and living with the tri-factor of the allergy world: multiple food allergies, atopic dermatitis and asthma.

Michael  is entering that stage in his life where studies have proven that teens with food allergies take more risks. Two good sites for teenagers with food allergies are FAAN, The Food Allergy and Anaphylaxis Network and Why Risk It?, at Anaphylaxis Canada. Both provide information for teens with food allergies.

In order to help our teenagers through this period of adjustment, I believe we need to: ask questions, truly listen, keep the lines of communication open, and show compassion, love and understanding. Our children’s’ journey with food allergies, atopic dermatitis and asthma will soon be their’s alone…they need all the support they can get.

So…what is a teenager’s perspective on growing up and living with the tri-factors of the allergy world?

In typical teenager fashion, Michael tended to want to rush through the questions with yes and no answers. A little ‘pulling of teeth’ garnered a few more ‘tid bits’. As you can see from the picture below, we were still on speaking terms at the end.

michael and me after our interviewIn all honesty, I can’t express enough how proud I am of Michael. He has truly been through so much…he deserves a happy ending.

What is your earliest memory of living with atopic dermatitis?

I remember staying home from school because my skin was so bad. It was probably in kindergarten or Grade 1.

Food allergies?

I remember getting my first allergy testing done on my arm. It was very itchy and it hurt a bit. Not like it is now. I like to get it done on my back now because I don’t like to see it. It doesn’t hurt… I think it hurt because I was young and was scared.

Asthma?

Playing road hockey. I remember having coughing fits.

How would you describe what it feels like having atopic dermatitis?

It sucks!

I mean what does it FEEL like?

I try to block it out. I don’t feel it anymore.

What gave you the greatest comfort when you were uncomfortable?

When you sang ‘Ally Bally Be’ to me.

What did you like about my singing that song?

I liked it when you would sing and rub my back. I would forget about the itching and was able to fall asleep.

Did you ever notice a correlation between food and your skin?

Yes. Oranges for sure. I would eat too many and then my skin would go all red. When it was red it was dry and when it was dry it was terrible.
One time I had a whole bag of Swedish Berries and went all red in the face.
Coke would make my skin break out the next day after I drank it.
Yes, we discovered that Coke had caramel in it which can be derived from dairy. After you stopped drinking Coke, the break outs on your hands went away.

Was it hard to focus at school? What helped?

Yes. Nothing helped.

How would you describe the on-coming of an allergic reaction?

I would get a tingling on the tongue. After that I would feel like I was going to throw up and I would.

Were you ever bullied or teased for your skin issues or food allergies? Did you feel different? Were you treated differently?

No, I was never bullied. Yes, I felt different but I can’t explain it. Yes, I think people felt and still feel bad for me.

What has having multiple food allergies, atopic dermatitis and asthma taught you?

To be thankful for what you got: my loving family, everything I have and  am able to do.

If you could give any advice to children and parents of children living with multiple food allergies, atopic dermatitis and asthma, what would you say to them?

It will get better eventually…I think. It wasn’t set in stone that I would get better so…I don’t know. I feel I got lucky getting over the eczema part.

What do you do to maintain your skin now?

I moisturize. I like the Vaseline intensive rescue, extra strength, unfragranced formula. I put it on after I shower in the morning and sometimes at night.

Do you feel safe at highschool?

Kind of because I have friends that look out for me. When someone pulls out something with nuts, they tell them to be careful because I’m allergic.

Do you think it helped that your Grade 8 class was educated along with you on the signs and symptoms of an anaphylactic reaction and how to use an epi pen?

I think they feel more comfortable around me.

You eat in the cafeteria surrounded by your food allergens. What steps do you take to ensure you do not encounter any cross-contamination?

I don’t eat anything that isn’t from home. I use hand sanitizer and don’t put my food on the caf table.

You had an allergic reaction this past weekend from cross-contamination. What did that teach you? (Michael ate plain chips from a bag that were contaminated with a dairy dip that his dad had been eating with the chips.)

I need to still be careful eating foods that I can eat.

Eating out in restaurants is on our to do list. Where would you want to go? What would you want to order that you can eat?

Swiss Chalet. A salad with their Chalet dressing, plain baked potato and a 1/4 chicken plate with their special sauce.

Do you ever get frustrated with your food allergies, atopic dermatitis or asthma?

Yes. I can’t eat stuff, I get itchy and I can’t go as hard as I want to playing sports.

What do you look forward to in the future?

Hopefully being able to eat foods that I can’t right now, getting my asthma under control and hopefully I can improve my skin.

So, what do you think about our interview?

