Average Allergy Mom

A big move filled with lots of great allergy "firsts"

2012-10-27T10:43:00.001-04:00

So we've moved to a new town and a new school. Our last move was very stressful given the planning and forethought required to keep Alexa well fed and healthy. I had no idea if I could find her safe brands or how her new school would handle her allergies. This move, thankfully, has been unusually easy from a food allergy perspective. There have been many 1st for us and I'm just overwhelmed by how great this feels! These are the "firsts" we've had in the last 2 weeks:

1.) When traveling, we stay in efficiencies so can cook or reheat meals for Alexa. This time, we opted to stay in a regular hotel, which is cheaper. We planned to order safe pizza for dinner and I brought a bagel for her breakfast the next morning. When we arrived at the hotel Alexa asked if we could eat out. (surprising since we rarely eat out with her). Next to the hotel was a restaurant named Papa Razzi. I looked up the restaurant to see what I could find about food allergies and at the bottom of the menu it stated "If anyone in your party has a food allergy, please notify your server." I decided to give it a try knowing that if they could not feed her safely (or if I was uncomfortable) I would give her the extra lunch I had packed for the trip. The staff was amazing (I'll give you all those details another time), Alexa not only had a delicious safe meal, she also had breadsticks and focaccia bread for the first time! woo hoo! Jason was actually disappointed he missed this big milestone. I'm sure it seems strange to a non-allergic family but for our family, it's a big deal.

2.) The morning of our move I stopped by her new school to drop off her records, meds, etc. I had already researched the school and knew they had an amazing allergy policy but I was overwhelmed with how thorough they were. As I was completing forms I saw a box for volunteer badges and attached was a sign that read "if you are visiting any of the following classrooms, please wash your hands prior to entering to keep our food allergic children safe" wow. Alexa's class was listed. awesome. Next, the nurse came in and met Alexa and I. She took her meds, read through everything and showed me the posters they keep around school which have photos of each allergic child and list their allergies. I was thrilled to see it but also shocked at the large number of kids on it *shakes head*. The nurse also gave me several options for Alexa's Epi Pens, wear them, teacher hand off, a set for each teacher, etc. We opted for teacher hand off and I will tell you Alexa is THRILLED her Epis are with her at all times. She said "Mom, this school is just GREAT! I mean GREAT! They bring my Epi Pens everywhere, even recess and if someone forgets them they send someone back to get them." I had no idea how much it bothered her to not know where they were stored. Physically seeing them with her all day gives her a sense of comfort. What a departure from last year. I had to email the principal the Chancellor Regulations detailing why my daughter HAD to have her Epi's within arms reach and went 4 days before finally getting them approved. When I dropped Alexa off on her first day at her new school this year, I just kissed her in the hallway and watched her go knowing she was in great hands. When I picked her up she announced there were several other kids with allergies in her class and even another 2nd grader named Alexa with a PN/TN allergy. I could tell right away she feels safe and no longer feels "different" from the other kids. What a gift!

3.) After 4 days at her new school, Alexa rode the bus for the first time. I called the bus company the Friday before and the woman was SO nice and helpful. She said "Yep, we have her listed, we know she's carrying them, we know they will be in her backpack. We will have her sit up front and all bus drivers are trained." wow. It feels so good to let my girl be just a regular kid!

4.) Last night we attended our first school party. Normally, at school events, as soon as we arrive I scope out the food and show her what's safe, what's not, and what to be aware of. Last night was the FIRST party we have been to that was completely, repeat, completely nut free!!! wow. In the craft room they had 1 food related craft and they used all safe items. (oreos, whipped cream, twizzlers, skittles). In the "Cafe" they had pizza, fruit, veggie straws, safe pretzels and water. Alexa and I came into the room, I scanned the table and I looked at Jason and said "did you see the food? No nuts, no baked goods, no candy!" I literally tear up thinking about it. For the first time EVER, I could relax at a school event and Alexa could enjoy the event without worry and without the "I wish I could eat that! I hate allergies" There was no nut residue to worry over, no little hands covered in Peanut butter touching everything-just happy kids and happy parents!

5.) After 2 years of Alexa being unhappy, anxious and/or overwhelmed about school (socially, academically, or safety wise) She is happy. She loves school! That is a "first" that makes me cry.

I know fellow allergy parents can relate to the joy and relief I feel knowing our child is finally in a school where she feels like just one of the gang. Safe, secure and able to focus on learning instead of worrying about her getting sick. My gratitude towards the PTG and the school administration for making this school safe for my daughter, is just overwhelming. I'm going to write them an email thanking them. I'm sure they know how grateful the other allergy parents are but I feel the need to remind them how amazing it is to be in an environment where the school puts the kids first and the adults could care less if there are cupcakes, candy, or CRAP served at these events.

So happy and blessed that this has been such a wonderful experience.

What are you REALLY giving up?

2012-07-08T16:15:00.002-04:00

Why are some people so possessive of their food? What are they really being asked to sacrifce.....
Here's a poem I wrote about the issue:

The Sacrifice:

Could you go without peanuts for a few hours a day?
Could you go without soy, fish, wheat or whey?
What would you lose for an hour or two? Would this really be so difficult for you?
Would it cause you grief? Would it cause you pain?
Would it rob you of joy? Could you smile again?
Would your hopes and dream all disappear...cause such pain you'd cower in fear?
What really are you giving up by avoiding some food? Is this too much to ask of you?
A favorite food compared to a life?
It astounds me it cause such strife.

No Bake Sunbutter Energy squares.

2012-04-21T17:41:00.002-04:00

Elizabeth Goldenberg at OneSpot Allergy http://blog.onespotallergy.com/ posted this No Bake Energy Bites recipe on her blog. http://blog.onespotallergy.com/2012/02/sunbutter-peanut-free-gluten-free-and-delicous/

No Bake Energy Bites (Nut-free version of Smashed Peas and Carrots recipe)
1 cup oatmeal
1/2 cup SunButter
1/3 cup honey
1 cup coconut flakes
1/2 cup ground flaxseed or hemp seeds
1/2 cup mini chocolate chips
1 tsp vanilla
Mix all ingredients in a medium bowl until thoroughly incorporated. Working with wet hands, press into balls. These are so delicious, consider doubling the recipe. Enjoy!

When I made them, Alexa complained they made her mouth itchy. I could not figure WHAT was causing this. I later realized the Bob's Red Mill Flaxseed I used had a "same facility as tree nuts" warning on it (dummy!!). I really wanted to make the kids some kind of granola bars. Since I had not yet tracked down any safe Flaxseed, I made another granola type bar from a recipe I found on Pinterest. (at least I think that's were I found it). It contained oats, Sunbutter, honey, oil, vanilla, and 1 cup total of whatever mix-ins you wanted. I chose coconut flakes, raisins, craisins, and chocolate chips. You have to melt the honey, Sunbutter and oil before adding your oats and mix-ins so when I added the chocolate chips, they melted and the bars came out like chocolate granola bars. The kids LOVED them! Yippee! I finally had a way to get some fiber and fruit into the boy who eats nothing healthy! So, anyhoo, I still wanted to try the no bake recipe from Elizabeth. Today (even though I'm STILL out of flaxseed) I tried this combo:

1 Cup Oats (Quaker old fashion)

1/2 Cup Sunbutter spread (I used creamy)

1/3 Cup Honey (from the farmers market-YUM!)

