The Importance of EPI FIRST, EPI FAST - The Perez Family Story.
By Gerardo Marcano March 2nd,2021
Gerardo: Nice to Meet you Lourdes. On behalf of the Elijah-Alavi Foundation, thank you for extending your time, and for talking with us. My name is Jerry. I have been given the pleasure of hearing a little bit about your family already. Can you tell us a little bit about your family, and in specific, Liam?
Lourdes: We are a family of four. It is me, my husband, my eldest who is turning four, and Liam. My daughter Lylah was our first experience with food allergies. She had a mild reaction to peaches.She has since, outgrown it. Her reactions were moderate; hives on her face, but not anaphylaxis. We ended up having to take her to the emergency room, at the direction of her pediatrician.
With Liam, it was totally a different experience from day one. He was just...full blown eczema. I was told by the pediatrician that it is just baby eczema; that it would go away. My gut knew what it knew; that it was more than that. With Liam, up until now, he has over 25 different food allergies. It’s has been life changing.
Gerardo: May I ask what type of allergens ?
Lourdes: Off the top of my head- he is allergic to wheat, dairy, eggs, mustard, to several seeds, shellfish, some tree nuts, random foods such as tomato, sunflower, grapeseed oil, canola oil, ...He has so many. I think it may be easier to list things that he is not allergic to. He also has a lot of food sensitivities, as well...so it's a lot.
Gerardo: It definitely sounds like a challenge to be able to find things that Liam can eat. And getting the nutrition that he needs. In addition to allergies, does Liam have any additional related ailments, such as asthma ?
Lourdes: He does not have asthma, but he began to be covered with severe eczema from about the time that he was a month old. He also has a skin condition called Cholinergic urticaria. When his temperature rises, he starts to break out in these welts. It was confirmed by two dermatologists, and two allergists- that the severity that he has it, is kind of rare. The condition is severe enough that his body can trick itself into going into anaphylaxis. We have to keep him cool at all times, and cool him down immediately. This has brought about a whole new set of challenges. We keep him in cold socks at night. We always have to check on him, to make sure that he is not too warm.
Gerardo: This definitely sounds extremely stressful. How does this affect the dynamics with your family, or just your everyday routine ?
Lourdes: Honestly, we were really used to being a tight knit family. We are family oriented. We are always used to being with each other and bonding. My husband and I both have big families. When the food allergies started to happen, I started to have a lot of fears surrounding people touching him. I was concerned about family members having allergens on their hands, and touching his face. He had a lot of raw skin. It kind of tore our family apart. We had a few people in our corner, but our old school family thought we might be exaggerating a bit. There was a lack of education, so they saw it, as not being as big of a deal. They didn't see it as being (as serious) as to the point that he could die. The good thing is that I have a really supportive husband; it's been able to bring us closer.
Gerardo: Thank you for sharing that. I come from a close knit Latino family. The first thing that we want to do is hug and touch the child. Culturally, it may not be something that we always understand. We are not necessarily taught about severe allergies, or circumstances in which it may be detrimental to touch or hug a child if they are experiencing allergens. I am glad that this experience has brought you and your husband closer.
I remember reading from an Instagram post you mention that you seemed alone and clueless a year and a half ago. Can you elaborate on that?
Lourdes: The first year with Liam was very lonely. He pretty much was kept in a bubble at home. His pediatrician told me that he had never seen a case as bad as Liam’s. I was new at this. I tried to do the home remedy thing. We tried changing the diet. We switched to an all vegan diet, but then he started to become allergic to foods made with legumes, or wheat. It got lonely because it felt as though I didn't have anyone in my corner for so long. It was difficult trying to keep his diet diverse, and not knowing anyone going through the same (challenges) as us.
Gerardo: What are some of the things that you found that do work for Liam? What have you found that was comforting?
Lourdes: In terms of medication, he is on a low dose of immunosuppressant cream. It was the only thing that seemed to work for him. We tried steroid creams, which in his case, seem to make it worse. It ( the immunosuppressant cream) helped so much. He went from being in the hospital with staph infections, and being on IVs to recovering within 5 days. What has been so helpful for me, was finding a food allergy community through instagram. It helped to connect use to other moms, and other families that were experiencing food allergies, at a step ahead of us.
Gerardo: It is wonderful that you were able to find the support that you needed through online communities. I know this may be a sensitive question, but have you ever had to use the auto-injectors (EpiPen) on Liam?