Awful…just torture…it was okay…I don’t know…I don’t know what else to say…are we done?michael in our interview

As he walked away munching a Krispie Square, he said, “I hope I get a happy ending…”

“I do too sweetie, I do too!

Remembrance Day: Today I remember all those who dedicated their lives so we may live a better life…especially Thomas Beaton, my grandfather’s brother. He was part of the Merchant Navy and Fishing Fleets (Part 1) and died August 24th 1944. His name, along with many others, is in the Scottish National War Memorial at Edinburgh Castle, Scotland. I have had the priveledge to visit and surprisingly found his name to the shock of my grandfather…priceless!

P.S. As always, any products I mention in these posts are my own personal recommendations. No one’s paying me to recommend them. They’re just what has worked for our family. Your own needs and preferences may be different!

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Talking about atopic dermatitis

Monday was my eldest son’s fifteenth birthday! Wow! In the crazy times of his childhood, I would dream that there would be a time when a sense of calm would settle over us and the madness of our life would be a distant memory. I can honestly say that the time has come! Many would disagree with me on this–from the outside, it still looks hectic–but then again, they have not lived my life.

Strangely enough, it wasn’t Michael’s food allergies that initially troubled me, as much as the atopic dermatitis. Food allergies I could control. Just don’t feed him his allergens.

Believe me, I know it is much more than just that. At the time, though, I was more frantic and disturbed by his skin. At the age of 2, he looked like he had third degree burns. (His skin was so awful that my friends would tell me they were astounded we weren’t being questioned by child services!)

The atopic dermatitis was a different kettle of fish. I could not stop it from erupting on his skin! It is difficult to put into words how sick it made me feel to see my son suffering. He had trouble falling asleep, so I would rub his back and sing to him. He would wake up in the night crying and scratching till his skin bled. He never seemed to wake up happy, ready for the day. His sheets would need changing every day as they would be covered in blood and flakes of his skin. His bedroom floor, as well as the rest of the house needed to be vacuumed every day. His skin would sting while soaking in the tub and he would cry in pain as I administered the creams. Inside all the while, my heart was breaking. I felt like I was torturing him rather than nurturing him.

That’s really how I became the mad scientist! Was it something he was eating? Was it the detergent I washed his clothes and bedding in? Was it the dog? Was it dust? The list of variables could go on!

We sought medical advice from dermatologists: bathe him 3 times a day with an oil in the bath, apply prescription cream, apply lots of Vaseline and give him Children’s Benadryl. We followed their directions to the T, but the eczema would just not go away! Eventually, the dog died, the carpet and curtains were eventually taken all out, hard wood and shutters replaced them, I washed all clothing and bedding in a scent free, hypoallergenic detergent and we limited food that we could visually see caused his eczema: canteloupe, oranges, grapefruit, picking apples, and Coca-cola.

In Grade 6, we tried a different approach. Michael’s skin always seemed to be better in the summer. Why? Was it the sun? Was it the chlorinated water? Was it all the swimming in the lake? Was it the stress free environment of the summer? Was it the change in fresh fruits and vegetables? Again, so many variables!

I brought up with our pediatric dermatologist the option of light therapy. He agreed that it was an option worth trying. Luckily, a clinic that offered light therapy was near at hand. Off we went, 3 times a week for mere minutes of treatment. Michael would dress down to his bikini underwear, done a pair of protective goggles for his eyes and step into a machine the size of a stand up shower filled with lights. A painless treatment that would prove to be the miracle we were looking for! Michael started the treatment in the fall and continued through the winter until the beginning of the summer holidays.

By this time, his skin had cleared, he was sleeping through the night leaving no blood or skin residue on his sheets, his school marks took a leap and best of all……………………………….he was happy!

Michael has not needed to return for further treatments. He occasionally has a small break out of which, he is able to get back under control with his prescription cream, Protopic and moisturizing cream, Aquaphor by Eucerin.

I cannot explain how liberating it is to not have to worry about his skin to the extreme that we were. My advice to others is to try to stay positive. I know it is not easy but it is the only way to keep moving forward. This line of treatment along with other factors unknown, worked for Michael. Each case is its own case and one must keep on trying to find the formula that works best for them.

Michael’s diet may have taken a bit of a back seat for a time. (I have to admit, I was nervous to expand his food repertoire.) Luckily, over the past few years now, Michael has shown an interest in exploring new tastes. I have thoroughly enjoyed playing around in the kitchen with recipes to make them allergen friendly for my boys and their friends. I am excited to continue my quest and to share recipes with others seeking yummy dishes for their loved ones with food allergies!

PS. Any products mentioned in this post are my own personal recommendation. No one’s paying me to include the links! I’m just sharing what works for our family. Your needs and preferences may be different.