1 Cup Coconut Flakes

1/2 Cup golden raisins

1/2 Cup No Nuts Dark Chocolate bits -not pictured (or use Enjoy Life Chocolate chips)

1 tsp vanilla

I mixed all the ingredients together using gloved hands to incorporate the Sunbutter and honey. The raisins didn't want to stay in the mix so I microwaved the mix for 15 seconds. I mixed again until it was all together and then spread it evenly into the bottom of a large plastic storage container lined with wax (or parchment) paper. (see photo) I chilled it for 1 hour and cut them into squares. YUM! They are a bit chewy from all the coconut but are delish for a quick bite.

The kids haven't tried them yet-I'll let you know the final verdict. I have GERB brand sunflower, pumpkin and flaxseeds from PeanutFreePlanet on the way- when they arrive I will experiment with all kinds of homemade granola bars and granola for the kids. Who says living Peanut/Nut free is boring?? Not me!!! Hope you try these out and enjoy them!!

Reference: http://blog.onespotallergy.com/2012/02/sunbutter-peanut-free-gluten-free-and-delicous/

Easy Egg, soy, nut free Donuts

2011-11-13T14:06:00.000-05:00

While searching for the Mini donut recipe I posted earlier, I came across an easy donut recipe and decided to give it a try this morning. They are best eaten warm so I recommend making them in small batches. My kids really enjoyed them. Also, be sure you cook the donut "holes" until they are deep brown, otherwise the middle is raw. Hope you like this easy, quick alternative.

Ingredients:
1 can Pillsbury buttermilk flakey biscuits
1/4 cup sugar
1 tsp cinnamon (or to your liking)
oil for frying (I use safflower oil)

Directions:
Take out the biscuits and lay a few out on a cutting board or pastry mat. I used 4 biscuits. Using a biscuit cutter or small glass, cut a hole from the middle of the biscuits. Save the middle for donut holes. Alternatively, you could have the children use their thumbs to push through to make a hole.

In a deep sided pan, heat enough oil to cover half way up the donut. I used about 2 inches. Heat oil until just shimmering. Drop in donuts, brown on one side, flip. Remove to a plate lined with paper towels for a moment (to removed excess grease) then dip the donuts in the sugar cinnamon mixture. You could also do this in a paper bag, shake donuts to coat but a shallow bowl works too. You could also use powdered sugar.

Enjoy!!

Egg, soy, nut free mini donuts

2011-11-06T13:55:00.000-05:00

When Alexa was a little over 1 year old I bought her a donut at Dunkin Donuts. She spit it out. I didn't know at the time she was allergic to Peanuts, tree nuts, egg, soy and all legumes. It probably made her mouth itch. But I just thought "what kid doesn't like donuts?". Since then, I have been meaning to try to make some egg free donuts but just never got around to it. I came across a mini donut pan the other day and decided it was time to give them a try. I found this recipe at Vegan Yum Yum http://veganyumyum.com/2007/02/mini-donut-test-kitchen/ and decided to give it a try today. The photos are the end result. Used real milk and real butter (because we're not vegan) and they came out delish. I overfilled the tins so the first batch looks more like muffins with holes than donuts but the taste was yummy. Not too sweet, not too "cake" like or too "muffin" like in texture and they were a BIG hit with the kids. I think they each had at least 4 and I'm embarrassed to say I probably ate at least 4 as well. (I hope my Jenny Craig consultant isn't reading this!). Anyway-I give this recipe a thumbs up. I may attempt an egg free fried version at some point but for now these were YUM YUM ;-)

Pumpkin, cinnamon, streusel Muffins. Egg Free, peanut & tree nut free

2011-10-31T10:59:00.001-04:00

It's fall (or is it winter? I'm confused) but this time of year Alexa and I crave pumpkin muffins. A friend posted on FaceBook that she was making pumpkin muffins and I decided to jump on the bandwagon. The recipe she sent me called for 2 eggs so I needed to adapt our muffins to eliminate them. While shopping for some canned pumpkin I came across a box of Pillsbury Cinnamon Streusel muffins. The recipe called for eggs but otherwise the contents were safe for Alexa so I grabbed a box and decided to experiment. The result was a moist yummy muffin that the kids loved and is filled with fiber (if you can get past the sugar topping-which I can). Here is the basic recipe. Fun, easy and tasty. I hope you enjoy them!

Ingredients:
1 box Pillsbury Cinnamon Streusel muffin mix
1/4 cup oil (we used Safflower)
3/4 cup milk (you can also use Rice Milk)
Energy Egg Replacer made to replace 1 egg (1 1/2 tsp replacer + 3 Tbs water well mixed)
1 Cup canned Pumpkin

Instructions:
Follow instructions on box except omit egg and add in prepared Energy Egg Replacer. Add in 1 cup canned Pumpkin. (or more if desired-we actually used 1 1/2 cups but they were a little too moist so I cut it back here.) Fill muffin tins 3/4 way, cover with included streusel topping, bake according to directions on the box and enjoy them while they are still warm.

Please vote for my blog and help me be in the top 25.

2011-10-26T20:12:00.005-04:00

I've been nominated for one of the Top 25 Food Allergy Blogs, please vote for me here. You can vote daily for the next 2 weeks. I've dropped in the rankings and could really use your help. Click here to vote for my blog. Thank you!!!

http://www.circleofmoms.com/blogger/average-allergy-mom?blogroll_id=40&fb_connect_ver=1

Candy Corn, Candy Corn, wherefore art thou Candy Corn??!!

2011-10-08T14:30:00.003-04:00

Finding safe Candy Corn for Alexa has been impossible!! I've looked all over the internet and talked to many people in the allergy community but alas that tricky Candy Corn has alluded us. I heard A&J's Bakery in Rhode Island had some peanut free! Yippee!! They ship it and they still have inventory-YES! then... No. They contain egg white. Why? Who knows...it's not a required ingredient as far as I can tell but they use it so it's out for us. Next, I heard Jelly Belly has peanut safe Candy Corn-YES! then....no. Not tree nut safe and it contains modified soy protein..not for us. BOOO and I mean BOO! This is starting to bug me. I then heard about Candy Corn Flavored Dots. We bought them, we tried them, we didn't like them. Alexa and Nick ate them but they're not REAL Candy Corn so to me it's no substitute. I'm on a mission and in my typical Average Allergy Mom style, if I can't find it-I make it. I have no idea what I'm doing or if they will even taste like Candy Corn but I'm going to give it the old "college try". I also found out I can make them "fondant style" or candy maker style (very involved process!) so I haven't decided which I will do yet. I may try both. I'll post my results when I'm done. This could get interesting. Hopefully I'll figure it out BEFORE Halloween. Stay tuned!

