Our Peanut Free School Journey

In December of 2010, we began the process of asking our elementary school to go peanut free for our anaphylactic-allergic daughter in anticipation of her starting there the following year.

 This is the open letter I wrote to our community in anticipation of the controversy that might ensue:
Green and Bitchy: open letter about our school going peanut free

The process took 9 months in total, but the school was officially peanut free - or "peanut-restricted", as they prefer to be called - by her first day of Kindergarten in September, 2011.

I've waited until we made it through the entire school year safely before blogging our story. There are so many different schools of thought on how safe you can really make a school for children like my daughter. I know perfectly well there's really no such thing as any guaranteed "peanut free" environment where other people can come and go. But I also know that I can't seal her up in a plastic bubble and she deserves the ability to start finding her way in the world in an environment that at least gives her a fighting chance. 
I don't plan to ask that her middle school, her high school, her college or her job someday all go peanut free for her. But right now, when she's little and forgets to keep her fingers out of her mouth, or her nose, or her eyes, right now - it's vital that she have a place where peanut butter isn't, in case she forgets these simple frontline precautions to keeping herself safe. 

Even more reason my family in particular is overjoyed and relieved to have a peanut free school is the fact that we now have THREE children with peanut AND tree nut allergies -and all three are in elementary school together for the next 3 years. 

I'm writing this blog about our experience because I'm  asked for advice on the process via both the internet and in real life almost daily. Just today at our allergist's office, the Dr. came in and asked if he could give my contact info to another mother about to embark on the same process with her school in a neighboring county. It seems more and more that there is a demand and need for peanut-free schools for our children and I am only too happy to help in any way I can - increasingly so with every death notice I see about another child killed by peanut or tree nut allergies. 

Our journey started with our daughter having her 4th anaphylactic reaction at 5 years old and her allergist saying that she would only be able to attend a peanut free school. I had no idea how to make that happen, so I asked some friends who were teachers and was told I would need to make a 504 plan with the school. This is the federal law that says a school has to accommodate childrens' disabilities.  I found the 504 coordinator for our district and began emailing her about Jovie's condition and asking for a meeting. I'm really glad I started the process very early, because I had no idea it would take so long. 

Our school was initially already a peanut and tree nut free classroom facility. The principal we were dealing with at the time felt that this was good enough and balked at being asked to remove and ban peanuts entirely from the building and grounds. It turns out, however, that children were actually permitted to eat peanut products in the classrooms on field trip days or when the cafeteria was already in use for assemblies or events and they ate in the classrooms. Severely peanut allergic children could go eat in the principal's office at these times. I knew this plan would never work for my daughter due to the potential for peanut residue...and besides, if they bent the 'peanut/tree nut free classroom' rule regularly for these reasons, there's really no consistency or accountability. You can't say the classrooms are peanut and tree nut free if people can eat peanuts and tree nuts in them!

The school district was not satisfied with my daughter's allergist's letter describing her history and the severity of her reactions. I also provided one from her pediatrician, saying the same thing. The 504 coordinator took several weeks to call them both and have lengthy conversations about any other way they could segregate or accommodate my daughter. When the Dr.s held firm that she needs a peanut-free environment, they asked me to come in for a meeting where I once again had to explain her history and symptoms and was subjected to the principal's ignorance and irresponsible view on the subject. She told me, "If my children couldn't have had peanut butter, I think they would have starved to death - I think the way we have the school allergy plan right now is just fine." She asked me disbelievingly, "If she can't go to a school unless it's peanut free, how do you take her anywhere? Do you ask the supermarket to go peanut free for her, too?"

It was a wait of many more weeks while the school and the district reviewed all of our information. At one point early in the summer, they did tell me they would go peanut free, but then they retracted the commitment and said the decision needed further review. 

Finally they got back to me and asked if I would be willing to provide a 3rd medical opinion by a Dr. of their choosing? I agreed, with the stipulation that they pay for the consultation. They made us an appointment with the head of Allergy and Immunology at Children's Hospital of Detroit. Who not only upheld our original Dr.s recommendation, but added that the classmates of my daughter have to wash their hands upon arriving at school every morning. 

The District once again took many weeks to review this new recommendation and in the meantime, I began doing my own research into the issue and found some excellent sites for support and information on the subject:

As I waited to hear the school's decision, I contacted the Michigan Protection and Advocacy Service, Inc. and learned that we would be provided free legal representation should the school reject the three medical recommendations for our child's disability. I also learned that according to Michigan discrimination laws, offering to segregate a child with food allergies as a form of accommodation against the parents' preferences is actually a prosecutable form of discrimination against a person with a disability, but if the parents request this form of accommodation themselves, it is perfectly legal.
(We do have such a table at our school - it currently serves as a safe zone for tree nut allergic kids, in case other students bring in almond butter or other tree nuts, which are still allowed in our lunch room and grounds - just not the classrooms).

