Another child lost to food allergy….

Ammaria Johnson, an elementary school student in Chesterfield County, VA died Monday at school after suffering a fatal allergic reaction at school. She was only seven years old. Ammaria’s death shook the food allergy community to its core. How could this have happened? What precautions were taken at her school? What emergency directives were followed, or not followed? Read the latest story here. However, not enough information is available yet about what exactly happened. What we do know is that this little girl, who had a peanut allergy, ingested a peanut product and suffered a severe allergic reaction. There isn’t enough information about exactly what happened after that, but allegedly the school didn’t give medication to counter the attack, the school apparently called the mother first instead of 911, the school allegedly denied the mother’s request to keep Ammaria’s EpiPen at school in the event of an emergency, and after what seemed to be a series of missteps, the girl died shortly after at CJW Medical Center. I’ll say it again, there isn’t enough information available about this tragedy, but one thing we know for sure is, Ammaria’s death, like most food allergy deaths, was preventable.

The journalist in me won’t make assumptions until all the facts are out. But I will say that if the school did, in fact decline the mother’s request to keep an EpiPen at school for emergencies, they will be held responsible for negligence and not having an appropriate policy in place for children with severe food allergies. I read the fine print of their “policy” but if a clinical aid refuses the only medication that could save a food allergic child’s life, than all the rest of their policy is crap and BS. The right meds for these kids need to be in the right places at all times. No exceptions.

Which brings me to my son’s school and where they keep EpiPens, medications for children with food allergies. We are fortunate to have a school nurse. She has a big cabinet filled with resealable plastic bags of medications for children with food allergies. The nurse is located down the hallway from the cafeteria. In the event of an emergency in the lunchroom, it would seem there would be enough time to get a child down to the nurse, go through the packs of medications to find his/her specific bag of medication, administer one EpiPen for 10 seconds, maybe two if the first one doesn’t work, call 911 and pray the child responds to the corrective action.

However, I never felt comfortable with this process, because it is assuming everything will go exactly as planned, and that the child’s allergy will be recognized quickly enough to escort the child down to the nurse. I’ve always requested that a second EpiPen package be stored in cafeteria with the lunch monitors who handle the payment/check in. That person is trained on the EpiPen, and the monitors know what to look for in the event of a reaction. This emergency protocol is labeled in John’s 504 Plan. Today, as I was picking up John for his allergist appointment, I asked the office to double check to make sure John’s EpiPens were still stored in the lunchroom. The office confirmed that it was, and out of curiosity I asked if there were any other medicine kits stored in the lunchroom. The nice lady smiled, and responded…”No. Just John’s.”

The proposed School Access to Emergency Act “would enable schools to maintain a supply of epinephrine and enable staff to administer an Epipen to a student having an anaphylactic reaction.” Please read this article for more information about why it is important for you to contact your local congressman or woman for support. In my opinion, every LUNCHROOM should be equipped with EpiPens in the event of a food allergy emergency. There are a number of factors that could affect the child getting the right rescue medication at the right time. We encourage our children to always have their medicine kits on them 24/7, so why wouldn’t we have them available in the lunchrooms, where there is the most risk to these kids? Something to consider when drafting your child’s 504 Plan.

After seven hive reactions in two weeks, I took John to his allergist today to determine why. No new allergies were detected. John’s allergist said recurrent break out of hives is actually common in kids with food allergies when they are exposed to certain viral infections. As long as there isn’t any other respiratory or oral symptoms, it should be fine to treat John with daily antihistamines until the virus has worked itself out. It was interesting to note that John’s skin test and blood result for peanuts is still greater than 100 (KU/L), class 6 (highest class possible), combine that with John’s asthma and, according to John’s doctor an anaphylactic reaction could occur within 1-3 minutes. 1-3 minutes….is all it would take for my son to die if he didn’t have his EpiPens on him. Another variable is possibly how much peanut product would be ingested….the more ingested, the faster the reaction. As we all know, peanut traces could be in breads, cookies, snacks, etc. THIS is the reality parents of children with food allergies have to live with every day when we send our kids out the door. I used to think when John was in preschool that it would get easier when he got older. But I am finding that it is much, much harder. At the end of the day, John desperately wants to be a normal kid, who hangs out, plays sports and goes to 7- 11 with his friends to buy Gatorade. I get it, and I’m letting go as much as possible. But after hearing of another food allergy death…it just makes it all so hard to deal with.