Willfulness, testing boundaries or Oral Allergy Syndrome?

2011-09-19T18:41:00.000-04:00

An article I saw today in Scientific America gave me pause and a bit of guilt. Alexa told Jason and I recently that ALL raw fruits and veggies make her throat itch. We were very surprised by this and questioned her "even watermelon? you love watermelon? what about strawberries? blueberries too?" She held firm, "yes, even watermelon, but I didn't tell you because I really like it." I know about Oral Allergy Syndrome (OAS) and I'm aware that some raw fruits and veggies make her throat itchy (carrots, celery, apples, pineapple) but I didn't know items she had been eating for years (strawberries, blueberries, bananas, watermelon) bother her. When she began complaining she didn't want to eat these regular staples, we questioned whether or not it was true. We wondered if she was testing us. I'm not proud of this fact but it is honest. Initially, I said "ok hon, don't eat them" and discussed it with Jason. He also wondered if she was testing us. This event lead to our first discussion about how to give our allergic girl more power over what she eats. Initially, Jason thought we should push her to continue eating foods she has been eating safely for years. He was sure she was just using her allergy as an excuse not to eat "healthy food". I disagreed. In my opinion, even if she is testing us, she needs to have the power to say no. She needs to feel safe and comfortable eating. I can't imagine being afraid something would make me sick and having someone push me to eat it anyway. My goal is to decrease or eliminate her anxiety about food. In my opinion we need to give her the power to choose what she does and does not eat (within reason and without exposure to her ANA foods). Jason and I agreed not to push the issue until we met with her allergist. The allergist agreed it was most likely OAS and gave us an updated handout. Alexa is very allergic to birch which is part of this OAS issue. So now we put the fruit/veggie on the table and let her decide if wants it. If she eats it, great and if not no big deal. She has started eating watermelon and strawberries again on occasion but is still avoiding all others. I attached the article I mentioned as it's very interesting. I still have some Mommy guilt about not trusting her up front but in my defense, I'm still learning.

http://blogs.scientificamerican.com/oscillator/2011/09/18/allergy-recapitulates-phylogeny/

What do you worry about with 1st day of new school?

2011-09-07T09:47:00.000-04:00

I often wonder "what do average parents worry about when their kids go back to school?" Do they worry about fitting in? Getting along with the teachers? Bullying? Do they worry at all? Quite honestly, with my son, I really don't worry at all. As long as he is smiling when I leave I know he will be happy, healthy and enjoying school. Plus, he's really to young for me to worry about things like bullying or fitting in. But with Alexa it's a whole different ball of wax. Alexa starts her first day of 1st grade at a new school tomorrow. For some reason I'm more anxious about this year than her first year of kindergarten. I suspect it's because this spring she had her first anaphylactic reaction since diagnosis at 18 months. Once a reaction occurs it's a reminder about what can happen and that quick treatment is required. Starting any new school brings questions and concerns, it's just different for us. I remember last year many mothers were worried their child would get lost in the building and not know where to go. I remember thinking "really? If that's the worst thing that happens to her I'll be grateful." I never once worried she'd get lost in the building. I worried she'd have a reaction and an adult would dismiss it, miss it, not have her Epi Pen or panic and not administer her life saving medications. I worried she would end up in an ambulance on the way to the hospital--or worse. The hardest part about this is when you realize most other parents don't really understand this fear. I remember a parent last year saying to me "Whatever anxiety she's feeling about school is coming from you." I was so taken aback. She was right to some degree but it made me realize parents with healthy "normal" kids don't always "get it". My child could die if an adult does not recognize her symptoms, have medication on hand or act fast enough. Do you ever worry your child will die at school? I suspect most parents do not. This is part of life with severe food allergies. We have to learn to trust, breath deep, take safety precautions, educate and pray our children will be safe and fine. I won't lie, it's incredibly difficult for a control freak like me to let go and trust others with Alexa's care. But what choice do I have really? I could home school her but I fear that would rob her of the social experience of school friends, learning on her own, learning to live in the world with her allergies and learning to grow apart and separate from her control freak Mom (ha ha). So tomorrow Alexa will start 1st grade at a new school. I will educate her teacher and school nurse, drop off her medications, provide her with safe food and I will smile and kiss her goodbye. But it will be a difficult day for me. I will try to trust and relax but will be waiting for dismissal time so I can breath a sigh of relief that day one went well for my baby girl.

The Food Allergy & Anaphylaxis Network Walk for Food Allergy:

2011-09-01T10:23:00.000-04:00

The Food Allergy & Anaphylaxis Network Walk for Food Allergy:

Annual Allergy Visit

2011-09-01T10:03:00.000-04:00

Alexa had her annual allergy visit this week. If you have never been through the experience here is what it looks like for us. The process is a little different in NYC than it was in Boston. In Boston our Dr. would order blood work a week before the appointment so when we arrived we could review the results and determine which items to skin test. In NYC we arrive without prior blood work, discuss the previous year's events, evaluate what foods we want to test and the blood work comes later. Also, in Boston, they used these plastic plates with little "prongs" on them. They would load up the panel and then apply it to her back. She could lay on her tummy and watch TV while waiting for results. It made it more comfortable for her and harder for her to scratch if it was itchy. In NYC they use the "fork" method on her arms. OUCH. Honestly, I prefer the Boston method but not much I can do about that since we are in NYC ;-) Anyhoo, here is a run down of the appointment. The nurse weighed and measured Alexa and put is in a room to wait for the Dr. When she arrived I spoke with her about Alexa's year and some challenges we experienced. I gave her a summary of Alexa's last reaction which required an ER visit and epinephrine. She actually was upset and shocked that the ER doctor did not administer Epinephrine right away. She was additionally shocked to hear I had to request Epinephrine but was very please to hear that I did. She reassured me that I absolutely did the right thing and that in the future I should go with my gut and give her the Epinephrine myself. I assured her I would never hesitate again and that I learned a valuable lesson. We also reviewed the new foods she's been eating (kidney beans, white beans, some baked egg) and discussed foods we'd like to add (soy, chickpea, peas). She surprised me by asking if I wanted to skin test tree nuts. I was told if you are allergic to one tree nut avoid them all. The Dr. explained that there is a peanut safe Almond butter on the market and that pistachios are also a good option for some peanut allergic people. I like the idea of adding new foods to her diet so I agreed. After discussing the food items we also talked about her asthma and reevaluated our treatment plan. Basically we agreed on a nebulizer and an increase in some of her medications. One major thing I learned is that I should not be waiting to have her cough evaluated. She explained that even with a "virus" type cough if she is not better in 3 days she should get steroids and be seen. In the past I would wait closer to 5 days because I had been told "kids coughs can last a long time". Also, her pediatrician prescribed us a cough medicine with codeine instead of steroids because she wasn't wheezing. Dr. Kim stated that this is not the right approach. That even though her lungs sound clear there is inflammation which needs to be addressed and the codeine is just masking it not helping it! wow. The Dr. explained that a child with asthma needs to be treated more aggressively than a non asthmatic. Lesson learned!! We moved on to the skin tests. She skin tested: egg, soy, green pea, almond, dust mite, grass, ragweed, birch, aspergillus, chickpea, lentil, black bean, pine nut, and pistachio. There were some great surprises with these results, she is no longer allergic to dust mites and tested negative to black beans, grass and aspergillus. Egg, lentil, birch and soy were the largest positive "welts". Green pea, almond, ragweed, chickpea, pine nut and pistachio were all small reactions so we will wait for blood tests before proceeding with food challenges on those items. Alexa really wants to add soy to her diet but based on her skin tests I'm not sure she's ready. It is a wait and see game now ;-) I am excited to bring black beans into our rotation. My husband immediately texted me Black Bean Soup! in response to her negative test but I'm excited about the black bean brownies my girlfriend told me about! Thanks Cari!! I've posted a photo of her arm after the skin tests for those who haven't what these kids endure with their allergies.