By the week before school was due to start, the district contacted us to let us know that they would be going peanut restricted for the entire building, field trips and outings and school grounds. We came in and drafted a 504 plan which all parties involved agreed to. Jovie's teacher, principal, a school nurse from the high school and the 504 coordinator were present, with the Superintendent having previously signed off on it. 

 A letter was sent out to parents days before school began, informing them of the new rule. The school issued a statement when the story was aired in the local media saying that they felt going peanut free was the safest policy for everyone at our school and that we have several students with peanut allergies. The principal hosted a question and answer session for over a week on our school's PTA page on FaceBook to answer questions and concerns that parents had about the new rule. Our PTA set up an allergy awareness table at our first PTA meeting of the new year, and offered samples of peanut butter alternatives like sun butter for parents to try. Our food allergy committee volunteers donated their time to put up the new peanut free signs around the building.
A letter went home with the "fun" suggestion that parents offer their children their favorite peanut-containing snacks in the morning (making me profoundly grateful for the added requirement of hand-washing before class by my daughter's classmates) before school and send them to school with their cereal to eat at lunchtime instead.

We also got a new principal during this time and I have to say he was a breath of fresh air.

His empathy and acceptance of what needed to be done to keep not only my daughter but almost a dozen other peanut and tree nut allergy students safe was reaffirming after the attitude of our previous principal. I watched the first week of school as he patrolled the halls and lunchroom, reminding and asking students about their snacks and lunches. He would bring them into the office if they had peanut products, ask them to throw them in a specially designated trash receptacle with a lid and then call their parents to bring replacement items or provide one from the school and send a note home. 

Per our 504 plan, the staff were trained in the use of Epi-Pens. 
 A plan was devised whereby substitute teachers report to the secretary for Epi-Pen training before they teach class.

We wrote an emergency anaphylaxis plan describing Jovie's typical pattern of impending anaphylaxis and how it should be treated and a copy was distributed to every teacher in the building and kept on file in the office. I made kits containing her Benadryl and Epi-Pens for the office, her classroom and her backpack. 

As stipulated per Dr.s orders in her 504 plan, she has also self-carried her epi-pen for her entire year of kindergarten.

Since just before she was four, she's never left home without wearing one of her special purses or fanny packs for her epipen and benadryl.

During the class celebrations and parties, the principal was everywhere, patrolling and checking the treats.

For Halloween, we came up with the idea of putting a big plastic bin with a lid just off campus, at the fire station behind our school. There we asked parents to deposit any peanut-containing candy they wished to donate. 

There were a couple of missteps in our carefully laid plans, but I don't think it was realistic to expect none during our first year of transition. A teacher made the oversight of bringing in an assortment of cookies for Teacher Appreciation week in May and it contained several peanut butter cookies. The oversight was caught quickly and the cookies disposed of, never having left the staff lounge. At the end of the year picnic in a local park, a parent brought baklava encrusted with tree nuts.

It was not removed or disposed of, reinforcing for me that my children simply won't be attending any extracurricular activities with food-centered celebrations, a backup plan I had already known I would feel it necessary to implement. 

Now school starts again for 2012 next week. Letters have already come home with reminders about the peanut free school and grounds as well as the peanut AND tree nut free classrooms and outings and field trips. The kindergarten meet and greet was this past week and I have another kindergartner starting this year, also with peanut and tree nut allergy - though he has not had an anaphylactic reaction (never having been exposed to peanuts or tree nuts). I brought all of my children to the meet and greet and saw no less than 2 peanut products in the group - a chocolate covered bar of peanuts and a peanut butter and jelly sandwich. 

I'm not sure how these oversights occurred when letters went out to all families at our school, but the principal rectified both situations immediately. Letters will again be going out the first week of school and we will put up a reminder on the school's marquee, out in front near the main street. 

I think we also need signs by all of the gates onto our playground -a goal I hope to explore this year. 

It's not a perfect solution, I know they aren't 100% safe from ever being exposed to a peanut there, but I think it's a great compromise. The school is doing its job the best it can, and if I'm doing mine and reminding my kids constantly that they never eat anything that didn't come from home, that they wash hands frequently, that they report any symptoms to an adult promptly - then we might just come out of this with everyone a little safer, more tolerant and understanding about food allergies in today's world.

