The Teal Pumpkin Project

Halloween is coming up soon.  I know I have posted in the past about Halloween and the challenges that food allergies present, so I won’t dwell on that too much.  We aren’t planning to go trick-or-treating ourselves, but I did want to share some information about a fun initiative we will be taking part in.

A good friend brought to my attention the Teal Pumpkin Project, a food allergy awareness campaign sponsored by FARE (Food Allergy Research and Education).  This campaign encourages people to raise awareness of food allergies at Halloween by providing non-food treats for trick-or-treaters.  Participants are also encouraged to paint a pumpkin teal - the color of food allergy awareness - to place in front of their houses along with a free printable sign from FARE to indicate they have non-food treats available. 

I think this is such a fantastic idea!  Like I said, we won’t be trick-or-treating ourselves, but I definitely want to be able to provide for anyone who might come to our house with a food allergy.  All of the candy we have is Bryan-safe, but I wouldn’t necessarily know if it would be safe for other food allergies.  (Although I did just check- safe for wheat & soy allergies, but it does contain corn…)  Trick-or-treating can be scary and frustrating for kids with food allergies (and for their parents).  If we can help with that and make the experience a little more fun with just a small gesture, I am all in.  Come on by- we’ll be the house with the glowsticks and bouncy balls.  :)

3 years later

So, it has been a while since I have posted here…  My last post was in anticipation of Bryan's food challenge, which didn’t exactly go as hoped.  An oral food challenge is done in small steps.  A very small, precise amount of the food is consumed, and the child is observed for an hour to monitor for any reactions.  Then a second, slightly larger amount of food is consumed, another hour of observation, and then a third, larger measured bite with another hour of observation.  If the three bites are consumed without any adverse affects, you pass the food challenge.

Bryan’s first bite actually went okay.  A few small spots appeared around his mouth, but he said he felt fine.  After the hour of observation had passed, the nurse measured the second bite and brought it in.  That one didn’t go very well.  So not well, in fact, the nurse later commented that she hadn’t ever seen a reaction that bad to such a small amount of egg protein.  The reaction started almost immediately.  Bryan was chewing, but he slowed down and got a look on his face.  He said his stomach kind of hurt and that his throat was itchy.  I looked at him carefully and could see that his face and arms were starting to turn red. Then he vomited. Again and again.

Of course, the whole reason the food challenge is completed in the allergist’s office is so that they can address any reactions quickly, so luckily the doctor and nurse team were able to take care of Bryan immediately.  They administered the Epi-Pen, which Bryan really didn’t want, but we told him it he needed it to stop the reaction.  It helped, but after an hour of close observation, he was still very red and very itchy, so they actually followed up with an intravenous course of steroids.  We ended up spending the full day in the allergist’s office- not exactly what we were hoping for, but obviously thankful for the amazing doctors and nurses who took care of us all day.

While not our favorite experience, there were some positive things to come out of the food challenge.  First, Bryan knows what a reaction feels like now.  He knows how it feels, he knows how it progresses- and he knows he doesn’t want it to happen again, so he is going to be extremely careful to avoid his allergens.  Also, my husband  knows what a reaction looks like now.  He also knows the signs to look for and he knows how serious it can be.  I know he knew anaphylaxis was serious, but not having seen it, he didn’t really have a sense of what to expect. 

Needless to say, I wasn’t super-excited about sharing that experience right away, so I stepped away from this blog for a little bit.  But for the most part since then, things have pretty much been “the usual”, at least as far as allergies go.  There was an incident in 2^nd grade where kids were going around talking about the “cheese touch”, but I found out that had more to do with a movie (Diary of a Wimpy Kid) than directly making fun of Bryan.  We moved just before the 3^rd grade, so we had to start from scratch again, but Bryan’s teachers and the school nurses have all been really great.  There was also a boy who, during the first few weeks of 3^rd grade, kept trying to give Bryan Cheetos.  First Bryan just told him no thank you, then told him he couldn’t because of his food allergies, and then one day Bryan came home and said the boy had put some Cheetos in his snack bag.  I was upset at first, but after talking it over with Bryan, realized the boy probably honestly didn’t mean any harm- he just really wanted to share with Bryan and didn’t quite get it.  As it turned out, the boy accompanied Bryan to the nurse’s office after the snack bag incident and she made sure he understood why Bryan couldn’t have his Cheetos (Bryan was fine- the teacher just sent him to the nurse as a precaution).  

So here we are, still allergic, but with a pretty good sense of how to handle things.  And for now, we are absolutely okay with that.  

