Tuesday, May 31, 2011

Don't forget the substitutes.....

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!

Monday, May 9, 2011

Food Allergy Awareness Week

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??

Saturday, May 7, 2011

Mother's Day reflections

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.