Thanks for the allergies...no, I'm not being sarcastic.

2011-08-05T09:39:00.000-04:00

For our family it has been a quiet allergy friendly summer. I decided to post today to remind parents, especially parents of allergic children, to be thankful for your children's health. It probably sounds strange to be thankful for your allergic child's health but here is why I say this. My friend's otherwise healthy son fell ill suddenly and is still in the Pediatric ICU- 5 weeks later. Events such as this remind me that although my baby girl has serious health challenges she is mostly living a full and wonderful life. My friend's son is a healthy boy who is full of energy. There was no warning leading up to this ordeal. He just fell ill and has been struggling to get well for the past 5 weeks. As I watch my children swim, run, laugh, dance, play and enjoy their summer, I think of this family spending their summer at their son's bedside in the Pediatric ICU wondering when their beautiful son will return home happy and healthy. It reminds me to be thankful EVERY DAY for my children's health. Although I would love to swap my daughter's immune system for one that actually works-or at least didn't go haywire over food, pollen, dust mites, etc.- I'm also incredibly grateful that most of her time is spent playing, laughing, singing, dancing, living life without too much difficultly. So, if you are a parent to a food allergic child, and often think about the negatives that come with it, stop for a moment and be thankful. The majority of the time they are happy and enjoying life. They are not in a hospital bed for weeks on end unable to talk to you. They are not battling cancer for months on end enduring endless procedures. They are out playing, growing, learning and mostly loving life. Yes, there are major challenges, and yes we have to plan ahead and be cautious, but for the most part, life is good and for that I am eternally grateful. So, if I had to choose, I guess I'm thankful for her allergies.

There's still hope for me...a GOOD parenting moment

2011-06-16T20:33:00.000-04:00

So lately my little "angel" has been really pushing my buttons. Correction, she has been slamming, punching, kicking, (you pick the adjective) my buttons. Either way it hasn't been pretty. Quite frankly, I haven't been the best at handling it either. A lot of "don't talk back to me young lady"; "you're not 3 your 6 act like it!"; "stop being mean to your brother" and "if you can't play nicely go play by yourself". On Tuesday, after a particularly BAD Monday, I had what Oprah refers to as an "Ah-Ha!" moment. I started thinking "Something more is going on here". After a few probing questions that were met with "yes Mummy" and "I don't know Mummy", I came around to school and girls. "Honey, is everything ok at school? Are the girls being nice to you? How's Amber been lately?" Whammo! I finally ask the right question. "Well..." she said timidly, "Amber and Shir have been a little mean to me lately." Of course my first instinct was to bad mouth those mean little girls but well, I have to be a grown up and they ARE only 6, so instead I said "Really? What's going on? Shir is usually very nice to you." Immediately Alexa perked up and began spilling her guts, "Shir is usually nice to me but sometimes she's better friends with Amber and then they are mean to me and won't play with me and my feelings get hurt." I got down on my knees, took her by the hands, looked her in the eye and said "Listen Alexa, no matter WHAT anybody says to you, you are a VERY special little girl inside and out. You are beautiful inside and out and LOTS and LOTS of people love you and know how very special you are. God made you special. There is NO other girl in the world like Alexa and that makes you VERY special. Do you understand? I love you, Daddy loves you, Nick loves you..." and I proceeded to list every member of our family. (that list is too long to recreate here) and told her "Always remember how very very special you are!". She beamed the biggest happiest smile back it me and I thought "FINALLY! I got it RIGHT!!" She gave me a big big hug and do you know what? We had a great afternoon and she played beautifully with her little brother. I felt proud but also a bit sad afterwards. Sad that at only 6 she is dealing with friend issues that sting and hurt, sad that I let it fester so long, sad that I was SO damn busy I didn't take 5 minutes to tell her she was special! Yesterday morning as I kissed her goodbye I reminded her, "remember, you are special and LOTS of people love you!" She smiled back at me and today I she came home happy. It feels good to finally get some of this parenting thing RIGHT! Now onto my next mistake.....

Since you asked...lamb and feta empanadas

2011-06-09T20:00:00.001-04:00

Several friends have asked for the recipe for the Lamb and Feta Empanadas I made yesterday. I'm happy to oblige ;-) Keep in mind I made this one up so the amounts are estimated and you may want to adjust seasonings according to your taste. Many on line recipes will add additional seasonings so feel free to experiment! For my allergy friends this recipe is free of Peanut, Tree Nut, egg, soy, and fish. It does contain Dairy (substitute non dairy cheese) and Wheat (dough).

Ingredients:
1 lb Ground Lamb
1/2 Lg Spanish Onion-diced small
1-2 package(s) frozen empanada dough such as Goya (I had left over filling which is why I listed 1-2)
1 package frozen diced potatoes (like the kind used for hash browns. I boiled and diced my own red skin potatoes which took time-this will make it quicker)
1 garlic clove
1 tsp cumin
1 tsp chili powder
Salt & Pepper to taste
1/2 to 3/4 cup feta cheese crumbles
2 Tbls olive oil
1/2 cup (or more) safflower or similar frying oil

Directions:
Defrost empanada dough overnight in fridge. Take them out about 30-40 minutes before using so they are easy to separate. In a medium size skillet add 1 tbs olive oil and sauté onions until translucent and soft. add potatoes and cook until just browning and tender (about 5 minutes). Put onions and potatoes in a bowl and off to the side. Add lamb to pan and brown until no longer pink. Removed from heat and drain off most of the fat and liquid. Add cumin, chili powder, salt and black pepper to taste, stir. Add in the onions and potatoes. Mix to evenly distribute. Toss in Feta (I added enough to mix evenly through without over powering the mix- use your judgement). Mix gently. Separate an empanada disc from the pack and add 1 heaping soup spoon of filling to the center of the disc-enough so there is about 1/4 inch of dough left over when you fold it in half. Fold over and crimp with a fork along the seam. Turn over and seal the other side. Continue until all the discs are used or you are out of filling.