Lourdes: Yes this is honestly why I feel so attached to the Elijah Alavi Foundation. I feel that because of EAF my son is here today. My husband was the one who took the action to administer the EpiPen. This occurred a couple months after he turned one. We were cooking dinner and I gave him some rice. At this point we did not know that he was allergic to mustard seeds. I drizzled the rice with barbecue sauce on top, not knowing that it contained mustard seed. He put the fork to his lips. Immediately, when the fork touched his lips he looked at us wide-eyed and dropped the fork. He instantly began to scratch his nose and his face. My husband noticed. Up unitl this point, Liam never had such a strong reaction. I gravitated towards just getting Benadryl, while keeping an eye on him. My husband quickly took Liam out of his chair. Liam put his head down and he just started screaming. I told my husband to lift up Liam’s head, and when he did we noticed that his lips up to his nose were super bubbled, and his eyes were swollen. The first thing that I thought about, was about what had happened to Elijah. I realized at this moment, that if we did not act quickly that this could go sideways, very fast.
I remembered the post from the Elijah Alavi Foundation that mentioned Epi- first and Epi-fast. Even though I had seen an allergist up to this point several times, I don’t remember them ever putting the emphasis on how important it is to react so quickly. It only took a matter of seconds for Liam to snowball down. We called the paramedics.I remembered from an EAF post to keep track of the time on my hand, in the case that we would have to administer a second EpiPen. At this point Liam was not getting any better.The paramedic on the phone advised me that I should wait before administering the second EpiPen. I told her no, I’m sorry my son's life is in my hands. I'm going to administer the second EpiPen. I ran out to meet the paramedics. They rushed us into the ambulance. They started to ask us several questions, such as, “What is he allergic to?”, “What did you give him”? , and I just blanked out. In the stress of it all I froze and all I could keep saying was his allergies are in his bag. I kept repeating his weight and his birthdate, his name. The paramedics came over to me. I was holding Liam he called out for Liam, and Liam just went limp. Liam stopped breathing at this point. He had turned blue. At this point everything was just a blur.
They laid him down to administer a second EpiPen. When they gave him the second EpiPen he kind of took a deep breath. When he took that breath he let out a cry which was music to my ears, but was also the worst sound that I had ever heard. He began to choke on his own vomit. He started to aspirate and projectile vomit. When we got to the hospital it was chaos. They swaddled him in order to be able to give him an IV. They gave him Pepcid which is used to treat anaphylaxis but we didn’t know at the time that he was allergic to Pepcid so he started vomiting and broke out in a rash. He was given a double dose of Benadryl and he fell asleep. He was on oxygen at this point. When the doctors came in they mentioned how hard it was to get a patient back once they became unconscious as was the case with Liam, it was a miracle. I feel like I owe a lifetime of debt to the Elijah Alavi Foundation for the information that they provided to me to act so quickly because you never think that it’s going to happen that fast.
Gerardo: Thank you so much for sharing and answering these triggering questions. I want to take a moment with you now to just take a breath.
Gerardo: What I’m hearing from your story is that in times like this, involving extreme stress, fight or flight kicks in, and sometimes we don’t know exactly what to do. We could only do our absolute best. I am so grateful that, due to you and your husband's fast action, Liam is still here today.I know that you touched upon your family and support, since this horrible ordeal, have you been able to find more support?
Lourdes: My parents, my mother-in-law and my immediate family started coming around. This ordeal created a turning point. They realized that it was serious. It became a reality to them that he could’ve passed away, it wasn’t just an exaggeration or something that I was creating in my head. At that point they started to reach out more to see if there’s anything that they could help with.
Gerardo: I’m glad to hear that there was a silver lining to this event and it garnered you more support and your family.
How has it been with finding support? Are there any family or friends who do not understand, and do you have to continue explaining to them about Liam? As far as adjustments with food and your family, did you have to make any adjustments at home from eating certain foods and nonfood item products? How did the family adjust to the changes?
Lourdes: We raided the kitchen and threw nearly everything out.We got rid of allergens in the house in specific anything with mustard seed, such as barbecue sauce and gave away food. My daughter's food, we keep really high up in the cabinet where Liam can’t reach it. Liam is two now and he has learned to open up the fridge. My daughter drinks soy milk and he’s allergic to it. We have a latch on the fridge so that Liam can’t get to the soy milk.
Gerardo: Have you had to make adjustments to your diet or the food that you and your husband eat as well?
Lourdes: Yes definitely. I have been breast-feeding Liam since he was little as soon as I received a lactation consultation, I was advised to remove certain things from my diet to see if it made a difference which it did. Anything that he’s allergic to, my husband and I, don’t eat it either. When it comes to my daughter, her high chair is isolated from Liam, and after she eats we wipe everything down.