Children are a great gift to us all. As parents we love them more than our own lives, and would gladly give ours to save theirs. We’re fiercely protective of them, and that will never go away. Keep fighting the fight, there’s much more work to be done in awareness, advocacy and prevention. Don’t take no for answer, ever, and believe that your child’s rights at school are just as important as any other child. Believe that homeschooling doesn’t need to be the answer, that your child can adjust happily and even thrive in any environment. And most importantly, believe in the power of YOUR voice, and empower your child to feel the same.

In the meantime, my prayers will always be with Ammaria’s family and loved ones, and hope that we can all help to prevent another child’s death from food. Here’s a great list from FAAN about the Anaphylaxis Do’s and Don’ts. Please read and share.

xo

 

35 Responses

  1. I’d be happy if I could find a school WITH a lunchroom. For some reason I cannot fathom, in my district, all kids eat in their classrooms. My kid isn’t at risk of death, but one flipping bread crumb makes him sick for literally weeks. To make matters worse, he’s got autism and puts everything in his mouth. So homeschooling does need to be our answer. At least until I can convince the district to have a food-free classroom.

  2. We are in the neighboring county to Chesterfield, so this has literally and figuratively hit us close to home. My son’s 504 states his medication must be with him at all times. He has Epi-Pen and Benadryl in his backpack on the bus, in a Tote bag in his classroom that follows him to art/music/pe/lunch, and in the clinic. It also states that everyone in the school be trained on epi-pen. It doesn’t matter how much medicine is around if the adults don’t know how to use it or WHEN to use it. I fear that is the case with Annmaria; the staff didn’t know what they were looking at until it was too late. Which scares me to my core. No matter how much prep and info they have, will the adults responsible for my child know what to do when it matters?

  3. Stories like this just bring tears to my eyes and then I am so very grateful that our school is so vigilant and we have not 1 but 2 nurses – 1 of whom is the head EMT in town. All that said, its a reminder that we can just never be too careful or get too comfortable – while the lesson of empowerment speaking up for oneself are lessons that will stay with our children and be used throughout their lives – it’s so challenging to have to teach it in such a life or death way. My prayers are with this little girls family.

  4. This whole things truly is a tremendous tragedy.
    Here in northern virginia, we have information leading us to understand that classroom parties and celebrations and crafts that involve food products are higher risk situations than cafeterias –
    I actually think that, in addition to cafeterias, every classroom – or at least hallway – should have a wall-mounted epi-pen available to teachers.

    And wouldn’t it be great if teachers who have students with known allergies would attach a card to the lanyards they wear with signs & symptoms of an allergic reaction?

    Heartbroken for this child and her family and classmates.

  5. What a tragedy. This is why my 8 year old daughter carries her medications in a purse on her person at school. I am fortunate to have her at a school that understands food allergies enough not to fight me on this. (I also have a second set with the school nurse.). Her reactions have not been immediate – she has had her tongue start to swell up to an hour after first ingesting the allergen. The reason for keeping it on her person was made clear when she had her last reaction – her tongue swelled, and she couldn’t talk, but she could get out her medication so that her friends and teacher knew what was going on. We will all be hugging our FA kids a little harder today. Prayers for the family who lost theirs to this disease.