 And more importantly, we didn't lock them up and "keep them home" to homeschool them. Which is the version of homeschooling most people who recommend it to us peanut allergy parents seem to envision - when in actuality, my homeschooling friends and clients still have to deal with this issue in their many outings to public venues with homeschool groups, co-ops and sports activities! No parent of a child with life-threatening food allergy wants to emotionally cripple their child by denying them the chance to learn how to navigate out in the real world with their condition. Physically disabled children get wheelchairs and ramps, our kids need peanut bans until they are independent and secure enough to manage environments without them. 

 All we ever wanted was a chance for them to get the same thing other kids get: to go and learn and socialize and achieve without having to die or be seriously harmed while they do. 

Aside from my gratitude and relief that our district has provided us with that chance, I am thrilled and proud that our school is peanut free.

 There couldn't be a better location for a food allergy child to attend school, if you ask me. Right next door, on the corner of the street our school is on, is one of the top allergists in the state. In fact, he is the Director of  Pediatric Allergy and Immunology at Beaumont Hospital as well as the Director of Pediatric Pulmonology.

 Sitting right smack behind our rear parking lot is one of Royal Oak's fire stations.

 It is a straight line from their back door to the kindergarten room door that would take less than 2 minutes to trot on foot.

 About half a mile down 13 mile road (that our school is on) is Beaumont Hospital. Literally about 4 minutes for an ambulance to cover. 

Across the street from the hospital is another one of the top allergy centers in the area.

 I simply couldn't think of a more perfect location for an allergy aware and peanut restricted school, frankly - and I'm very proud of ours for getting current and putting student safety first. 

(Updated 9/6/12 - The peanut free reminder was up before the 1st week of school was out and the principal informs me that we are on track to get signs on our gates soon.  :-)

Updated 10/4/12: We have now placed a peanut-specific trash can in the lunch room for when peanut products are occasionally overlooked and brought from home. We also came up with a note to send home in the child's lunchbox once the item is disposed of in the trash can, alerting parents to our peanut-restricted status and the breach of policy. This is a good step toward keeping peanut items out of  our school's main office, where they were previously brought.

10 days after NJH ~ update

As soon as we flew home from Denver, I had to hit the ground running. Dr.s appointments the following day, 2 kids with a joint birthday party we'd delayed until my return and 'Lou's new routine to get the entire household adjusted to.

The twice daily baths are a huge hit, as we were almost exclusively a shower-only family before. 'Lou has no less than 2 or 3 siblings volunteering for each bath - we are finally getting some use out of the giant garden tub we put in when we built our addition but never use!

I've managed to make it part of our daily routine that we start our day with his morning soak before anything else. He still sleeps in dry wraps over his hands and feet,

 and I'm only applying the lightest layer of Protopic in the areas that were the hardest to clear up - even though they are beautifully clear now. 

 The rest of his skin is being maintained entirely by the plain warm water soaks and then sealing it in with a moisturizer - as well as an extra lotioning with vanicream in the middle of the day, no matter what, no matter where. He has never ever looked so perfect. We want to change his name to Pinocchio, because he is finally a real boy instead of a sandpaper mache version.

No itching, no burning, no scaling, no flaking, no cracking, no raw spots, no infections. It feels like winning the lottery to think that I can possibly keep him from EVER being in that living hell again. 
Not to say that he doesn't still have some unusual issues.

 I took him to his pediatrician this past week and for some reason, he started breaking out in hives as soon as I got his clothes off in her office. 

His own version of flattened hives were popping up on his arms and belly and I have no idea what was causing it. He got itchy and irritable, but I knew that as soon as we got him out of there, it would clear up - and it did. 

It did elicit a discouraged phone call from me to our PA, Elizabeth, at NJH - who reassured me that this is normal for kids with his skin diagnosis. I have to reprogram myself not to worry about every single reaction and hive and outbreak. I used to feel like it was my mission to trace and track down every possible culprit and try to eliminate it from his world. 

Now that I know the reactions are just a matter of his skin lacking a barrier, I understand them. They are just getting into his skin and system and causing aggravation locally - but it doesn't mean he is going to have a dangerous or anaphylactic reaction. Instead of focusing on everything outside of his skin that I can try to control, I only need to focus on keeping his skin as protected and healthy as possible and eventually all those outside things will stop causing so many of these reactions. 

