Food Allergies: A Race to the Emergency Room and Why Labels Matter
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” ~ Margaret Mead
October 1, 2013, a 14 year old boy had an allergic reaction that would take his life. On the one year anniversary of his death, I sat down with his mother. Today would have been his 18th birthday.
Last year, after speaking with his mother in July, we began pushing Mylan to lower the price of EpiPen. On his 17th birthday, August 18, 2016, I first tweeted out the hashtag “#epigate.”
His mother reached out with a very urgent email: “Robyn, the price of Epipens are skyrocketing. Families can’t afford them. Can you help get the word out?”
I had written about it before, in the fall of October 2015. I was stunned. Here, she had suffered the unimaginable, the loss of her teenage son, and she was asking to help others. Where does a love like that come from?
The heart of a mother. It stopped me in my tracks, because countless parents have reached out over the years. I’ve sat with those who have lost their children to a food allergic reaction. They don’t stop loving that child just because he or she is gone. They put that love into action.
And as I began sharing this, focusing on the meteoric increase in the price of Epipens, up almost 500% since 2009, other parents began sharing their stories, too.
So, on what would have been Gio’s 17th birthday, we began the campaign for #epigate. In the 12 months since, Mylan released a generic, the FDA oversaw the approval of Adamis Pharmaceuticals epinephrine device, Auvi-Q returned to market, EpiPen’s market share dropped from 94% to 70%, a Congressional hearing was conducted into their monopoly and so much more.
So we are sharing the story from his amazing mother again on Giovanni’s 20th birthday.
A mother does not stop loving her child because he is gone. If Georgina is any indication, she loves him more.
Please meet my beautiful friend, Georgina. Her story is below:
When Giovanni was around 18 months old, I made chicken with a peanut sauce. After one bite, Giovanni began to get hives, his eyes swelled…. I called our pediatrician, who told me to give Giovanni a dose of antihistamine and bring him in. Once there, our pediatrician said Giovanni must be allergic to peanuts and advised me to keep an eye on him and to give him antihistamine as directed. His symptoms did not get any worse that day, and we left with a referral to an allergist.
After going to the allergist, Giovanni was diagnosed with allergy to peanuts and other things. I remember the nurse giving me a prescription for antihistamines and an epinephrine auto-injector and showing me how to use it in case of an emergency. I wasn’t given a food allergy management plan. I don’t remember there being any sense of this as a life-or-death situation – just a diagnosis, prescriptions, and the recommendation that we follow up with our pediatrician.
So from then on, that is what I did. Giovanni’s pediatrician was his “go to” doctor for everything. When we asked about seeing a specialist, our pediatrician stated that he would treat Giovanni first.
Giovanni had a few allergic reactions to peanuts. We never thought these reactions were severe. He would usually vomit, get some hives, and have a bit of scratchy or tingly throat. After a dose of antihistamine, symptoms seemed to calm down and go away on their own. Thinking back, these reactions would be considered anaphylaxis, and were severe.
I followed up with the pediatrician, who said I should give Giovanni antihistamine since his reactions were mild, and he should be okay. We were never told that epinephrine must be used for certain symptoms, only that it could be used if we really thought he needed it. But, since he never had a bad reaction, I didn’t think he needed it. That was the extent of our anaphylaxis management planning.
A Severe Reaction
On October 1, 2013, Giovanni and I were settling in early, happy that homework was finally done early, dinner and chores were done, and we were going to be able to enjoy movie night together – just him and me – for the first time in a while since school had started. Giovanni had just started at Holy Trinity High School, so homework, studying, and sports left little time for relaxing and leisure. We popped the movie in and had our snacks ready. One was a snack mix of mini cookies, pretzels, almonds, and M&M’s. I usually always bypass the full food label and go right to the bottom of the ingredients where they usually have an allergy disclaimer. I had read the back of the bag, and all I saw was “MAY CONTAIN TREE NUTS.” Good, I thought, he is not allergic to tree nuts.
