Monday, January 24, 2011

Great school meeting today-what a relief!!

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. 

Sunday, January 23, 2011

Learning from other allergy Moms...

Last week I blogged about how challenging and frightening it is to have an anaphylactic child coughing and vomiting.  You just don't know if it's just bug or if it's an allergic reaction. So I want to share a story from another allergy Mom about her daughter Vickie...I think her story is an important one....

One thing I know for sure,  Mom's should ALWAYS listen to their instincts.  Pre-diagnosis, Alexa was very sick-vomiting every day-sometimes 2 or 3 times a day.  I KNEW something was wrong-it was just nagging and nagging at me.  I kept talking to people about it, but everyone said "she's fine-stop worrying"  That nagging feeling continued.  I kept track of what she ate and when she got sick and realized she was vomiting 2-3 times a day!  I took her to a Dr.,  he told me "it's constipation, cut back her milk".  I left his office thinking "He's a QUACK-something is WRONG with my child!"  It wasn't until after Alexa had an anaphylactic reaction to peanuts that we found out she had multiple allergies which she had been consuming daily and were causing her to vomit and have a constant chronic cough.  I've learned so much since then.  Allergy mom's need to share their stories, learn from each other, and listen to their instincts!

Friday, January 21, 2011

Anaphylaxis and the coughing nightmare

I'm sure I've blogged about this before since it's on my mind I thought I would write about it again.  Last night we had another of those weird, scary nights where I almost injected Alexa with her Epi Pen.  She has had an ongoing cough for 3 weeks but we've been watching it and giving her her inhalers.  Yesterday, she had a concert at school so (for the first time) I sent her to "extended day" and she stayed at school until 5:30 pm.   I had packed her a snack so that I didn't have to worry about what they were serving or if the teachers knew what to feed her.  When I picked her up,  I gave her the pizza I brought for her-our typical Thursday night Papa John's pizza.  After she completed her performance we headed home.  On the way home, she coughed a little and complained "I'm so tired, I just want someone to carry me"-given the circumstances we chalked it up to exhaustion from the long day and all the excitement.  As she was going to bed she said, "my tummy hurts Mom."  This gave me pause, but seeing how she had just guzzled down her milk, I thought that might be the cause (even though my mommy instinct said "beware-check on her".)  Sure enough, about an hour later she woke up coughing with that tell tale "I'm gonna puke" sound.  I'm sure you Mom's know what I'm talking about.  I rushed her to the bathroom where she promptly got sick but that cough-that damn cough-it didn't stop.  Hacking and hacking-gasping for breath-it was really, really frightening.  I kept asking her to calm down, breath, talk to me, does your throat itch? does it feel tight? what's happening honey? She just kept hacking, heaving, and gasping.  I told my husband to please get the benadryl (my first line of defense when this happens with her).  I gave her some, but the coughing continued.  I gave her a sip of water, but the coughing continued.  I started to wonder what was going on.  Could it be the pizza? Is it possible her pizza could have been contaminated somehow? Was this a delayed allergic reaction? I was very worried.  I asked her if she had eaten anything else at school, something I hadn't packed for her, nothing.  I gave her albuterol and although the cough continued it lightened up alittle.  She started to talk to me calmly, her color was good and everything seemed ok.  She just wanted to go back to sleep. So,  I tucked her in with us so I could watch over her.  She coughed ALL night.  Not like every 10 minutes like every 1 for hours! Nothing helped.  More albuterol, more benadryl, humidifier, cough drops, ice chips, nothing.  I was worried sick and exhausted.   At 3am she started screaming that her throat hurt when she coughed.  I checked her throat and sure enough it was red and swollen.  I gave her some throat spray and fed her a popsicle to sooth her throat.   When she was done she went back to bed.  At 3:30 am she finally stopped coughing and feel into a deep sleep.  She slept until 7am when our alarms went off.  Today I'm left wondering, could this have been allergy related? She's coughing today but not too badly, no fever and her throat looks better than last night.  When you have a child who is anaphylactic and asthmatic these situations can be SO scary.  I really worry that I'll make "the wrong call" and fail to give her Epinephrin when she needs it.  Anyone out there have any advice for me?  We are headed to the Dr. soon to review everything but I'm praying for a nice, quiet, sleep filled night tonight for all of us.

Saturday, January 15, 2011

Cherrybrook Kitchen mix & the Easy Bake apologies Hasbro

Before Christmas I posted about my frustrations with Hasbro and the Easy Bake Oven.  Initially, I was very annoyed that all the mixes have a nut allergy warning but then I decided Santa would deliver an Easy Bake Oven that would be safe for my special girl.  Santa and his elves used Cherrybrook Kitchen sugar cookie mix to create individual mixes just for Alexa.  Santa even placed a special note inside the box which read:

"Dear Alexa, I understand that the cookie and cake mixes for the Easy Bake Oven are not safe for you, so my elves and I created special mixes for you to use.  I hope you enjoy them.  Please tell your Mom she can use Cherrybrook Kitchen mixes in your oven when these special mixes run out.  Love, Santa"

She loved it and Christmas Morning we made safe sugar cookies even though we were in a hotel.  We haven't really used it since...bad I know...but hey, we're busy!  Today Alexa begged me to use her oven and said she wanted to make cakes instead of cookies.  Fortunately, I had some Cherrybrook Kitchen yellow cake mixes and we made 9 mini cakes.  My little baker was all smiles!  So Hasbro, sorry I diss-ed you-the oven is pretty fun and Cherrybrook Kitchen, thank you AGAIN for putting big smiles on my little girl's face!!  This is why I buy your mixes by the case!!

Thursday, January 6, 2011

In honor of my sisters.......

I'm a bit overdue but need to take a moment to write about the joy of spending a holiday at someone else's home this Christmas without the worry and stress!  I'm not sure either of my sisters understand the magnitude of what they did for us or how immeasurably grateful we are.  So this post is in their honor.

Almost all parties we attend require the following: packing safe food for Alexa; inspecting all food upon arrival; explaining to Alexa the items which are safe and which are not; reminding her not to eat off other's plates or share snacks or drinks; putting aside a plate for her before everyone dips into safe foods with nut or egg contaminated hands or utensils; watching what the other children are eating to keep track of who's eating "danger" foods and watching my child throughout the party to ensure she's okay.  This Christmas was extra special because we could relax and know our daughter was safe.  Not one peanut or nut was present!  My amazing sister Noreen, checked in with me over every ingredient, asked lots of questions about safe food brands and even made my little girl her very own egg free lasagna!  She also made Cherrybrook Kitchen sugar cookies, Chocolate Covered Sunbutter balls (that I was supposed to make!) AND checked in with my sister Karen about desserts.  Karen not only brought nut free desserts but also went out of her way to make special nut and egg free cookies just for Alexa!  When she put them out she explained how she cleaned her pans, made the egg and nut free cookies first, packaged them and put them away before making any cookies containing egg or nuts!  How do you express you appreciation for this kind of care and forethought?  How do you explain how much it means to be able to attend a party and relax and enjoy yourself without worry about the food on the table?? A simple "thank you" does not seem sufficient.  So Noreen & Karen, thank you for your thoughtfulness, your time, your love, consideration, forethought, hard work and for making this Christmas one we will remember for a very long time!  You will never know how special you made it!