We are also all still half-expecting to get a delayed result of a genetic disorder that took a little longer to discover - as his local Dr.s and I keep saying, "But wait, if his filaggrin loss is acquired, how was he born with hives and swollen eyes and reacting to dairy through breastmilk?" I am keeping the September genetic results timeline from NJH in the back of my mind. 

His foreskin issue has improved 70% since returning home -and I am hoping once the treatment cream is discontinued, it will stay this way. We are following up with a local pediatric urologist for another opinion and prognosis this month, as well. 

Only a day after Elizabeth at NJH talked me down from the hivey pediatric visit, he came down with green snot and a terrible earache. It suddenly clicked for me that the hive outbreak and extra sensitivity was probably because he had a slight cold bug! What a change - only hives and itching from a virus that were gone 10 minutes after getting into our vehicle! 

Always before, a virus or bug in the house resulted in a huge eczema outbreak and prolonged setback in reaching baseline for his skin. I am not allowing his skin to break out like that anymore, because I am keeping his skin ultra hydrated and sealed with emollients and moisturizers and it is making all the difference in the world. With the added advantage of the nasal rinsing I have learned (along with my normal protocol of chiropractics for ear complaints and extra elderberry), his ear hurt and he felt warm/feverish for 16 hours and then we had it literally flushed right out of his system. And his skin never flared with his illness - beyond those few hives. A mumma could get used to this!!

We did try giving him his first ever Sunbutter and it provoked extremely dark purple, itchy rings around his eyes with tiny, hive-ish bumps.

 Still not sure how to handle these types of food reactions on my own, I've shelved the sunflower products for him until we can check with one of his local allergists, Dr. Doshi, to see what he advises.

He is very familiar with the philosophy at NJH and is on board with 'Lou's care plan. We plan to do a food challenge for wheat one more time in his office on 8/27 -and then possibly more for sesame and salmon. 

We can't wait for our next appointment with his other local allergist, Dr. Bahrainwala.
Dr. B has been seeing 'Lou since infancy and he is going to be just as excited as we are at 'Lou's perfect and much more functional skin for the first time in years.

I remember my trepidation about fitting his home care requirements into our busy household while still at NJH. I recall expressing my fears to the clinical social worker/therapist -Jennifer- while there.

I said to her, "I am just trying to picture getting 3 soak & seals a day in and lotioning him every time he itches with a house full of 4 other kids, 2 giant dogs and everyone is breaking their bones constantly!"

She looked at me skeptically and said, "But what are the odds that someone is going to break a bone while he is in the tub?"
 And I thought, "This lady obviously does not have 5 kids." 

So this particular part of the update is just for you, Jennifer - in hopes that you are still checking in here now and then: Last Sunday as 'Lou was getting his 8:30 pm bath, our older boys were walking their dogs when I got a call that one of the dogs had dashed in the street and been hit by a car. I pulled him from the tub, wrapped him in his terrycloth robe, buckled him into his carseat, pulled the robe open, handed him the tube of vanicream in my purse and told him to put it all over himself while I drove to the scene of the accident.

 His carseat will never be the same, but I stuck to the plan as closely as possible!! Incidentally, the dog needs a hip replacement now - which is exactly how our luck was going before I flew to Denver, so now I feel like I'm truly back home. My only regret is that you did not offer a margarita therapy program that I could have utilized before jumping back into my life here. Maybe you can work on implementing this before we might make any return trips. 

I hope to write updates regularly, to report on 'Lou's progress. We are on pins and needles to see if he can really handle going to school. The principal at our school should be contacting me shortly to see if we need to do anything special to accommodate 'Lou's School Care Plan from NJH. 'Lou just picked out his first ever backpack

 and got the confirmation letter that he will be getting the same teacher his brother and sister had. He is so excited he can hardly sit still. 

Now I'm off to watch a family movie with all my kids, including my little guy who can laugh and smile and sit still and focus on something for the first time in longer than I can remember. 

~Just finished watching the movie with the kids and had to add another exciting detail to the update: 'Lou fell asleep in his "magic jammies" and pulled a heavy blanket on top of himself. I just went to carry him to bed and noticed that his face was shimmery and sparkling. Now, you might assume he was an "Eclipse" - version vampire what with the pallid skin, propensity to stay up all night and sleep all day, elegantly thin frame and dark rings around his eyes, but no - it was sweat! He is sweating for the first time ever!! We have never seen this child sweat, not even on the muggiest, steamiest, swelteringist of humid Michigan days. And if he had, it no doubt would have burned like acid on his cracked and ravaged skin. Now he's sweating away while he sleeps like a normal, healthy, hydrated kid whose skin is retaining moisture. Like I said, Pinocchio.