Thank you for having us on the #specialneedspotlight. Hi, my name is Liz and I would like to introduce myself and our family. My husband, Jamie and I have three beautiful, loving and super goofy children. Hayden (10), Sabine (8) and Wyatt (6). We live in Severna Park, Maryland. Our house is always loud and full of energy. Our special needs child is Wyatt with severe food allergies. He is one special boy. He likes what he likes and will not change his mind. He is very aware of his allergies. I like to think we taught him well. Really, he just listens to what his body is telling him the minute he eats something.
Miggy: Hi Liz! Thanks for being here and sharing your story with us today. So your son Wyatt has severe food allergies. Can you take me back to the day you first found out about his allergies and the following months as more foods were added to the list? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?
Liz: A few months before Wyatt's first birthday I gave him a lick of peanut butter from a spoon. This food was the only thing his sister, Sabine, ate at this time. Wyatt took his lick with excitement, ran around our kitchen island and then vomited. I thought to myself this does not seem right. I told Wyatt next time rest after you eat, so you don't get sick. Three days later, I decided to give the peanut butter another try. This next time, the PB just touched his lips and he projectile vomited. I knew we had a food allergy.
The next day, we went to the family doctor. Wyatt gave some blood and we were told to see an allergist right away. The results of the blood allergy test detected high levels to peanut allergens. We met with the allergist after a few days. The allergist did additional tests to include the skin test. He had 21 allergens pokes on his little back. The results with the largest reaction had to be re-tested on his arm. After the results were confirmed, the allergist told me to stay away from all tree nuts and peanut products. Do not eat anything from shared equipment or made in a factory that has peanut or tree nuts. They handed me a prescription for some epi pens (Epinephrine injector) and said he is anaphylactic. Make sure you always have the epi pens with you. Then they said with a smile, come back in 1 year for a check up. I stood there with a blank face and could not do anything. I remember walking away from the office crying. I had no idea what I was going to do. How do I make this kid safe? I felt so alone.
Miggy: How do these severe food allergies affect you and Wyatt’s day-to-day life?
Liz: We are learning more everyday. It was easier when he was home all day with us and we could monitor all of his food interactions. We realize that this manner of control does not lend toward a normal life. As he has grown up and begun school, we have had to adapt. We are still a bit nervous and have not done the usual things like take an airplane ride, hired a baby sitter, or left him alone at birthday parties due to an accidental interaction or consumption of danger food.
Liz: Overall, he has only had one severe reaction to peanuts that required him to obtain the epi pen. However, looking back on a number of other incidents, we should have given him epi 3 other times as a preventive measure. His normal reaction to allergens is to cough, get swelling of the lips, tight throat, hives and usually vomits. These types of mild reactions happen nearly everyday, even with us avoiding his danger foods. This is mainly due to his overall list of allergies that are not food, but environmental. For example, when his immune system is low and pollen is high, he gets sick.
Despite the list of allergies, Wyatt takes everything in stride. He is normally very happy and full of energy. When he is sick, he is only down for a bit but recovers quickly. He does not know anything but this life. To him this is normal.
Miggy: What are the biggest worries you face for Wyatt? Conversely what are your hopes and dreams for Wyatt and specifically for managing his allergies as he grows?
Liz: Wyatt is now in Kindergarten. I worry that he will have an accidental reaction at school. I worry that others will not take his medical condition seriously and delay intervention. He has a medical alert bracelet, along with a special medical needs plan at school. As luck would have it, there was an open position at school for a lunch helper. I decided to stop worrying and be proactive, so I started working at the school during the lunch hours. I am glad that I am there to monitor him. He has had many days with hives all over his face even when he is only eating the safe food.
I do hope that one day soon, we will find both the cause and cure for food allergies. I am hopeful that Wyatt will always pay attention to his food prior to eating it. I am hopeful that he will have medical help, when he needs it most.