  6. We homeschool for other reasons besides food allergies and it makes it a little easier. However, we stopped going to church because they serve animal cookies and let the children have their own drinks in Sunday school. It is even hard for us to go to the park where children are eating and drinking while playing. My son is 3 years old so it is discouraging to me to hear it doesn’t get any easier as they get older. You are doing a fantastic job. You are doing all you can to keep your son safe and encourage the rest of us with children with food allergies to keep fighting for their right to be safe. Even though I home school, I want all children to be safe in whatever their environment.
    I feel so sad for Ammaria’s family and will pray for them.

  7. When I first read this story, I had tears in my eyes because I was at school. I am a teacher in Virginia as well, and there are several things about this story that do not make sense. I have taught children with food allergies and I know how to use an epi-pen. We put signs on the doors of the rooms with peanut allergies, and we keep medicine here with our nurse. If it were my classroom, I would request it be kept with me as well as with the nurse. Something doesn’t sound right with this situation, and it is so sad that the child passed away because of it.

  8. This is incredily sad and scary. My daughter has PN/TN allergy for 5 years now, she’s in 3rd grade. The original reporting left too many questions. If the mom brought in epipens to the school and was told no, keep them at home. Who would tell her that? What is a “clinical aid”. I also think that schools should have their own supply of epipens. I always bring in new ones in September. Can’t have enough of them.

  9. As soon as I read about this sad news yesterday I was looking forward to your blog and others’ comments. I suppose they provide me with a sense of community in which I can grieve…a place where others understand my sadness and deepest, darkest fear. With each child that dies from this a part of me dies, too. It could have been my son, and very well might be my son in the future. It’s as though a little part of each child that suffers from this is my own. My heart breaks and tears flow. I know I’m not alone.

    Like many of you, we had yet another scary trip to the ER this week with swollen lips this time. No matter how careful we think we’re being, every so often we’re reminded that we weren’t careful enough.

    It’s important that we turn our grief into productive energy that will work toward making the world increasingly safe for our children, so that we advocate for our children’s safety before tragedy occurs rather than after. You’ve done a great job of doing that, Kelly. Thank you so much for not only sharing your excellent recipes, but especially your thoughts and emotions which are so beautifully expressed in this blog. You are my inspiration. Please keep up the outstanding work!

  10. The fear that this child experienced when no adult at this school would/could help is too painful for words. I find myself crying for her because her school environment did nothing to protect her and prepare for an emergency. There’s no excuse; information and education on anaphylaxis is readily available for anyone who needs it. School personnel should forever be ashamed that they were the ones she and her parents trusted.

  11. Is your son allowed to carry his Epi-pen on him at school? We are in Indiana and my daughter is allowed her Epi-pen and Benadryl on her at all times. We also have another kit in the nurse’s office.

  12. Hi Kelly, I have come across this blog before as my 5yo has a peanut allergy, however we recently moved to wilmette and I saw the article in the paper so I revisited your blog! As My son is close to going to kindergarten next year I am happy to hear of the improvements in the schools. This story just makes me more nervous as Owen gets older! I haven’t looked into the specifics of each school yet and how their policies are for classrooms/foods yet. We are in mckenzie district!
    I can’t wait to follow your blog more closely! I am also a nurse and worked on the food allergy study at children’s memorial so I also even before I knew Owen had the allergy tried to educate family and friends, as we saw so many families with many severe food allergies…thanks for all your hard work!
    Aimee

  13. Why don’t you put some of your boundless energy and resources into finding out why there are so many super allergic kids and focus on prevention and treatment. That would be making the world a better place.

  14. This is a heartbreaking story.

    In the last few weeks I’ve been working on putting together a proposal for food free classrooms, so I’ve been compiling data to support it. Thought I’d share some of with you all.

    “According to the U.S. Peanut and Tree Nut Registry, 79% of recorded allergic reactions to nuts occurred in the CLASSROOM, usually as a result of contact with peanut butter during class projects. Numbers vary, however, by state. For example, Massachusetts schools reported that 46% of food allergy reactions occurred in the classroom compared to just 9% in the cafeteria.”

    “Food allergies can develop at any time, and about 25% of serious reactions occur in kids with no known allergy.”