In a separate deep sided saute pan, add oil until about 1/4 to 1/2 inch up the side. Heat oil until just shimmering but do not over heat. Add empanadas and fry until golden brown on one side, flip and repeat. If the end of the empanada does not brown properly, just prop it up on it's side until browned (about 30 seconds to 1 minute). Place fried empanadas on paper towel lined plate and allow to cool for several minute before serving. They go great with a side salad or veggie.

Alternative filling- replace the lamb with beef and the feta with shredded mexican blend cheese. These were equally delicious and popular with my kids ;-) Nick at one with JUST cheese.

Filling

Filled and ready to fry

Frying

Golden brown and delish!

Enjoy!!

Don't forget the substitutes.....

2011-05-31T12:59:00.000-04:00

We just learned a valuable lesson about what to do when a substitute takes over unexpectedly. Fortunately, nothing happened but here's our story. Last week Alexa had a spring concert at school so I had her stay in extended day until the show. A friend dropped her at school that morning. Before the show, we are supposed to drop the children off to the teacher who brings them down for their performance. Alexa casually mentioned that she had a new teacher that day but I didn't think much of it. I dropped her in her classroom and introduced myself to the substitute. "Hi, I'm Alexa's Mom, Susan. She just ate dinner so I want her to have her Epi Pens with her, do you want to carry yours or should she carry them in her bag?" The teacher was stunned. She looked baffled and said, "um, I didn't even know she was allergic. I don't even know where her Epi Pens are." I was shocked and upset but smiled and said, "um ok, that's not good. What would you have done if she had a reaction today?" blank stare. Literally, she had NO reply. YIKES. The she proceeded to show me that she couldn't get the cabinet open (you know, the one that most likely held my child's life saving medicine) UGH!!! I was upset but I said "ok, for now, please have her carry her bag and Epi's to the concert and I will get them from you when we pick her up." My husband could see how upset I was but he said "she's ok, it's ok, we'll talk to them tomorrow." I replied, "yes, thank god she's ok but what did they feed her for snack? What if she HAD had a reaction and couldn't tell them her Epi's were in her bag? In the time it would take for the nurse to get upstairs...." not a good feeling.
SO....lesson learned. I HAD thought about substitutes in the past, but each time I have been the one to drop Alexa at school and I have introduced myself and gone over the plan. This was the first time I had not been there and it was not a good feeling to know the adult in charge had no clue about my child's allergies. Today I spoke with her teacher, who told me she HAD left a detailed note for the substitute (as I expected because she's a great teacher) but that she must not have read through it carefully. I also called the parent coordinator and very nicely explained my concerns. Fortunately, she agreed that it was a serious issue and said she would address it with the principal. Lastly, I told Alexa, "Honey, each time you have a new adult supervising you, you need to introduce yourself, tell them you have allergies, and show them where your Epi Pens are." But I don't believe a 6 year old should be the one responsible for this. The school has got to do a better job of informing caretakers of children's life threatening conditions!! I hope other allergy Mom's learn from this post. If even one parent learns from our mistakes it makes me feel better!

Food Allergy Awareness Week

2011-05-09T10:34:00.000-04:00

Welcome Food Allergy Awareness Week! In honor of Alexa's birthday (Thursday) and FAAW I will be reading a book to her class when I provide safe cupcakes for her birthday. It's special day for us. Also-wanted to share this article I saw on Twitter about food allergy and parenting. Enjoy! What are YOU doing for FAAW??
http://childrenshospitalblog.org/food-allergy-awareness-starts-at-home/

Mother's Day reflections

2011-05-07T12:59:00.000-04:00

A friend recently posted this status on her Facebook account: ♥ I've carried a baby within my body. I've slept with a baby on my chest. I have kissed boo boos, mended broken hearts, been puked on, peed on and pooped on & spent sleepless nights in a rocking chair. But I wouldn't have it any other way. My body isn't magazine perfect, but when I look into the mirror I see a mom, and there is no greater honor or blessing. Make this your status if you're proud to be a mom ♥ I wanted to add a line about being the mom of an allergic child but Facebook has a character limit so here are my reflections and a bit of our story....

I will never forget the call I received from the Doctor. "Are you sitting down? I'm sorry to tell you, you have a very allergic child. Do you have a pen? She tested positive for Peanut, tree nut, egg, soy, dairy, peas, chickpeas and all legumes." I was in shock. I felt sick. I had NO idea what this meant for my child. The doctor gave me the website address for FAAN (Food Allergy and Anaphylaxis Network) and recommended some books and hung up. Shortly thereafter, I went in for Epi Pen training. Sitting in the office with my 18 month old baby on my lap as the nurse explained how to inject her with medication was surreal. The fear, anxiety and stress was overwhelming. The first time I went into a grocery store to shop for food for her I left crying. I went through all the phases people go through when faced with a serious medical diagnosis-fear, anger, anxiety and finally acceptance. I recall telling my sister "Well, if she could die from her allergies, I want to be sure she has as many wonderful life experiences as possible, just in case." I bought books about allergies, joined online web groups, researched, found a pediatric allergist and armed myself with as much knowledge as I could. I set rules, taught myself to make bread, bagels, & croissants and vowed I would keep her safe AND be sure she enjoyed her life. Alexa will be 6 next week and thankfully we have only had one ER visit and one dose of Epinephrine during this time. However, when I hear stories about children who are in comas or have died from their allergic reactions, it reminds me how lucky we are. Her allergens can hide in the most innocent of items but I'm thankful everyday for my precious girl (and my wonderful son). I'm thankful for each day she is healthy and happy and does not have to worry about her allergies or feel excluded or different. I now feel more confident about feeding her, eating out, and leaving her in the care of others but I remain watchful and can never fully relax. I hope other mom's can relate to this story and realize that being a parent can be a challenging job but also amazing and incredibly rewarding. Just look at that face of this beautiful girl!! I pray everyday for a cure or treatment for her allergies so that she may just go out and enjoy her life without worry of hidden dangers. This week is Food Allergy Awareness Week. It would mean the world to us if you would please share this post with your friends in honor of our allergic girl.

Successful Trip to Florida including meals out!!!