A glimmer of hope

Bryan had an appointment with his allergist at the beginning of August, and for the first time, we came away with some potentially good news. At first, things looked the same- his blood tests all came back with extremely high IgE levels for all of his allergens. (And for those who don't live in this world of allergy terminology, that basically means the likelihood of an allergic reaction is extremely high.) However, our allergist told us that even with the high IgE numbers, she wanted to try a skin test for egg, and if that came back clear, she would want to follow up with an oral food challenge with egg. Wait a second... what did she just say?

Several studies recently have shown that a high percentage of children over the age of 6 who test positive for an egg allergy may still be able to tolerate certain foods that contain egg in them- namely baked goods. Heat has a tendency to denature proteins- basically, change their structure. And when you bake an egg at a temperature of 350 degrees or higher for 30 minutes or more, the protein structure of the egg changes enough that, for some egg-allergic children, their immune system no longer recognizes the protein. Which means that their body no longer attacks that protein- thus, no allergic reaction. So the child is still allergic to egg itself- no omlettes or scrambled eggs. BUT if the egg is in a baked good that has been baked at the proper specifications- again, 350 degrees or higher for 30 minutes or more- the child can eat it safely.

So we did the skin test for egg. (Again for the allergy-uninitiated: the skin test, like the IgE blood test, can tell you the likelihood of an allergic reaction, and it is often used to confirm the results of the blood tests. Neither test, however, can determine the potential severity of a reaction.) I watched my son's skin very carefully for the ten minutes it took for the test to develop, expecting the huge welt to appear as it did the last time we did skin testing... and nothing happened. It came back clear. Wow.

Armed with a negative skin test for egg, our next step is an oral food challenge, scheduled for September 30. Basically, we are going to sit in our allergist's office for at least 2 hours that morning, watching Bryan eat a brownie. A brownie that I will have to make with one egg (and no milk, peanuts, tree nuts, or sesame), baked at 350 degrees or higher for at least 30 minutes.

I'm still kind of trying to process everything. I know that there is a very real possibility that we go into the food challenge, and Bryan could still have an anaphylactic reaction. And to be perfectly honest, not a whole lot will change since, beyond monitoring for his other allergies, the egg specifications are pretty strict. But really, this is the first time in 6 years that we have had anything resembling good news with his allergies. And that glimmer of hope is definitely something I am holding on to.

(School) Year-End Recap

So, we have been out of school for a month now, and I realized that I was really bad about blogging this past year. But in a way, that was kind of a good thing because really- there wasn't a whole lot to blog about. For the most part, Bryan's year in kindergarten went really well. Bryan's kindergarten teacher was fantastic- she was really attentive and checked with me on pretty much everything. Bryan's class had a "Fun Friday Snack" every week, and she usually e-mailed me each month with a list of the snack items that were coming up. We would work together to figure out ingredients that would allow Bryan to have the same thing as everyone else, and when it simply wouldn't work, I sent a separate, similar snack for Bryan. For the special days that had activities that involved food, like the holiday party and Valentine's Day party, we met in person to go over the party menus. Whenever there was an activity that involved food of any kind- gluing macaroni noodles, or playing with rice- she contacted me ahead of time, just to make sure that it was something Bryan could touch. And I was so grateful for that- it made me feel much more at ease that she was taking his allergies so seriously.

I will admit, the system wasn't without its flaws. When we met before school started, Bryan's teacher and the Assistant Principal agreed that Bryan could sit at the end of the table each day so that the teachers on duty would know where he was, and that they would try to make sure no one with peanut butter sat near him (knowing that the other allergens would be much more difficult to monitor for). It wasn't until January, however, that I found out that policy wasn't being implemented. At that point it seemed picky to make a big deal out of it, since he had been fine for the 4 months up until then. But I was kind of disappointed. I also got calls from the nurse's office pretty regularly because Bryan had red itchy eyes or was sneezing uncontrollably. Those kinds of reactions are hard to pinpoint as food allergy reactions vs. seasonal allergy reactions, but the remedy was the same in either case- administer Bendadryl and keep an eye on him.

And there was also the playdate. Bryan had a friend over to play one day, and so his friend's mother invited Bryan over the next week. I had talked to her casually about Bryan's food allergies before, and she was a preschool teacher who had allergies in her school, so I figured everything would be okay, and I decided to try not to be "scary mom" this time around. I talked to Bryan ahead of time- he had his snack at home, and we talked about how he shouldn't eat anything, that he should say "No thank you" if they offered a snack, but that he could ask for water if he was thirsty. And when I dropped him off, I showed Mom how to use the Epi-Pen and told her that Bryan had already had snack, that he wouldn't need to eat anything while he was there, and left it at that. And when I came to pick him up an hour and a half later, they were sitting at the table eating Ritz crackers.

