Back To School for a parent with a child who has a severe food allergy | Peanut Allergy

I am not a writer.  I really don’t like doing it.  I would much rather show pictures on the blog or chat with you than actually have to write.  ACK! So I will apologize in advance for the run on sentences and crazy stream of thoughts I am attempting to express!

Today was spent ordering prescriptions, talking to the pediatrician and school in preparation for my son, Gavin to start second grade.  This time of year causes a lot of anxiety in our house.  Starting school isn’t just buying school supplies, new shoes and a sweet new backpack.  My kid has a peanut allergy.  No, he doesn’t get sick to his stomach and get a rash.  He goes into anaphylactic shock.   Coupled with his asthma, it makes his reaction worse.   Within minutes he can go into cardiac arrest and his throat can swell, cutting off oxygen.  Without someone giving him a shot of Epinephrin right away, he will die.  The reaction is painful and traumatic.  Having seem him in a full attack, it is truly the worst thing I have ever experienced.  Seeing him swell like he had been beaten and his eyes sealed shut, barely able to breathe.  Poor baby.  He really didn’t ingest  it- he spit it out.  *I* gave him some peanut butter.  *I* did this to him.  He was almost 2. They said this was a warning and the next time would be worse. WORSE? How is that even possible? We had no idea he was allergic and everyone else in the family ate it.  The possibility that he could be allergic never even crossed my mind.  Ever.

When he is with me, I know that I always have his Epi-pen and I check everything to be sure that he stays safe.  But when school time rolls around, I am relying on his school to keep him safe.  Will the new teacher be overwhelmed with this information?  There are 20 other kids in the class she has to worry about. Will the parents make the effort to keep peanuts out of his class?  Will the students be supportive or threaten and tease him?  Everything is out of our hands and all I can do is pray he is safe.  It is a really a helpless feeling.  Most parents feel confident their child is safe at school.   Most parents heart doesn’t sink when their cell phone rings and the caller id is the school.  I feel sick answering only to find out it’s a bumped knee or tummy ache.  Yes, a wave of relief washes over me when my kid is just hurt or sick! We have been so fortunate and have never had a problem at school.  A report in the New England Journal of Medicine titled “Fatal and Near-Fatal Anaphylactic Reactions to Food in Children and Adolescents” indicated that four of the six deaths from food allergy examined in the report occurred in school, and were associated with significant delays in treating the reactions with epinephrine.  4 out of 6 DEATHS happen in SCHOOL.

And then there is bullying.  In a recent study published in the journal Pediatrics, of those surveyed, 45.4 percent of the children and 36.3 percent of their parents indicated that the child had been bullied or harassed.  As a result of the finding, the researchers recommend that both parents and pediatricians routinely ask those with food allergies about bullying, to reduce additional stress and improve life quality.  Stress and quality of life?  For a kiddo? Aren’t kids supposed to feel invicible and carefree? I thought my son is pretty well adjusted.  Except for the time a kid in kindergarten when a boy threatened to throw  peanut butter on him (turns out it wasn’t, but that that is beside the point!) we have been lucky there, too.  WRONG! I found out a few weeks ago that some of his friends in school, had been making statements to him.  Telling him they were going to put peanut butter on him at recess.  He said they were mean and it was scary.  He thought they were his friends.  It broke my heart.  How could I have not known?  Why didn’t he tell me so I could help???  He worried and carried his fear alone for months.  From the study “nearly half of parents surveyed (47.9 percent) were not aware of the bullying — although both the bullied children and their parents reported experiencing higher stress levels and lower quality of life.” An older study published in 2010 in the Annals of Allergy, Asthma and Immunology, said that classmates were the most common perpetrators, but more than one-fifth of the harassment came from teachers and other school staff.   Seriously?!?!  That floored me.  But then again, I have dealt with parents who think allergy moms are over reacting and the kids just need to deal with it.  Right.  Deal with it.  My kid now panics if something has peanuts.  This is new and scary.  Of course I want him to avoid it and not be near it, but his eyes looked like someone was holding a gun to him.  Which, I guess it is like that for him.  I just don’t like seeing him so scared and frantic.  I always stay calm in these situations, I don’t want him reading fear from me.  But to see this new reaction from him was really eye opening.  I don’t know what it is like to be afraid if you eat something you will die.  To be told that all your life and then be expected to remain calm when someone in the cafeteria next to you opens a peanut butter sandwich.  Food allergies have been shown to cause issues like anxiety, depression and stress for the children who have them.   The increase in food bullying prompted the Food Allergy Research and Education (FARE) to put out a public service announcement.


 

 

So why am I writing all this?  It isn’t for a “Oh, poor you..”  I know that we are lucky and so many people deal with so much more with their children.  I am truly thankful for the teachers, staff and admin at our school that work with us to keep Gavin safe.  I am grateful for friends, family and classmate’s parents who check labels and and avoid peanut products.  I truly am.  We are blessed and fortunate.  I guess I am writing this so people will be compassionate and teach their children compassion.  Kids don’t know a “harmless” prank can actually cause a lot of damage unless parents teach them. I HATE being “THAT” mom.  The one who has to check the restaurant ahead or ask about the food.  The one who tells her kid we can’t go to an event because it is at an ice cream shop. The one who is dreading back to school time a little bit.