2011-04-24T20:34:00.000-04:00

We just returned from our trip to Florida and it was really wonderful! Traveling with a food allergic child can be challenging and a bit daunting but with a little preplanning it can also be very fun and rewarding! We chose to fly JetBlue because they do not serve peanuts and offer a 3 row nut-free buffer zone (one in front one in back plus our row). Delta was out since they serve peanuts and have a pretty lousy allergy policy. I informed the flight crew of Alexa's allergy when we arrived at the gate and again when we boarded. The crew was great and we were very comfortable. We booked a room at the Nickelodeon Kids Resort which not only caters to the kids but also offers "kitchenettes" with a refrigerator, sink and microwave so that we could make safe meals for her. When we arrived I shopped for lunch and dinner foods but was not excited about having her eat microwaved food for 4 days especially since we don't do a lot of processed foods and certainly very limited frozen options. I tried to be creative and find some "healthy" foods. In the end I chose a package of grilled chicken breast which could be paired with a steamed fresh veggie, French bread pizza and White Castle burgers for dinners and cold cuts for lunch. I also picked up some watermelon but planned to order her fruit when we ate out so she would feel included. When I returned from shopping we started planning dinner for that night and Jason asked if the restaurant could handle allergies. I told him, I really hadn't checked. Why? Well, because I didn't want to risk spending our vacation in the ER and thought it would be easier and safer to make her food during our trip. But, since Jason asked, I checked the hotel information book and on the second page and it stated "We can accommodate ANY allergy" and even had an allergy hotline! I was surprised and excited. I called the hotline and got a recording so I went down to the cafe personally. I spoke with the hostess who stated that "yes, we get lots of allergies here and we can accommodate anything-what are her allergies?" I listed them and she told me that the chef would come out and speak with us before we ordered. Indeed, Chef Jonathan came out and spoke with us in detail about how they make allergy friendly meals in clean pans, clean utensils and are very careful about cross contamination. He asked me lots of questions, as I asked him lots of questions and in the end they were able to make Alexa a safe meal that we all felt comfortable with. She chose pasta-big surprise! She was thrilled, we were thrilled and the food I just bought at the grocery store would now go to waste! But we didn't mind because we had a happy girl who was eating out as if she didn't have a care in the world! We ate there 2 nights and she was really happy to eat off the menu like a "normal" kid. On Friday night the grown ups wanted a REAL meal so we went to the Capital Grille. Jason looked up restaurants on Allerdine.com and called the restaurant before making a reservation. We felt comfortable they could accommodate us and they were amazing. The hostess confirmed the food allergies before taking us to our table and the waitress double checked all the allergens again with us. She then spoke with the chef and gave us safe meal options for her. Alexa chose to have a steak, green beans and mashed potatoes. They even surprised us at the end of the meal with a berry plate which had Happy Easter written on it in a fruit syrup. The waitress brought it without asking because she knew Alexa would not be able to eat any of the desserts they offered! Alexa felt very special and said "Mom, Dad thanks for taking me out for my special birthday dinner, this is really so special. It's like it's my birthday!" BTW-her birthday is still 2 weeks away. I was so happy she could eat healthy meals out and not some gross frozen french bread pizza! So thank you to the Nickelodeon Resort, Capital Grille, and Jetblue for a great holiday away with our allergic girl. We're feeling so good about it we are even considering traveling somewhere more tropical next year!
p.s. Happy Easter and thanks to Divvies for a great Easter basket filled with Popcorn, Chocolate bunnies, Rock Candy and Jelly beans!

Our first ER visit from food allergies and Entenmann's Little Bites

2011-03-30T17:14:00.002-04:00

So-in case you haven't heard, we had our first ER trip for a food allergy reaction yesterday and I'm happy to have our first dose of Epinephrine behind us but also VERY grateful that Alexa is almost 6 and this is the first time we have needed either for her food allergies. It was scary but it was not as bad as I had imagined so for that I'm also very grateful. Here's the story and my lessons learned for those of you who have not yet had this experience. I purchased some Entenmann's Little Bites Muffins from Costco. The box contained blueberry, chocolate chip, and fudge brownie. It stated that it contained eggs but otherwise had no other allergy warning. She has just started eating baked egg so I decided to give them a try. As part of my usual protocol, I call any new companies to find out if they label for same facility, same equipment or "may contain" peanuts or nut. For a reason I can not explain, I did not call or look up Entenmann's allergy policy before allowing Alexa to eat them. Lesson #1-follow your allergy rules and stick to them!! I gave her one Fudge Brownie Little Bite. They are about 1 inch around and 1 inch thick. She ate it and immediately said "Mom, my throat is itchy". Uh-oh! I gave her 1 teaspoon of Benadryl and asked her to tell me if it got worse. About 3 minutes later she said "my stomach hurts, I think I need to throw up." uh oh! That made my stomach turn. We proceeded to the bathroom where I gave her a chewable Pepto Bismol and she decided she was ok and would not throw up- but as we were leaving the bathroom I noticed her forehead was all red and bumpy, then I noticed her upper lip was all red, just under her nose. I lifted her shirt and sure enough the tell tale signs of a red rash was starting. This was unlike any previous reactions she has had. She did not have lip swelling, increased cough (she already had one), or "hives" yet just a weird red rash and red patches but I knew it was getting worse which told me "time for Epi soon". I gave her another teaspoon of Benadryl and called the Doctor. Her Dr. recommended that we head to the ER with Epi Pens in hand and if she got better we could always turn around. As we were on the way to the hospital her "red" rash began to look purple, her hives increased and she got very sleepy-(which I have heard is not from the benadryl but part of the reaction itself). I checked her pulse, which was strong, and told the driver to "hurry please" while I prayed NYC traffic would part for us and we would arrive quickly. We were very lucky and we arrived faster than I anticipated and I rushed her in. They took her pretty much right away (although they made me fill out a form first). The nurse asked if I'd given her the Epi Pen and I said "No, but I'm about to". His response was "well next time just give it to her and come". Easy to say when you've never had to actually do it and the thought is terrifying!! Anyway the Dr. checked her out and said "yeah, she's pretty bad but not horrible, I think benadryl and steroids and we'll watch her." For a moment I was relieved but then I thought "wait, I've heard this tale before from other allergy Mom's and they have advised "don't wait for the Epi-it just delays them getting better and they suffer longer." so I decided to talk to the Dr. again. In the meantime, Alexa was playing but getting worse, her hives were progressing and her face rash was more purple than before and they still had not given her any medications. When the Dr. came over I said, "She's getting worse. I know you don't want to give her Epinephrine, but I've think you should. She has more than one system involved, she's getting worse even with benadryl and without it she's going to suffer longer." She was a bit surprised but said, "Well, she'll get jittery and shaky." To which I said, "I'd rather have her shaky and jitter than suffering like this for hours and having it progress unexpectedly." She thought for a minute and said "Well, since she has more than one system involved and it seems to be progressing let's go ahead with the Epiphrine then." PHEW!!! I was still scared but a bit relieved too. They moved her to a bed and gave her a dose of Epinephrin in her arm. Literally within 2 minutes her color changed, her rash disappeared and her hives started to fade! Can you say MIRACLE drug? WOW! I was SO relieved. They hooked her up to heart monitors and we listened to her heart race and flit around for about 10 minutes (which is scary because the monitor keeps setting off alarms and no one comes to check!!) but her color was fine and she was happily coloring so I didn't worry too much. She was observed for 4 hours but we were very fortunate that she did not have a second, bi-anaphylactic response-thank goodness!! Oh and they gave her a dose of prednisolone (steroid) which she will take for 3 days. She's tired today and her cough is worse but otherwise she is doing really well.