    Please, please, please contact your senator to support the School Access to Emergency Epinephrine Act.

  15. We are looking for guide lines to develop a support network for kids and their families with allergies in the schools here is Southern California. Do you know if any exist? Do you have any tips for us on starting a support group.? Our particular allergy is to peanuts but all children must be protected at school.
    Together we can bring life threatening allergies into the public eye. We must do this ourselves, just as you have done.
    Thank you so much. Judy

  16. I was not comfortable with just the nurse thing either. What if the nurse is in the bathroom when it happens? What if it gets misplaced? What if the kid is not at lunch, but at recess, like this girl supposedly was, and the reaction happens too far away? Our school has a pouch with my daughter’s epi, benadryl, and an emergency card with doctor’s # and instructions on how to administer. Every teacher in her school is trained. The pouch stays in the classroom and then travels with her.

    Everyone has a different threshold for comfort and you have to feel your child is safe. That said, this act is very important. What about the kids who don’t know they have allergies? It’s so easy to administer an epi when in doubt, it can’t harm them if you do use it, and since it’s so life saving why doesn’t every school have this in their emergency/first aid kits? It’s about time. It’s heartbreaking to hear about yet another death that could have been avoided if people were better educated.

  17. This is a very sad situation and we will be praying for her family. Certainly the parent stress surrounding school procedures, medicines, lunch time, substitute teachers, field trips….all make the school process very difficult, especially with food allergies.

    The topic of dealing with schools and school administration is one of the most frequent topics during our monthly support group meetings (http://www.ocfoodallergy.com).

    Once again….let’s make sure that we take the time to pray for her family and pray that her death can bring about positive change for those children that battle food allergies daily.

  18. Words cannot express how heartbroken I am to hear of this story. As parents with children with food allergies, we know only to well, how personal this story is to all of us. Both my sons’ carry epi pens on them. My son in grade 8 has an epi pen in the office and one in the classroom. On field trips, the epi pen goes too. (I am always on those trips and bring one myself) The teachers are all trained in the use of an epi pen. My son in highschool has an epi pen in the office. All his teachers have been informed of his mulitple food allergies and are trained in the use of an epi pen. I have also been in the grade school training both my boys classrooms on the signs and symptoms of an anaphylactic reaction and how to use an epi pen. Knowing my boys classmates are also educated and trained helps to ease my mind…especially when they head to highschool. I gave my first presentation to my eldest son’s grade 6 classroom and then again in grade 8. This year I gave my presentation to my youngest son’s grade 8 classroom and was asked to present to the grade 7′s as there was a student with a peanut allergy. I was so pleased with the reception. Advocating and educating those around our food allergic children is key…I am so thankful for the cooperation of my boys’ schools. As schools are a place of education…it seems only natural to me that schools be open to the benefits of the education of anaphylaxis and epi pens in schools and classrooms. Susan H. @ The Food Allergy Chronicles

  19. We are so very sorry to hear of this family’s tragic loss. Our prayers and thoughts are with them now and always. It sounds like, in some states, children can carry their epi-pens on their person. This is not true in Colorado (at least in our school district). Epi-pens in the lunch room would be a great idea, a start. But, always hoping that someone sees the signs and can react and get to the medicine and the child soon enough were too scary for our family. We also chose to homeschool in November and are all so very glad we did, especially after reading this story. Thank you for sharing this with us. May prayers be with all food allergy children and adults this New Year – God Bless!

  20. Pingback: A Tragic Loss of a Child with Food Allergies: Amarrie Johnson | The Food Allergy Chronicles

  21. What happened to that girl is a shame. What’s almost as bad is what is in the food they eat every day at lunch when they buy from the school. Disgusting.