I am not trying to be high maintenance.  I hate feeling like I am inconveniencing anyone.  I am not overreacting.  I am not all drama.  I have to keep my kid safe.  Please don’t roll your eyes at us. Please help us out.

This is what it all about! Thank you.

 

 

20 Comments

  1. Nathalie Graf said . . .

    Excellent post Mariel! Keep doing what you are doing for Gavin! I would do the same!

    Posted August 20, 2013 at 12:12 pm | Permalink
  2. Kimberly Lively said . . .

    Thanks Mariel – your message was heard (loud and clear) and thank you for all of the reference citing and statistics provided! For those of us “living” with the terror (and I mean terror) of having a child who suffers from a life threatening allergy it is unbelievably and unimaginably stressful every time they leave us! We (as parents / guardians) literally count the seconds, frantically search for misplaced cell phones, trip over things to get to the cell phone when it rings, pace, and panic all day until our precious ones are home where they can be watched and monitored again…just to have it start all over the next day. Thanks again for your blog!
    Kim

    Posted August 20, 2013 at 6:04 am | Permalink
  3. robyn said . . .

    We are right there with you. I had no idea that bullying about a deadly allergy even existed since my child is only 3 right now. This scares me to death. You have to fight for the whole school to be nut-free and go toe to toe with parents who think that eating peanut butter sandwiches is a God-given right.

    There are sublingual therapies for it but I’m not mentally able to handle such a scary treatment at this point, after having caused him an anaphylactic reaction in May and a rebound the very next day.

    Our story is here.

    http://therobynnest.wordpress.com/2013/06/01/when-the-worst-happens/

    Posted August 20, 2013 at 8:31 am | Permalink
  4. Leah said . . .

    Great blog! Just thought I’d share that I’ve heard some families having success against bullying in elementary school by having a meeting with the class (parent, child, teacher, + class) at the beginning of the year explaining the allergy and how they (the classmates) can help. The kids then tend to look out for the child instead of bullying. May help for some families. I feel for you. Mine aren’t anaphylactic, so if they eat something they are allergic to the consequences aren’t as great, but one did have eyes like that after touching pollen last year.

    Posted August 20, 2013 at 9:35 am | Permalink
  5. Jen Poiry Prough said . . .

    Great post! Couldn't have said it better myself.

    Posted August 21, 2013 at 3:23 am | Permalink
  6. Phoenix Berry said . . .

    Awesome post! As a waitress turned teacher with severe food allergies myself I know that I personally take these things very very seriously but have seen many teachers and other parents over the years try to brush the severity of the matter off as you described. No one knows the terror you feel when your throat and eyes start to swell shut because someone told you that what you ate was safe until they experience it and most never will! Thank you for posting!

    Posted August 21, 2013 at 5:10 am | Permalink
  7. Mollie Wilson Kendall said . . .

    Phoenix, I didn't know you had these allergies too. I hope that you can share this with other teachers in your new school and help change policies…. As I know my friends fight schools/teachers endlessly.

    Posted August 21, 2013 at 5:41 am | Permalink
  8. Excellent! Thank you for writing this and expressing, in words, EXACTLY how I feel as a parent of a peanut/tree nut allergy kid. I hope your Gavin and my Natalie have a safe, fun and wonderful year. She is a second grader too!

    Posted August 21, 2013 at 12:45 pm | Permalink
  9. Stacey 'fruhman' Finkelstein said . . .

    After being together with my son all his life, he begins kindergarten next week. Back to school anxieties have taken on a whole new meaning.

    Posted August 21, 2013 at 1:24 pm | Permalink
  10. Shelley Miller Braff said . . .

    It's terrifying, no doubt! But, you made all of the preparations, and informed everyone. Maybe it's best to take a break from the allergy blogs and fb pages.

    Posted August 21, 2013 at 1:33 pm | Permalink
  11. Courtney Anderson said . . .

    My week has been the same as I prepare for Kindergarten with my PA son. Thank you for writing this. You have covered it all, at least for me.

    Posted August 21, 2013 at 2:17 pm | Permalink
  12. Brian Keith said . . .

    Thank you for sharing this with us. I've lived with severe peanut allergy and asthma all my life and went through the same torture, bullying, and indifference. To this day I still have people "tease" about the peanuts. They are not aware of the serious nature of this allergy. Anything we can do to raise awareness will help. Your photos and story help make a difference.

    Posted August 21, 2013 at 2:26 pm | Permalink
  13. Thank you for posting Nicole! This is a reminder to us parents who don't have allergies how scary an allergy can be.

    Posted August 21, 2013 at 2:39 pm | Permalink
  14. Thank you for posting Nicole! This is a reminder to us parents who don't have allergies how scary an allergy can be.