I gave Giovanni a few pieces of snack mix from the bag, but within seconds he was saying, “Oh no, there are peanuts in here!” I said he was wrong and read the ingredients again. Although there was no “peanut” disclaimer, it did actually have peanuts as a main ingredient. I just didn’t read enough! I don’t know how in the world I didn’t see it.
I immediately gave Giovanni a regular dose of antihistamine and said we should go to Premier Care, the after-hours clinic, just to be safe. Then I gave him a second dose of antihistamine just as back up. Giovanni was only feeling a little scratchiness in his throat and was giving me a hard time about getting dressed to go to clinic.
At this point, I should have called 9-1-1.
I said let’s go now, just to be safe. The epinephrine auto-injector was on the table right next to my purse, and Giovanni asked if he should use it. I said I didn’t think we needed to, that we should just get to the doctor. I threw all the meds into my bag and left. On the way out, Giovanni asked if he should vomit, since that is usually what happened in the past. I said if you need to then try, but he couldn’t.
Premier Care is about a seven-minute car ride away. Giovanni was still talking on the drive there. He had his inhaler with him and used it a few times. I kept telling him not be nervous, that he was going to be okay. We got to the office, and it had JUST closed. No one answered the door. Giovanni began to panic. We jumped back in the car and immediately started to look for the epinephrine auto-injector. We couldn’t find it.
At this point, he was still okay. He was still talking, just more scared now. I still was thinking we were okay. Now I had to drive to the emergency room, which was about another seven minutes away. All I could do was focus on getting there without crashing, I was beeping my horn and had my hazard lights on, taking every red light I could safely run and reassuring him every minute that he was going to be okay, that we were almost there, to just hold on another minute.
We were around the corner from the hospital when Giovanni must have felt something serious, and he said, “I can’t mom, I don’t want to die.” I was yelling, “No! No! That’s not going to happen. We’re here. Just hold on. I’m there in two seconds.” He didn’t respond.
I turned down the street to the emergency room and realized he was quiet. I grabbed his hand and said we’re here, but I realized he was cold. I looked at him, and he was blue. I started screaming and beeping as I drove to the emergency room entrance. There were people outside and I was screaming, “Help, my son has peanut allergy. He passed out. I need to get him inside!” They all ran over, and I remember about five of us struggling to get him out of the car. At the same time, emergency room staff came running out with a wheelchair, and we threw him in it. I was just screaming, “Help him, please! He is having an anaphylactic reaction to peanuts.”
Staff were running through hallway, yelling “We need a table now!” as I ran behind screaming “Please, help him!” That was the longest hallway ever. Then these nurses stopped me and took me into a small room while they took Giovanni away, and I had to wait and wait and wait. I had called my husband when we were leaving the house and told him what was happening and that Giovanni was okay. Now I had to call and tell him to get to the ER right away.
It was nearly an hour later when a doctor came out to brief us. She told me how they worked on Giovanni for quite a while, that his heart had stopped and that he had been without oxygen for about 3 minutes, but that they were able to save him. They told me he was on a respirator. I was finally able to see him. He was unconscious and needed to be transported to a pediatric ICU.
Giovanni was in a medically induced coma for several days in hopes of alleviating the trauma caused to his brain from lack of oxygen, but he got worse when they tried to bring him out of the coma. Doctors re-induced him into the coma in hopes that he would recover. But after three weeks of exhausting all measures to try to save him – after many hopes and prayers – Giovanni’s body just couldn’t sustain the injury to his brain, and he passed away on October 18.
I am grateful that I was able to hold my little boy in his bed, along with his dad and his sister, and was surrounded by every one of his closest family members, every one of them holding hands, holding each other up, while he crossed over to finally be in peace.
Lessons Learned
His physician was our pediatrician for more than 20 years. He didn’t take his allergies serious because he wasn’t educated enough about them. When I called him from the emergency room to tell him we are in the ER and why, he just said that there wasn’t anything to do, that the hospital doctors would be the one taking care of him.
