Friday, March 7, 2014

The Emotional Evolution of a Food Allergy Mom

My first and only child was diagnosed with an anaphylactic dairy allergy at 4 months old.  This discovery was made on a Sunday evening while I was home alone. I had no idea what was happening to my baby and there really wasn’t enough time for the fear to set in.

After a few days in the NICU, and many consultations, the doctors and I had a pretty good plan.  I would avoid eating dairy, we would use epi if she showed signs of anaphylaxis, and life would go on. The allergist said anaphylaxis is serious, but manageable. Her parting words were, “give her epi and she will be OK”.  So I moved on with life, and still had very little fear.
Fast-forward 6 weeks and I’m sitting in the allergists office learning that my tiny baby is also allergic to eggs and peanuts. At this point I realize I’m in over my head. I don’t know what to eat. I need help!
I went online and started researching food allergies. This is where my fears were brought to life. I was bombarded by stories of death and how children with food allergies get left out. How their lives are lived unfulfilled. On Facebook boards, statements like “Allergies can change at any time, so past experience doesn't mean your kid won't die next time” and “all food allergies are life threatening” were daily banter.
On some sites, there is a “group think” phenomenon that takes over.  Advice is given to keep your child away from the playgrounds, and that completely banning food is the only way to keep you child safe. If another parent disagreed, inevitably a handful of people will begin to bully, and statements like, “what if you do something wrong and your child dies” or, “You’re obviously not worried about your child’s life being in danger” would come into play. I had seen my baby in anaphylaxis and all I wanted was to keep her safe, everyone else be damned.
When it was time to start daycare, I had to find a way to make the staff understand that my child’s life was in their hands. I didn’t walk in prepared to educate or advocate. I went for the shock value. I didn’t say she had allergies, I said she had life threatening food allergies. I told them, in graphic detail, all the events of each anaphylactic reaction she had ever had. I did not tell them about the weekly small reactions that happened. I didn’t tell them that I understood how difficult it was going to be to avoid contact reactions to dairy in a room full of baby bottles. I didn’t even discuss that much pertinent information with them. I basically said, she only eats the food I bring and if you feed her the wrong thing you have 5 minutes to give her the epi or you’re going to kill her. It may seem like using scare tactics is the way to go, but each time I preached it, the monster in my mind grew a little more. Fear
A year and a half, and lots of anxiety later, Christmas comes along. My 4 year old nephew tried feed my daughter a cookie. When I looked down, he was holding the cookie against her closed mouth.  I reacted instantly. I snapped that cookie out of his hand, threw it across the room and began to verbally assault my family. I didn’t see a 4 year old trying to share. I saw someone else’s child trying to poison my child. I saw my mother as the woman who put more value in a cookie than my child’s life, and my sister in law as an enemy. I saw “them” vs. “us”.  My family just kind of settled into a stunned silence as I went nuclear. You see, I had taken the visceral hatred I had for the food and extended it to the people who were eating that food as well.  The people I loved!
They had no idea what the big deal was. They were not educated on food allergies. I simply demanded that no allergens be served, or we weren’t coming (even though I wouldn’t allow my daughter to eat “their” food) I failed my family by not educating them, and my stubbornness about keeping all allergens away at all times had actually backfired and put my daughter in danger. If I had educated my family on allergen controls and learned, myself, how to keep my child safe in an allergenic environment instead of demanding a food ban in my mother’s home, no one would have been sneaking cookies. Let me say this one more time.

I yelled at 4 year old and took his cookie away. He wasn’t even my kid!

I went home and called the only other FA mom I knew, looking for support. She’d been at it for years. Her statement was simple, but it had a profound effect on me. “No one wants to be the person who hurts your child.” That’s when I realized there was a major problem, and it was me. My mind had focused so much on what “we” were losing, that I had totally lost touch with reality. I was mourning the healthy child I didn’t get and at the same time fighting as fiercely as I could to keep the baby I had safe.  There was so much sadness, guilt, and anger in me.  I had to fix myself before I could fix my family.

What I failed to realize in the beginning is that it’s really difficult to live a fulfilling life with the boogeyman in my head. Does it keep our children safer to imagine all the catastrophic events that could happen? No, I believe it has the opposite effect. You need to have a clear head when treating an allergic reaction, and having a constant fear of “what if” is going to hinder your ability to treat your child effectively. For some reason, even today, I will find my mind wandering down that path.  The trick is to recognize when your mind is drifting and redirect it. I remind myself that she knows how to avoid her allergens. She knows how to use her epi pen and call 911. Every adult she is ever with is epi trained; basically, anything to redirect my train of thought.

We’re surrounded by negative stories. Every death that happens is plastered all over social media. Every school that violates a 504 or simply makes a mistake is demonized. The chat boards are flooded with pictures of young children, mid reaction. All these things do is propagate fear. Fear that we can't trust others and fear that our children will die. The reality is we have more medical technology at our disposal now than we ever did before, yet we live with more fear and anxiety than past generations did.
We have to change our way of thinking, if not for ourselves, than for our children. In 2009 a study was done researching the stress levels of food allergic children. The study did identify a subset of children who had increased distress scores. The children with mothers who had high levels of anxiety, also had high levels of anxiety as well as a more negative attitude about food allergies in general.
I do not want my daughter to inherit my fears. I will not psychologically handicap my child. She already has enough to deal with. There are tons of situations that still make me nervous. I would love to ban her from any event that involves food, but that’s not going to help her in the long run. She is going to have food allergies the rest of her life. I don’t want her to live a life of fear. She needs to learn how to live a happy, productive life in spite of her limitations. She has to learn how to cope with the emotional aspect of food allergies. While pushing it all away as long as I can feels like the right thing, I have to ask myself, what is best for her in the long run? Will demanding bans or instilling a fear of her allergens help her learn to navigate her environment? No. Is there a possibility it could influence her toward becoming an entitled and demanding adult? That is a concern.