As I have mentioned previously, plain old Ritz crackers are technically safe for Bryan. And when I talked to Bryan at home about what had happened, he said he asked Mom to read the label to make sure they were safe. And while I was glad for that, it wasn't what we had discussed- neither for me and Bryan nor for me and Mom. And so I realized that I was maybe giving Bryan a little too much responsibility for now, and that I do in fact have to be "scary mom" when it comes to these things. Lesson learned.

All things considered, though, these were minor incidents to have to deal with. No major allergic reactions, no major backlash from other kids or parents. We all survived relatively unscathed- and to me, that was a major accomplishment.

Five years ago...

Five years ago, I sat down to give my 7-month old son some formula for the first time. I remember wondering whether or not he was going to like it, since I had heard that it sometimes takes a few tries for babies to adjust to the taste. And I remember the feeling of sheer terror that gripped me as I watched the onset of what I would soon discover was an anaphylactic reaction to the milk protein in the formula.

At the time, I was vaguely familiar with food allergies. As a teacher, I had a child in one of my classes with a peanut allergy. I had been instructed on how to use the Epi-Pen, but I had never actually seen a severe reaction before. I was stunned and felt completely unprepared, not only for how severe the reaction was, but also for how quickly it proceeded.

Even though the experience was terrifying, I am thankful for so many things. That God gave me the strength and clarity to get Bryan to the hospital, even through both of our tears. That we learned about Bryan's allergies at a young age, so that it has been something that he has grown up with. That Bryan has the personality and the maturity to manage his food allergies as well as he does. And that we have been blessed with a network of supportive and caring people who are willing to listen and be patient with us as we figure out how to live outside our bubble.

Life with food allergies may never be simple, to be sure. But it's our life, and we are learning to live it, day by day, month by month, year by year.

First day of school!

Yesterday was Bryan's first day of kindergarten at his new school! He said he was a little nervous, but he was fine once he got to his classroom. He got to play on the playground twice, and he got to all the way to three monkey bars. He was a little disappointed that he didn't get to play on the computers yet, but he was excited about going back today because he was going to paint in art class.

And how did my first day of Bryan's kindergarten go? Mine was a little more emotional. I didn't cry in the classroom, but I did start to tear up as I waited by the clinic to drop off Bryan's EpiPen and Food Allergy Action Plan. As much as Bryan's allergies dominate my thinking, I still don't like thinking about what could happen.

Not that I REALLY think that anything is going to happen. We got a chance to meet with Bryan's teacher before school started, and I really do think that Mrs. S is going to take care of him. Our conversation went well, and she really seemed concerned about making sure that Bryan stays safe in her classroom. She even sent home a label from the soap that they use in their classroom to make sure that Bryan could use it, which made me feel good that she is going to be proactive about his allergies.

That said, my heart does jump a little every time the phone rings, just in case it is someone from the school. I kind of wonder how long that anxiety is going to last, or if it is even ever going to go away. Because even though I do think Bryan will be okay- I still don't like thinking about what could happen.

Countdown to Kindergarten

Three weeks. Twenty-one days. It sounds like a long time, but then suddenly, it doesn't.

We have three weeks before Bryan starts kindergarten. This is supposed to be an exciting time- getting ready to start at a new school with a new teacher, new classroom, new friends, new everything. Which unfortunately for me, is kind of the scary part. I will admit that I am by nature an introvert, and I think that Bryan has inherited that characteristic from me. So any sort of new situation tends to be a bit overwhelming anyway from that perspective. My main concern, however, is how to handle and negotiate Bryan's food allergies in this new situation.

We met with the Assistant Principal of the school back in April, mainly to give the school advance notice of the issue and to try to gauge how our concerns would be addressed, and overall, we felt pretty good about the meeting. The school has had students with food allergies before, but none with quite the severity of Bryan's. However, we discussed Bryan's allergies and related issues at length, and the Assistant Principal seemed willing to work with us to feel comfortable about enrolling Bryan at the school. He actually followed up with me recently, and was hoping to be able to arrange a meeting for us with Bryan's teacher before school starts. That definitely made me feel better- that he not only was keeping us in mind, but actively trying to work with us to make the transition a successful one.

Do I feel better? Yes. Do I feel prepared? Not even a little bit. To be honest, I don't know that I will ever feel completely prepared when it comes to putting Bryan in a new situation. But I guess I have three weeks to try to get there.