The next time I heard from him was 10 minutes after Giovanni had passed away. My cousin had answered the phone, he was calling to see how he was. And didn’t really have anything to say. He never called, did not send a card, did not come to his funeral nothing. I still can’t believe it.
The night of his accident we were to be picked up from other hospital he needed to be transferred to hospital With PICU unit, the head nurse from this other hospital was (unbeknownst at the time) sent to be his angel, our angel. She told us she had just gotten back from an all day conference on food allergies and EpiPen importance. I have kept in contact with her and just the other day called on her to help me figure out how I can reach out to the entire medical field, re: American pediatric association. I am trying to figure out the best way to reach them to express the importance of global change of education to all physicians, nurses, ems, to follow one basic protocol when administering life saving information about food allergies.
Giovanni’s Legacy
When I asked Giovanni’s mom to tell me about her son, the sports he played and his friends, this is what she shared:
He was such a beautiful boy. So loving, caring, helpful. Loved life. He is so very much missed by all. His sister is all alone without him. His friends loved him so much. They still contact me from time to time to see how we are.
The one thing that is consistent when they speak of him is how beautiful his smile was, how he was so happy, always goofing off, making everyone laugh; he knew if you were having a bad day he would ask if you were ok and find a way to make you feel better.
Giovanni had just started high school at a private school, it was a big change for him but he loved it. EVERY single student in that school came to his wake/funeral. They all told us what an amazing kid he was, so many said even though they didn’t get a chance to actually speak to him they remember his infectious smile and that he was always making someone laugh.
Giovanni was an amazing athlete. Since the age of 5 he was playing baseball, soccer, football, basketball. His first love was football but a few years ago decided that baseball would be his career. He was known everywhere he went. Everyone wanted him on his or her team.
Right before the accident he had just gotten back from a travel team tournament that weekend. He was going to be a major league player no doubt. He was an honor student. A best friend, his father’s pride and joy, he was my whole life. He was my Protector, my son, My friend, my SOULMATE!
Communities from so many Towns have come together to remember Giovanni. In the town where dad is from, Our Lady of Peace school, one mom who has a food allergic child and is on the board had their food allergy policy revamped and dedicated to Giovanni. When Giovanni was in school at all times his friends/teachers all were very cautious and mindful of his allergies. His two very best friends were also allergic to peanuts /nuts and some other things as well so it was always a comfort knowing that he would be safe with them.
There was always a smile on his face. He was running from the time he woke up to the time he went to sleep. And even when he was sleeping he was still a restless sleeper. He was a star athlete. He was a best friend. He was the best brother. He was my little boy, my little man. He took care of me, and I took care of him. He was my friend, my partner. He was the reason I did EVERYTHING I did. He was his dad’s pride and joy. His dad is lost without him. He was an honor student. He knew to be helpful, to be of service, to be respectful. He knew how to seize the day and run with it.
Giovanni’s loss is felt not just here in our family, in our community, but all over the country. Giovanni’s loss is awful, it is heart wrenching, it doesn’t make sense. If it has taught us one thing, it is that we know we don’t want anyone to ever have to feel the pain that we feel.
What Do You Want People to Know?
We want to help educate and advocate for all families living with food allergies. We want everyone to know that food allergies are serious. Some people think it’s not that big of a deal, that food allergy parents tend to overreact, and for the simple and lucky reason it hasn’t yet affected them.
“How many more lives need to be lost to prove it is a big deal?”
Food allergies can mean life or death. In the past two months, it has become apparent just how true that statement is. Two more little lives have been taken in our community due to a peanut allergy. More people need to be informed about the dangers of food allergy, including healthcare professionals and parents. If you have a food allergic child, seek consultation with a board certified allergist who has expertise in food allergy. Allergist evaluation and periodic routine follow up are recommended steps in the NIH food allergy guidelines for caring for food allergic children. It is important to do your own research and be your own advocate. Find the very best doctor you can, and even if he’s a little farther away, it may be worth it to go those extra miles. If you advocate for your child and do the research, it is possible that you may be able to help your doctor form the best treatment plan possible for your child. If you are not happy with the treatment or feedback, then find a new doctor. Do not settle! If you reach a point where you are not comfortable with just your primary care physician managing your child’s food allergy, then you have to have a frank discussion with this provider about your desire to involve a food allergy expert in the care.
