Friday, February 3, 2012

Food Allergies, they are real and not just something to inconvenience you

As you may, or may not, know Bubbie had SEVERE food allergies for a long time.  Thankfully, he has out grown most of his so we have a mostly "normal" life, now.  But before, my life was consumed with worry and guilt.  Yes, I was THAT mom who caused all the other parents to have to limit what their kids could have for snacks and treats in the classroom.  Of the 8 main food allergens, Bubbie was allergic to six.  At one time he could have no wheat, eggs, dairy, soy, peanuts, or tree nuts.  He also had oral-allergy syndrome, which is when seasonal allergies mimic food allergies (and if you think this sounds easy, take a look in your cabinet at the ingredients in some of the foods you use daily).  During Spring and Summer, he also could have no melon, avocado, banana, apple or pear.  

We found out about his allergies when he was only about 2 months old.  I was still breastfeeding and he was not gaining any weight and started having severe gastrointestinal issues.  Just imagine you go to change your baby's diaper and it is filled with bright red blood.  Bubbie was living in constant pain from the damage what I was eating was passing into his food.  He had serious reflux, and no lie, would spit up so violently that it would hit the wall 3 feet away if he was on my shoulder.  I kept taking him to the doctor, and they were stumped as well.  Finally, they did a scratch test, and found out he was allergic to pretty much everything I was eating "to keep my milk supply up."  Talk about mommy guilt.  You think you are doing the absolute best thing for your child, only to find out that what you are doing has been slowly killing him.  And here's the thing, Bubbie was the happiest baby in the world! Oh, and because he was allergic to dairy and soy, there were no formulas available, so I had to limit my diet of all 6 of his allergens as well.   

When he finally was getting relief from his allergies, he would hit himself.  I asked the doctor why, and she said it was because he had never lived without pain, and to him being in pain was NORMAL.  Sick, no?  I learned more about alternative food sources, reading labels, creative cooking, and recognizing allergic reactions to foods than I ever wanted to.  But it was worth it, because this is what Bubbie looked like 6 months after we figured out a good diet that worked. 
I can't eat many things, but I do eat a lot!

I thought that my coming up with menus and foods that would satisfy and nourish him would be the hardest part of dealing with food allergies.  But it wasn't.  The hardest part was all the other people in the world and their opinion that I was making it all up or overreacting.  Restaurants would not allow me to bring in foods or drinks for Bubbie, so we quit eating out.  Daycare providers would give him things to eat they KNEW he couldn't have because he begged.  But they weren't the ones up all night with a poor child screaming in pain and banging his head on the ground because IT HURT SO BAD.  When Manudo had a birthday party at a very popular kid's venue named after a mouse, they refused me permission bring in a cupcake for Bubbie so he could take part in the celebration too (I did sneak that damn cupcake in anyway). 

Friends and family could be a challenge too.  Bubbie was not anaphylactic in his allergies.  He would suffer mostly through gastrointestinal distress and/or skin rashes.  Many times friends and family would make comments asking if a little bite of cookie/cake/pastry/pasta/etc would really hurt that much...the thing about food allergies is they are not like environmental ones.  You never ever know when your reaction will change in severity or manifestation.  I have a friend who had what he thought was food intolerance to almonds.  He would eat them, and have stomach issues, but nothing really severe.  One day he ate an almond and went into anaphylactic shock and almost died.  Think of food allergies as cumulative and not episodic.  Every time you ingest something you are allergic to your body registers it and adds it to the amount.  Each individual "bite" is not just a bite, it is a bite added to all the other bites you have ever had and you have no idea where your breaking point for severe -v- mild reaction is located.  So yes, just one bite could have hurt him, a lot. 

At the back to school orientations every year, many of the other parents would roll their eyes and complain that they couldn't send peanut butter sandwiches for snacks to school, or cupcakes and cakes for their precious off-springs birthday party in class.  I never spoke out, but inside I was screaming "Is your child's peanuts and sweets more important than my child's LIFE?!?"  Is it really that big of a deal to read a freakin' label and/or be empathetic or even GRATEFUL that you don't have to feed that kid daily?  And, what the Hell is up with birthday parties in school?  We never had them when I was growing up, is it part of societies worship of children and everything they do that we must now celebrate their birthdays 3 times (school, friends party, family party)?

Your kids peanuts are not more important than THIS kid's life!

Anywho, as Bubbie grew older, it seemed like every year he had fewer and fewer food allergens.  Just imagine the look on his face when he got to have his very first piece of cake that was made from real ingredients!  And here is the kicker, he suffered so much pain as a young child that he was AFRAID to try many of the foods that were deemed okay.  We had to go through food challenges where a very tiny bit of the food/allergen was introduced for a week.  The next week you added a bit more, the next week a bit more, etc. until you reach the equivalent of a serving.  Some of the foods still bothered him, even though he wasn't technically allergic.  Those were the days that were tough, here I am telling him "It's okay, the doctor said you can have it," meanwhile an hour later he was curled in the fetal position looking at me with his huge blue eyes like I disappointed or lied to him.  *sniff*

He is now almost 9, and still has oral allergy syndrome and an allergy to tree nuts, but he no longer has to sit at the allergy free table, carry an epi-pen, answer 10000 questions about his medical alert bracelet, or be known as THAT kid.  However, in my mind, I still have intense fear for him and watch out for any type of response he may have to what he is eating.  I know how lucky he is to have outgrown his allergies, as well as to not have the anaphylactic reactions to his allergies that many children and adults suffer. But he could, and the doctors do say that just because he outgrew them for now, doesn't mean he will be allergy free forever.  He could develop them again, or develop allergies to different things.  It is like living with a Jack-in-the-box waiting for the new issue to pop up sometimes.   

I will NEVER stop being an advocate for other parents who are going thorough what I did, and I ask, no BEG, you to please think of your own children/grand-children/nieces/nephews and how you would react if a request was made to help them fit in and/or save their lives.  At the end of the day, we all love our children, but maybe if we loved other people's children a little more life would be easier for ALL children.

I could be your child, wouldn't you
love me enough to protect me?

Until next time,

p.s. I would love to hear your thoughts/comments/etc regarding this, or any post I write.  Leave a comment!


  1. Excellent post Nic-very educational!


  2. We are dealing with celiac disease and you're right ..people don't understand...The comment I hate the most is "a little won't hurt" It will, so please when i say NO listen and hear me. So happy your son is doing well. I totally understand the long hard road you traveled..Good luck in the future...


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