Gerardo: Many people are always wondering about the dads being involved in understanding and managing food allergies.Thank you for sharing about the many ways that he supports, and is very much involved. I wanted to ask you some questions about daycare.Is Liam currently in daycare? Or does he have a childcare provider at home?
Lourdes: I am the sole provider. I’ve been taking care of him since the day he was born. I put nursing school on hold to be able to take care of him. He has so many allergies at this point I’m not at all comfortable with leaving him with another healthcare provider. I’m genuinely fearful at the minute I turn away something may happen. We already made a decision that we are going to homeschool in terms of daycare; I can’t get past that.
Gerardo: What are your concerns about having Liam in school? Do you think the teachers understand the severity of food allergies? Is there a lack of training and understanding?
Lourdes: I feel that there is a lack of training and understanding when it comes to anaphylaxis in schools. I know people know what anaphylaxis is, but I don’t think that they realize how harmful it can be and that it can take someone’s life. You hear stories and statistics about children in schools being bullied with their allergens and many times at the hands of their teachers or providers. It’s scary.
Gerardo: Thank you for sharing so openly and candidly with me. How has COVID-19 and this pandemic affected your family, and how you keep your family safe ?
Lourdes: First and foremost I completely panicked when I heard that people were rushing to go to the stores and load up and all the foods.Liam’s safe foods include rice, carrots, potatoes. When I went to go buy his safe foods everything was gone. He drinks nothing but oat milk. We had a whole team. Family members, such as my cousins and my sister-in-law, were able to grab things in the stores to ensure that we had them. It was a team effort to make sure that Liam had the safe food that he needed. The pandemic has given me some time to adapt to his needs. I’ve gained a skill set now I know what to pack. I have a plan A, a Plan B and Plan C. We have learned to adapt.
Gerardo: Have you been able to find everything that you need online?
Lourdes: For the most part yes but I’m also very mindful to not order everything up because I’m thinking about the next child with food allergies that is going to need what I’m ordering.
Gerardo: These are interesting times that we live in that we have to think about these things. There is a lot of noise surrounding getting the vaccine. What are your thoughts about getting vaccinated?
Lourdes:To be honest in terms of Liam and, my daughter, Lylah, it’s a definite no for me. Everything that we’ve gone through I’m not 100% secure that it is safe when it comes to allergens. Right now I’m not sure how safe it would be, even for myself.
Gerardo: What would make you feel a little bit more secure about taking the vaccine should you choose to do so in the future?
Lourdes: I’m not too sure. I think right now it’s my own fear. I know that there will come a point in time in the future where I will have to make that decision. I think that ultimately the answer will be yes because my goal as a parent is to take care of my kids. I have to do my part to protect them, my husband also being that he is the one that goes out and is exposed to the public.
Gerardo: Your concerns are certainly warranted. COVID-19 has made it difficult for us to get back-and-forth to doctors appointments etc. Can you tell us a little bit about how it's affected doctors appointments for Liam and Lylah?
Lourdes: In the beginning it was the absolute worst. I feel that it’s one of the reasons that Liam went into anaphylaxis. He was scheduled to get an allergy test. When Covid restrictions came into place they canceled his scheduled skin allergy test. They were deemed non-emergency appointments. Preventative care got pushed to the side. The skin care test didn’t seem so urgent for them. Had this appointment not been canceled, we would have known about Liam‘s allergic reactions to Mustardseed. After we’ve had the incident with anaphylaxis and his severe eczema now the doctors realize how crucial it is for them to be seen. He is a top priority now for his doctors. We take all the necessary precautions to bring him to his appointments now such as making sure that he’s wearing his mask and that he’s covered.
Gerardo: Before we go, are there any parting words of wisdom you would like to share with parents with children with severe food allergies and parents without children with food allergies and or
Lourdes: One of the main things that I’ve learned along the way, is to not compare your journey to anyone else’s. A lot of moms out there, are optimistic and tend to be on the side of everything is going to be OK. I felt very guilty for not being one of those moms that was optimistic. I am not one of those moms that thought everything was going to be positive and all rainbows.Many parents have not had the experience of having to hold thier child’s lifeless bodies in their hands. It’s not always rainbows and sunshine so, for many of us; it’s very raw. It is OK to feel whatever it is that you’re feeling. Your feelings are always valid.
Gerardo: Your feelings are always valid. Those are very empowering words to hear especially for families that are fighting feelings of guilt for not feeling optimistic, feeling worried, anxious, or scared. Thank you again for taking the time out to speak with me today.
cite:Epi First,Epi Fast https://allergyasthmanetwork.org/news/emergency-epi-first-epi-fast/