Friday, September 6, 2013

Navigating the Food Allergy World for the First Time

I found this saying last night...and I could not have found a better description for my purpose on this planet.  In 100 years, it truly will not matter how much money I had, how big my house was, or what kind of fancy car I drove...but maybe, just maybe, through my advocacy for children living with food allergies, in some small way, by making others aware and trying to educate the public about food allergies, I may have made a difference in the care a child received, their quality of life, or in the way they were they were treated.  It is my highest hope that maybe I helped to save a life.
Maybe that difference made will be that somebody stuck up for a child being bullied because of their food allergies.  Maybe a child who normally felt left out because of having to sit at a peanut-free table in the lunch room will be able to sit with ALL of his friends at lunch because the school administration finally decided that NO peanuts were allowed in the school.  Maybe someone will recognize the signs of anaphylaxis and allergic reactions and their response time to help will be quicker. 
Here is my advice for those who are new to food allergies and need some guidance:
As a mom of a 3 year old who has a peanut, milk, and egg allergy, I cannot stress enough the importance of awareness and being thoroughly educated when it comes to food allergies and safety.  You can never be too careful when it comes to avoidance.  If you think it may have an allergen in it, DON'T even attempt it.  
I can assure you that you will never be disappointed in yourself for being over-protective, but I can, without a doubt, tell you that if something ever happened to my child due to negligence on my part, I could never live with myself.  Some people have insinuated that I would put my child in a bubble if I could, but that would not be a very fun childhood (for him or for me).  There has to be some sort of balance.  And so, we have tried to live in harmony with those three little evil foods that make him really sick.  They stay away from us and we stay away from them.  It takes a lot of planning and you have to be very meticulous, but you also have to let kids have as normal of a life as possible.  Let them be little.  There are so many fun things you can do with foods that are safe for your child.  And when they are grown and have children of their own, they won't remember "Aw man, Mom was no fun...she would never make me scrambled eggs".  They will be calling you saying "Hey, Mom...can I have that recipe for those cinnamon rolls I used to help you make before Church on Sundays?  Ya know, the ones with no eggs-- my favorite. " Or "Remember that time we made the Star Wars cake from scratch?  That was so fun".
Label reading is enormously time consuming, but well worth it to know exactly what you are putting into your child's body. makes it a little easier to sleep at night knowing that he won't break out in hives or have horrible GI problems or stop breathing because he ingested milk and egg.  Or God forbid, peanuts.  I HATE PEANUTS.  There, I said it.  As far as I am concerned, they can be permanently erased from the face of the Earth.  (Sorry to all of you who love peanuts, but I love my child more). 
Another difficulty when it comes to reading labels, is figuring out all of the names for the various allergens.  Check out to become better educated on product safety and labeling.  You can never be too educated:)
It is really important to create a good relationship with the allergist who is treating you or your child.  They can provide a great support network, advise you on diets, and also refer you to other medical professionals who will be of great benefit to you.  (Think dieticians and nutritionists). 
Make some friends at your local organic/vegan/health food stores.  They have a wealth of information about various sections of the store and what products they carry that will be safe for you or your child.  Trust me, these stores can get really overwhelming just after a few isles.  And then 100 different kinds of soymilk.  Do I try the flavored ones?  Do I stick to full fat or the light version?  Which brand is the best?  Is organic better?  AY AY AY!  I will let you in on a little secret- I think I tried at least 15 kinds before I could get my little guy to comfortably accept one.  And it took weeks.  If you are feeling frustrated, you are not alone.  We have all been there.  Go into the bathroom, close the door and scream in the shower if you have to.  You will feel better.
Make sure anyone who is responsible for caring for your child has a safety plan in place in case of an emergency.  This includes school, daycare, and babysitters.  Don't worry that you will come off as a control freak to these people when you have them follow your plan.  Those who you entrust to care for and love your child will be right beside you making sure your child has everything needed to stay safe and healthy.  And don't be afraid to lean on them.  Reassure these caregivers that you have complete trust in them and really appreciate all they do to keep your child safe.  They probably already know you trust them, it's not like any of us would ever leave our child with people we didn't know, or anyone who hadn't been trained on how to use an Epipen.
Do your research.  Read, read, read.  And then ask questions.  Talk to other parents and see what strategies they have come up with.  I once read "A concerned mother does better research than the FBI".  This could not be more true.  Go ahead, laugh.  It's Friday!
Most importantly, at the end of each and every day, remember to BREATHE!!!!!!!!!!!!  If you don't, you are no good to anyone.  Tell yourself everything will work out and tomorrow is a new day.  Have faith that you have done the best you can and don't be afraid to ask for help when you need it.  After all, there is not one person on this planet that knows everything about everything, which is why God gave us doctors and the Internet. 
I will leave you with my little boy's favorite cinnamon roll recipe (dairy, egg, and peanut free) from Sugar Bomb Baker Blog:)

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