I would rather she live her life fully, despite her allergies. I want her to realize that not everyone knows about food allergies. People don’t leave her out to be mean, but simply due to a lack of understanding. Even if they do leave her out on purpose, I want her to gain strength from the experience. Everyone is bullied sometimes, everyone feels different, and sometimes people get left out.  I would love to protect her from those things, but they happen to everyone, regardless of allergies.  I want her to realize that everyone deals with something. I want her to be empathetic. Mostly, I want her to really live.

Thursday, February 20, 2014

Why Do Your Kid's Allergies Mean My Kid Can't Have a Birthday?

If you have been on many FB pages today, you may have seen this article Why Do Your Kid's Allergies Mean My Kid Can't Have a Birthday?   If you haven't had a chance yet, I would encourage you to give it a read.  This was a very thought provoking article for me.  The author has an egg allergy. She knows what it is like to be left out. She understands the potentially life threatening reactions that can happen and, honestly, I agree with some of what she says.

I agree that asking other parents to bring in commercially packaged foods that are "safe" for our kids is not appropriate. I sincerely doubt a parent without an allergy education actually understands if the food they brought is safe or not.  Do you think Tommy's mom called to check on cross contamination?  Most of us (definitely me) knew nothing about food allergies, label reading, or safety protocols until we were thrown into the allergy lifestyle.  It's insane to expect another parent, who hasn't had to deal with allergies, to know what is acceptable.

Now, she loses me a bit in the next couple paragraphs.  They have to buy store bought food due to food allergies?  I think it's a bit more about food safety.  Let's face the hard truth here, some people's houses and hygiene are substandard. The schools, and me too, don't want kids eating potentially contaminated foods. Nothing like having 25 third graders with food poisoning.

Then she goes on to talk about how she doesn't want her kids eating junk foods with long lists of  ingredients.  If you truly want your child to have a healthy diet, then why are you ok with them having 25+ sweets during school hours. With all the parties that happen, in addition to birthdays, there is junk food in the classroom on a weekly basis.  Also, how come the mom who could only bring fruit snacks and juice because of allergies couldn't opt for fresh fruit?  It certainly would have had less ingredients.

Next, the author moves on to something that has caused a bit of a divide in the allergy community and beyond. It's the idea of banning certain foods because of allergies. The author discloses that she has an egg allergy.  My daughter is also allergic to eggs, as well as dairy and nuts.  With nut allergies, bans are commonplace.  It seems like if the school or parents ask for no nuts, they just get it. Yeah, the nut kid goes to school and the parents feel pretty secure and the nut allergic child feels safe. This is another moment that we have to be real. I have two big problems with food bans.  1) Schools can't really enforce them properly. Kids, and even parents, bring the nuts anyway. 2) Why get your child used to the idea that their safety is only guaranteed by exiling the nuts.  Some day they will go to middle school and exceptions will no longer be made.

Then there are other foods, like egg, soy, and dairy, that are staples in every meal.  They will never be banned and you can't avoid them.  Children with certain food allergies grow up knowing the food around them isn't safe and that everyone else will be eating it around them. They are thrown into all of this head first and have to learn as they go, sometimes from experience. My daughter has become a master at avoiding kisses from people after getting tired of all the contact reactions. The sense of security she gets is from knowing how to avoid the foods and contacts, and how to treat herself (or get help) if an incident occurs.  There is not much you can do as a parent but teach them advocacy, avoidance, and treatment for the symptoms that happen occasionally, and keep an open dialog about their feelings of being left out or feeling different.

I have an interesting perspective on food allergies right now. My friend Natalie, of behind the reaction has food allergies. My daughter isn't at the age where she can clearly tell me what she's experiencing, or how her food allergies affect her personally. I get to see it through Natalie. She is an incredibly outgoing, motivated, and caring person who has never let her food allergies slow her down.  It's just something she has to deal with. What someone else is eating isn't going to change her plans. She goes out to eat, hangs with her friends, and is working towards a medical degree. Some days are hard for her still. Some days she's a hot mess, but don't we all have days like that? The point is, she is living her life, fully, with food allergies. She is a shining example of what our "allergy kids" can become. 

At what point do we as parents, and schools, stop sheltering our kids with food bans? While I totally agree with the author that bans may be necessary in younger grades, for certain students, at some point we also have to teach our kids to live their lives around their allergies.  How to avoid the foods on their own, and just as important, how to deal with the emotional aspects of food allergies. Yep, sometimes they get left out of the cake, but everyone has something to deal with. Lets not forget the kid in the wheelchair who doesn't get to play soccer or the blind child, deaf child, dyslexic child. They are all dealing with the emotional aspects of their disabilities as well. Let us not forget the children who are dealing with poverty, domestic violence, and hunger.  I think it's important that our children realize that there is no such thing as different. We all have to adapt a bit to be the person who society wants us to be.

I feel it's important to teach my child as much about her allergies and needs as early as possible. Then she will have all these years at home with me to master it.  It's going to be with her the rest of her life so she needs to learn how to advocate for herself. I'll always be here to help her work through her feelings, and guide her in avoidance techniques.  There's no doubt that she will come home, more than once, in tears because she feels left out or was teased about her allergies. I would rather she take the bad experiences and remembers those feelings. My hope is that she will take the empathy she has gained from her hard times, and use it comfort others who are having trouble coping with their own issues.