    Posted August 21, 2013 at 2:39 pm | Permalink
  15. Danielle Holc Foreman said . . .

    As a teacher, dealing with allergies is very humbling. How scary that 4 out of 6 happen at school. Glad you shared!

    Posted August 21, 2013 at 4:36 pm | Permalink
  16. Sheree said . . .

    I have two words for you HOME SCHOOL! Seriously, with that reaction why take the risk? Your son can still learn and socialize and participate in things but he will be much more relaxed and able to focus. I was a victim of bullying back when I was in school and I am telling you that a child cannot focus when they live in fear of something happening to them at school. If children are threatening to put peanut butter on him then keep him home. Teachers can only do so much and have too many kids to watch at recess to just focus on your child. And its not fair to the safety of other kids also for your child to be the main focus. Every parent who entrusts their child to the public school expects the same amount of care for their child. I’m the parent of 5 kids and we have food allergies too. Anaphylactic allergies as well as allergies with other reactions. We can’t have shellfish, peanuts, tree nuts, latex, gluten, and sugar free sweeteners. My oldest child went to public school. My second oldest had the peanut allergy and I kept him home. One day, while dropping off a spare epipen to the nurses office at school (he has the shellfish allergy) I noticed that in the cabinet there were two jumbo size jars of JIF in the cabinet with the medicine!! I couldn’t believe it!! Also, my mom volunteered at the elementary school where a child was so allergic that if someone ate peanut butter and even breathed on him he would go anaphylactic. One of the teachers kept Reese cups in her desk! Now, the teacher and nurse should have known better BUT its wrong of the parent of one child to expect 500 other families to change their diet and eating habits to accommodate one person. And yes, again, I am a mom of anaphylactic children so I do understand the danger. I just think that expecting the world to accommodate us is unreasonable. I know a family who has a foster child who is a crack baby and now that he is a toddler his body desperately needs protien and carbs. His doctors want him eating nut butters mixed in shakes because he needs something in them. Is his health any less important than my child’s health? No, it is not. Not to his foster mom. Not to those who love him. So, the solution is to homeschool. Its not hard. The resources are available to anyone who looks. And its not unreasonable when your child feels safe and secure at home. This is just my opinion, of course, and you must do what you feel is best for your children.

    Posted August 21, 2013 at 9:37 am | Permalink
  17. Sheree said . . .

    I just re-read my comment. I truly didn’t mean it to sound snarky. That’s one thing about online, sometimes things don’t sound the way they do in my head when I am typing them as they do when read. I know firsthand what you are going thru and how hard it is and how scary. But sometimes the solution is right there. Its a shame we live in a world of food allergies and such danger for our children. You don’t have to publicize my comments if you don’t want to. They aren’t here to make you mad or feel bad in any way. I apologize if they came across that way. I’m not a troll. Just another mom who has been there and dealt with some crappy school people who didn’t help our family, just let things be hard.

    Posted August 21, 2013 at 9:42 am | Permalink
  18. Dixie Jordan said . . .

    Sheree, I disagree, and homeschooling is an option only if it is affordable, as it takes away potential income. It is NOT wrong to expect others to change their eating habits in school. What is wrong is that schools do not provide sufficient ongoing training for staff, new students, and visitors. There is a sign on the front door of an elementary school here that says “Absolutely no Dogs, cats or other animals – severe allergies.” There are no exceptions. Why not “Absolutely no nuts or nut products – severe allergies.” Under the Americans with Disabilities Act, we cannot prohibit foods, or even perfumes, for those of us with intolerances. However, my workplace did post and reinforce a “fragrance-free” environment, and we remind expected visitors of the policy prior to their arriving, even though the worst of exposure to fragrances is a bad headache or sneezing, not generally death. I expect individuals to respond positively to such requests, and most of the time, they do.

    Posted August 29, 2013 at 10:27 pm | Permalink
  19. Robyn Greer said . . .

    Hi Mariel! Oh my gosh, what a terrifying experience you've been though! It is very upsetting to hear about kids bullying and threatening to put peanut butter on a child who is allergic! I personally work in a day care and am sooo strict about the kids' safety.

    I just found your blog post because I had written to you about having our newborn photographed and I wanted to try to find another way to get in touch with you. I met a friend of yours whose grandson was photographed by you and she was telling me how awesome you are. I do understand that it is back to school time, and that has been crazy for everyone, but I hope that you can get back to me soon! My second daughter is due on September 14th, and I would be so excited to know that you were planning on photographing her and her big sister. Please let me know, thanks!

    Robyn Greer – ArtConnectors@gmail.com or (512) 567.6400.

    Posted September 4, 2013 at 2:42 am | Permalink
  20. Amanda Figgs said . . .

    My allergist has a program to build tolerance to peanuts with slow ramping of doses that are extremely dilute. Eventually reaching a non-deadly level. It's worth looking into

    Posted September 12, 2013 at 3:17 pm | Permalink

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