So, lessons I learned? Stick with your allergy rules and don't be afraid of the Epi-it's your best friend! Two of my food allergy rules that I broke yesterday, 1) no new foods after 1pm in the afternoon ( I gave her a new snack at 3:30pm) and 2) call or research each new company to confirm the allergy labelling policy (broke that one too! Never called or looked them up!). While I was waiting for the Benadryl to kick in I looked up Entenmann's and if I had seen this first I would have NEVER given her those muffins. They're policy is as follows: "

We assure you that we adhere to Good Manufacturing Practices as established by the FDA. We take abundant precaution to prevent cross contact of allergenic ingredients between batches and, our bakeries are inspected to ensure that they meet or exceed all regulatory and baking industry standards. We understand that highly sensitive consumers need to know when there is even the remotest possibility of inadvertent cross contact of allergenic ingredients during processing. To that end we disclose that the following allergenic ingredients are used in some of our manufacturing facilities and that inadvertent cross contact is remotely possible: milk, eggs, soy, almonds, walnuts, peanuts and hazelnuts (filberts). Wheat is used in all of our facilities and all of our products as an ingredient. Please refer to ingredient labels on our products for full disclosure of the ingredients used in that product.

If you are not familiar with food allergies, you are probably thinking, well that sounds good right?NOPE! It basically says, "we do what is required to clean the machines" or "we hose them down between runs, peanut/nut residue will remain on the machines and your food MAY contain the allergen". It also tells me they don't label for same equipment or may contain which are two BIG ones with us-I don't even let her do "same facility"! I'm 99% sure this reaction was peanut or some other nut and NOT egg related because her previous response to egg has always been fairly mild involving hives around her mouth and has responded to Benadryl quickly-especially baked egg. This reaction was much more involved and complicated and continued to progress even with Benadryl. I'm SO happy she is ok and very happy that the hospital staff listened to my concerns. We've been really lucky that this was her first ER visit and first Epinphrine since being diagnosed more than 4 years ago. Hope our next one is years away or NEVER!

Last minute egg-free feta cheese phyllo "cups"......

2011-03-17T14:32:00.000-04:00

We had another home visit scheduled for Alexa's class today. In case you haven't been following the trend, I managed to get the teacher to agree to "no food" at these visits after the first fiasco but then she went on maternity leave and the flood gates opened and now ALL the parents are providing food at their visits. So, this leave me checking with each parent before each visit to find out what they are serving and if I need to make a substitute item and/or attend the visit for safety reasons. The mom for today's visit emailed me Monday to tell me that they were making "feta pies" using egg, feta cheese, and phyllo dough and wrote, "please let me know if would be hazardous to Alexa." I emailed her back immediately and said "Thank you very much for passing this information along. Alexa is allergic to egg so that will not work for her but if you could email me the recipe, I will try to create a similar item to send along with her on Thursday. Thanks again!" Well, we all get busy with life, and she didn't send the recipe along. Since I knew this might happen, I bought the feta cheese and phyllo dough and planned to experiment and try to make something similar for Alexa to bring with her. Yesterday was one of those very busy days and by the time I got the kids to bed at 7:45 p.m. I was exhausted and didn't feel like experimenting in the kitchen but skipping it was NOT an option. I just couldn't imagine sending Alexa along to the home visit and making her watch while they all cooked and ate the feta pie and she snacked on crackers or whatnot. I researched some online recipes and found that folding the little triangle thingys looked WAY to extensive and complicated for my tired Mommy brain so, instead I opted to make phyllo cups in a muffin tin. I mixed together the feta cheese with a little cream cheese, basil, and fresh ground pepper. I cut the phyllo to smallish squares, fit them into the muffin tins to make a "cup", brushed the phyllo with a little butter, put a small amount of the cheese mix in the center and cooked it for about 7-9 minutes until the edges of the phyllo where well browned and it seemed the bottom dough would be done. The result was a bit salty for my taste and the phyllo was crumbly in some places and a little underdone at the bottom but not a total failure. I sent her off to school with 3 in her bag and hope that I hear good reviews tonight. I'll let you know the verdict. Oh, life with food allergies is always interesting!!

Practice Your Epi Pen

2011-02-23T15:08:00.000-05:00

Just a quick post to report on practicing the Epi Pen. I'm embarrassed to admit it but in the 4 years since Alexa had her first anaphylactic reaction I've never ever used an Epi Pen. I thank God she hasn't needed it and now I'm thankful that my first time using one wasn't on her! We have some expired Epi Pens in our medicine cabinet. My husband and I have been saving them to practice but just never got around to it. I was cleaning out the refrigerator the other day and noticed a grapefruit I was going to chuck and thought "I should use that to practice on". I got out the Epi Pens and went through the entire procedure. I'm so glad that I did! That "click" that you are supposed to listen for is more of a loud "THUD" and you can clearly tell that the pen has engaged. I always worried I wouldn't know if it had truly worked or not since some people have said "you won't hear the click" and others have said "listen for the click". There is no denying that loud "THUD" noise the pens make. I even did a second one to be sure that was normal and what to expect. My expired pens were the old Epi Pen Jr. design but I'm assuming the ones will work in a similar manner. My lesson learned? PRACTICE! Get comfortable with them if you've never used one. I have a higher level of confidence now that I have and I will be encouraging my husband to practice too.

Another successful meal out!

2011-02-17T10:13:00.004-05:00

Last Saturday we had tickets to Rabbit Sense at the TaDa Theater. We thought it would be nice to have dinner with friends and the kids afterwards. For most families this simply entails finding a decent kid friendly place near the theater. Not so for us. While I easily could have packed a meal for Alexa, she's getting older and 3 of her friends would be with us. If we were going to eat out, I really wanted her to feel like a one of the group and not "special" but I also wanted her to be safe and to not have to stress about the food. So my husband and I spent over an hour scouring the internet on separate laptops. The goal was to find a decent restaurant-not too pricey that would be safe for Alexa and great for the kids and grownups alike. Now THAT is a tall order! We looked at websites like http://www.allerdine.com, http://www.foodallergiestogo.com and finally http://allergicgirl.com. On http://allergicgirl.com we found a note from a allergy Mom which talked about their great experience at Blue Smoke http://www.jazzstandard.net/blue/index.html. Both of her children have nut allergies. After looking at the location and food options we noticed they are kid friendly AND have a nut free menu! Fabulous! While Alexa has more allergies than just nuts, peanut and tree nuts are her most dangerous so I was please to find the nut free option. We called ahead and talked to a manager who assured us they could accommodate our needs. Bravo!! After the show we headed down to Blue Smoke and Alexa was able to order off of the children's menu. She had elbows with butter and mashed potatoes. A bit of a carbo load but I'll take it!! Unfortunately, she wasn't able to eat their ice cream or any of the desserts because they all contain eggs but she took the news like a trooper and didn't cry or make a scene. I promised her a cookie when she got home but she was so tired from all the excitement, she completely forgot. All in all it was a very, very nice meal out and the first time we have eaten out as a family with friends and not brought a meal for her. We really enjoyed it. A big thank you our friends, AllergicGirl and Blue Smoke for a lovely evening out we will remember fondly for a very long time.