We are managing his allergy mainly through total avoidance of any possible risky foods. We read and trust a lot of food labels. We limit our exposure by making the safe choice. We do not eat out much. On the positive side, we are very fortunate to be part of a research trials involving Oral immunotherapy (OIT). The research study, http://www.impactstudy.org, is conducted with Johns Hopkins Children's Center is funded by the National Institutes of Health. The three year research trial is very intense includes an initial dose escalation, build-up, maintenance and avoidance phases. Wyatt has just passed his 2 years in the study. We are hoping that he has a successful outcome to allow him to survive an accidental exposure.
Miggy: I don't know if this is still the case, but for a while it seemed like a lot of people would complain about schools becoming "peanut free" zones and in general there seemed to be a negative view towards making accommodations for children and people with severe food allergies. First, is this even accurate? Do you find this negativity towards children with severe food allergies still exists? Second, if it does what would you want to say to people understand as a mother of a child with these allergies? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Liz: I do believe some people have negative feelings toward the food allergy community. I see it often. As a parent of a special needs child, I never want anyone to feel out of place. I will never ask anyone to make something special for him. I see tons of people get upset because their child cannot take peanut butter to school. They claim that PB is the only food their child will eat. I understand this claim. Our daughter was such a child too. However, due to Wyatt's allergy, she has lived without PB for years. She has has adapted and found new things to eat. Parents do not realize that there are different degrees of food allergies just like burns. It seems that today some people have mild allergies to gluten, dairy, or shellfish. Wyatt has a '3rd' degree reaction to peanuts that will kill him without medical intervention. He does not have a second chance.
On the other side, I also believe that some food allergy parents have overreacted to cause such a backlash. Recently there was a news article on a parent who posted up signs during Halloween to avoid danger candy for the whole street. While, this action was well intended, but instead this created a polarizing argument both on the street and across social media.
I do wish that people in general be aware of the different degrees of food allergies. When we ask for food related information at restaurants, we get everything from eye rolls to very empathic concern. Overall, we ask that people just accept other's differences.
Miggy: If you could say something to the mom who just starting on this journey of severe allergies, what would you say? What would you say to yourself if you could go back in time?
Liz: I would say that this journey is not easy, however, you do not have to live this special needs alone. Your primary job is to keep your kid safe at all costs. You will seek opinions and advice from everyone. The medical community, along with all of us, is learning how best to adapt to this medical condition. There are a number of positive medical research treatments out there to include OIT and even the Peanut Patch to help with treatment.
The best advice is to take one day at a time. Take time to breath. You are not alone. There are others in the food allergy community like FARE (food allergy research and education) http://www.foodallergy.org/, various informative blogs, and Facebook support groups for both education and sharing advice.
Miggy: What is the biggest lesson you’ve learned since becoming Wyatt's mom?
Liz: Wyatt has taught us that life is precious and not to be taken for granted. We believe that Wyatt has this medical condition for a reason, not by happenstance. We trust in God that Wyatt's future is full of happiness and life. Yes, we want Wyatt to be safe, but we do not feel the need to change Wyatt to be something he is not. Overall, we have three very happy and mostly healthy kids. We are truly blessed.
Liz, that was fantastic,Thank you so much! I'm so glad you explained that there are different degrees of food allergies much like burns and that your son has a 3rd degree level reaction to peanuts that would kill him without medical intervention. This is really important to understand! As healthy and typical as your son is in every other way, that little difference is a mind-boggling big deal. I will say that I was initially one of those people who sort of rolled my eyes at the idea of schools having to be peanut free (even though we've never lived in a school system that was peanut free). Now after doing a few spotlights of children with severe allergies I would gladly follow any such guidelines in our school district and would help to spread education about the importance of these guidelines! If any parent put themselves in your shoes for even a second, I can't imagine anyone not supporting a measure that could literally be the difference between life or death. The oft repeated phrase, "it takes a village" takes on a whole new meaning in the world of severe allergies. Thanks again for sharing your story and your son Wyatt with us! Lots of love for you and your whole family.
I hope you guys have a FANTASTIC week before Thanksgiving. I'll be taking next Friday off for the Holiday, but I hope you have a great time with your loved ones. I've got some great spotlights in the works, but of course I'm always looking for more opportunities to share your stories. So please, if you know someone or would like to participate please email me at thislittlemiggy at gmail dot com.
Have a great weekend!