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

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?

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?

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:

The Food Allergy & Anaphylaxis Network Walk for Food Allergy:

Annual Allergy Visit

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.

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

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.....