Even careful Allergy Moms can slip up....

2011-02-08T11:04:00.000-05:00

It was my son Nicholas' 3rd birthday on Saturday. Happy Birthday Nick! On Friday I baked cupcakes for his school party. I made a safe mix(well it had eggs but Alexa would not be eating them) and bought what I thought was safe frosting from Fresh Direct. When my delivery arrived, I noticed that the frosting containers stated "made on the same equipment as tree nuts". I called the school to see if this was ok for the nut allergic children in my son's class and it was. So, I made the cupcakes and put the left over vanilla frosting in the fridge. On Saturday morning-as I was racing around to prepare for Nick's party, I asked Alexa if she wanted vanilla or chocolate frosting on her cupcake. She asked for vanilla with sprinkles. I frosted it and set it aside for the party then ran off to decorate and set up. The party went great. The kids enjoyed the clown/puppet guy and then we sang Happy Birthday and blew out the candles. As I was cutting the cake and handing it out, I looked over at Alexa licking the frosting off her cupcake and first thought "oh, Lexi don't eat it like that" and then I FROZE and thought "oh NO! That's the WRONG frosting!" For a moment I could not remember if it was "may contain" or "same equipment" as tree nuts. I excused myself, whispered to my husband and ran upstairs to check. Thankfully it was "same equipment" and I relaxed a little but had to watch her for the rest of the afternoon. I was really kicking myself for making such a stupid mistake. What if it was a "may contain" frosting? I broke my own rules about having these items in the house and put her at risk. Thankfully, it was a very small risk. I now have my black sharpy pen on my counter and anytime anything comes in with "same equipment" or "may contain" it's marked with big black X so everyone, including a rushed Mommy, remembers not to feed it to Alexa. I made an exception to my own rules and learned a good lesson in the process. CHECK YOUR LABLES every time, follow your rules and slow down. I'm very thankful Alexa didn't get sick Saturday since she had a friend sleeping over and that would have really ruined it. Perhaps after reading this post people will now understand why it is difficult to trust others with our allergic kids. Even Allergy Mom's can slip up.....

Great school meeting today-what a relief!!

2011-01-24T19:53:00.000-05:00

So-I have a confession to make. When Alexa started at her new school, I did not schedule a meeting with the principal. I asked them what they needed regarding paperwork, etc to keep my allergic girl safe. I dealt directly with her teacher, the nurse and briefly with the Parent Coordinator, but I did not schedule an appointment with the Principal. Why? Well, I didn't want to be labeled "the allergy parent" or considered a problem as a new parent to the school. In hindsight-this was a mistake. Lately, I've been reading a lot of allergy stories about reactions in adults and children. These stories seem to keep popping up in front of me. Yesterday, I thought to myself-"the universe is trying to tell me something-there's a reason I'm getting all these warnings. I need to take action". So when I dropped Alexa off at school, I stopped into the office. I was not prepared. I did not think through what I would say or practice a speech but I knew-I wanted my kindergartens' Epi Pens with her at all times. I hope she will NEVER need them but hearing all these stories I've learned having Epinephrine nearby is CRITICAL. I will admit, I was nervous to approach the Parent Coordinator, I wasn't sure how they would react. If they would be annoyed. If they would think I was asking too much, if they would think I was telling them how to do their jobs, if they would think I'm a nervous, controlling, allergy Mom. But I knew I had to ask. SO-I popped my head into the office door and quietly asked if I could have a moment of the Parent Coordinator's time. She said "of course". I took a deep breath and said "lately, I've been hearing about allergic reactions where Epi Pens have been the saving grace and a critical component to a good outcome. My husband and I talked and we feel Alexa should have her Epi Pens with her in every class or she should wear them. The time it would take to retreive them from her class room or nurse could be the difference between life and death. For now, could the teachers pass them off as she transitions from class to class? I will be ordering her a belt so she can wear them, but for now-I would like to use this procedure." Her response? "of course dear! Here, this is something you should talked to Dean about, come with me" (Dean is the Principal) She ushered me into his office. He was very friendly. I introduced myself and gave virtually the same speech. He said, "well yes of course, where are her Epi Pens now?" She has a set in her home room and a set at the nurse. After a brief discussion, he said "well really, I would like each of her teachers to have a set of Epi Pens in their room and have training as a refresher on how to use them. This way, we don't have to worry that someone forgets to hand them off, AND we know everyone has been informed and trained." WELL! That was not what I expected and it was actually a better idea since it will ensure they are all aware and trained! woo hoo! This lead to a discussion about allergies in the school and I mentioned to him that a 13 year old girl from Chicago had died at school just before Christmas. They were aghast. I explained that it was a school Christmas party and that because of a paperwork issue, the school did not administer Epinephrine and they could have saved her. They were shocked and asked all the same questions I asked when I hear that knews. "Wait, what? I don't want to blame the victim or the parent but she was 13-did she have them with her? Was she wearing them? Why was she eating Chinese food? Why didn't they administer the Epinephrine?" BINGO!!! I was relieved to hear they know what questions to ask, they know what should be done, and they had a similar reaction to me! This also brought up the question of "well what do you expect us to do if she has a reaction? Some parents want us to call them first before doing anything." So I told them, 1) give her the EPI Pen first, 2) call 911 3) call me. I would rather have them give her the medication and be wrong then NOT give it to her and be wrong. I can not tell you how happy I was to have this discussion. When I picked Alexa up today I asked her teacher, "Did Dean talk to you today?" I was so happy to hear her say "yes he did. Let me know when you get the Epi Pens and I'll make sure they get to her teachers. We will also all have refresher training." AWESOME!! Of course on the way home I was thinking "why the hell did I wait so long to talk to them?" idiot. I'm just lucky that nothing happened to my daughter during the last 5 months! So now I feel like the school is better informed, they know me, they don't think I'm crazy, and the Principal will make sure Alexa's teachers are trained and ready to care properly for her. Lesson learned: make an appointment with the Principal when you start a new school. HAVE the conversation. If it goes badly, its the wrong school, or you need to advocate harder for your child and her needs. So happy with this outcome!! I pray to God Alexa NEVER needs that damn Epi Pen but now I know that if a reaction happens at school, those caring for her are prepared.