Know the Signs and Symptoms
The most important information we want everyone to know is that when there are signs or symptoms of anaphylaxis, administer your epinephrine auto-injector (such as an Auvi-Q or Epi-Pen). This is the first line of treatment for anaphylaxis! Always have your epinephrine auto-injectors available. It is wise to have two doses available because some people may need a second dose. Do not hesitate to use this when it is needed! It can save a life. Epinephrine use has virtually no downsides or bad side effects beyond increasing the heart rate and blood pressure, and possibly causing some temporary bruising and pain where the device was injected. Most importantly, make sure you have a written anaphylaxis management plan provided by whoever is managing your child’s food allergy. This must be reviewed until you know it like the back of your hand, and you are comfortable with the steps. The physician creating this plan must be able to clearly explain to you what symptoms require antihistamine, and what other ones can only be treated with epinephrine. It is your responsibility to master this plan, and be ready to act should the need arise.
If you should have to treat your child with epinephrine, call 9-1-1! Call your local ambulance service and tell them that a child is having an allergic reaction and may need more epinephrine. (An ambulance should be called not because epinephrine is dangerous but because the allergic reaction could be severe, needed to be treated with epinephrine, and may require more treatment). Even if you are unsure if your child needs the epinephrine, don’t hesitate. Don’t let fear take over. It won’t harm your child if it turns out not to be needed, but it will harm your child if you don’t use it, and it was needed!
You have some incredible goals. Will you share them?
I have many goals to conquer but educating people about this is at the top of my list And I will be heard if it’s the last thing that I do. Thank you for listening. ❤
Important Resources:
“May contain” labels on our food packaging are voluntary. The Food Allergen Labeling and Consumer Protection Act (FALCPA) was passed by Congress to ensure that there would be clearer labeling of food for the millions of people with food allergies. As of January 01, 2006, all food products regulated by the FDA must be labeled in a specific way to identify the eight major food allergens, but there are exemptions and loopholes.
It is painfully clear that not enough parents are aware of these exemptions and voluntary labels. To learn more, please click here.
Read the ingredient list and label all the way through. Do not rely on the “May Contain….” or “Contains….” statements at the bottom of the ingredient list. It is a voluntary statement and not required under the food allergy labeling law.
To learn more about the sign and symptoms of food allergies, please click here.
To learn more about the Food Allergy Labeling and Protection Act and what is voluntary and how to protect your loved ones, please click here.
To read Giovanni’s full story, please click here.
To help prevent another food allergy death, please share this.
To sign the petition urging an investigation into the skyrocketing price of Epipens that are putting lives at risk, please click here[/vc_column_text][/vc_column][/vc_row]
I think you really want to know more of what happened that day, but I needed to let you know why I was so unprepared for what happened on April 13th. Elena (10), Emily and I had gone shopping that day for a graduation dress at a mall here in Cincinnati. After buying her dress (which she wore out of the store) we stopped to have lunch at about 2:50 at the mall’s food court. We decided to have a sandwich at a place that we had eaten before (we considered it a “safe food” restaurant) because Emily, in fact, had eaten this very same sandwich many times before with no problems. Their website even shows that it is peanut-free except for two of their cookies. After having lunch, we walked through a new t-shirt shop where Emily fell, tripping over her shoes, and landing on her bottom. She laughed and got right back up. We continued shopping, going to a store where we were going to get Emily’s ears pierced. While we were in this shop, Emily mentioned that she was afraid she might have messed her underwear when she fell and wanted to check it out. She came back about 5 minutes later, did two puffs of her inhaler, telling me that she felt hot and did her face look red. I told her no, but maybe we should leave. She said that her new dress felt tight and that she wanted to change her clothes. I said fine. She took her clothes and went to the bathroom. Elena and I stayed at the shop looking at “girly” stuff.