  22. Kelly, so thankful that you bring up the issue of the epi pens needing to be present. We can all do so much to try to avoid a reaction, but the MOST IMPORTANT thing of all is having the epinephrine immediately available, and someone there trained to administer, if necessary. I just completed a legal battle with my school – a long and drawn out process – but now have excellent 504 accommodations that include having the epipens passed off to staff during the day as my daughter moves through school. The teachers are now all trained in recognizing the symptoms, they know who my child is, and they are all trained in the correct way to administer the epinephine. And I am so happy that many of our accommodations will protect other children with food allergies, as they require the school to implement school-wide food safe policies.

    Parents, please don’t give up. I almost did because I was so worried about maintaining a good environment for my child at school and not wanting to get these folks angry at us, but we were able to work through this process with mutual respect, and in the end it was really worth it because now people are really prepared in the event of an emergency. Nothing is more important than that!

    I’m so very sad to hear about this tragedy. I can’t even allow myself to really think about this, it’s too upsetting. I am just going to try to keep educating folks, and I hope you continue the good fight as well!

  23. Absolutely heartbreaking. I can’t begin to put into words how sad reading this and the news article made me. Those affected will never be the same.

  24. This story is indeed sad and my heart goes out to the parents and family of this child.

    I feel especially sad since I know something can be done about allergies and kids don’t have to suffer by getting sick or even having a special diet. Although, all Americans should have a “special” diet, like the described in Dr. Terry Wahl’s TEDx talk I watched recently (http://tedxtalks.ted.com/video/TEDxIowaCity-Dr-Terry-Wahls-Min;search:tag:%22tedxiowacity%22). This is great information for EVERYONE!

    I eliminated my food allergies (one lead to anaphalaxis) by seeing an accupuncturist and chiropracter who practiced two methods for getting rid of allergies: NAET, or Namboodripod’s Allergy Elimination Technique, and NMT, NeuroModulation Technique (quicker and more effective).

    Since then, I learned NMT and am now helping others eliminate their allergies, not just to food. I find there is always allergy behavior towards the body’s own tissues, something that will lead to tissue degeneration (and “degenerative” disease) in the long term.

    Isn’t it worth it to check out ways to eliminate allergies to maximize health – for now and for the long term? Isn’t it also worth it to eat whole, unprocessed foods that are grown, not opened from a package full of chemicals?

  25. I felt terrible when I heard a seven year old child lost her life due to a preventable food allergy reaction. After the shock a parent from my son’s class and I decided to talk about this in our preschool. We did a presentation on January 18.

    We talked about how important it is to raise awareness and to create supportive communities. Policies and action plans are must haves but individuals are the ones who implement them…We talked to a group of about twenty parents. We only asked for ten minutes of their time, they all gave us their utmost attention, empathy and sincere concern. We received great suggestions. Questions, recommendations from other parents and the underlying tone was so very well received. Revisions and allergy awareness starting at open houses were underway before I left the room:)

    More than 12 million people have food allergies and the numbers are rising. Raising awareness, creating supportive communities are key to prevent a severe allergic reaction from happening. I would like to share the link so that every one can view and share the presentation. I relied on FAAN’s web site to put the presentation together and the facts and numbers were an eye opener and helped to get the attention of every parent in the room.

    Be a pal, click the link, learn the facts, share the link:

    http://prezi.com/vijzkbnuh6lz/early-childhood-parent-comittee-food-allergy-presentation/

    Thank you,

    Ayse

  26. This is so sad and incredibly scary. Schools and school bus companies all over this country need to hear this story. I told my school that my eight year old was going to carry his epinephrine in his backpack and though they did not object I was prepared to take it all the way to the courts. I fear that school bus drivers will not be trained or carry epinephrine until a child dies on a bus. What a horrible statement it makes that rather than a preemptive strike, our school systems must wait for a child to die before taking action.

  27. I lost my father to an anaphylactic reaction 16 years ago. So much has changed with the Internet and awareness. No one knew what to do back then. No one in our family had even heard of anaphylactic shock before he died. Thank you for doing your part to educate the masses.

  28. Pingback: Latex Allergy : A Healthcare Worker Problem? | Histamine Intolerance

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