Life Threatening Food Allergies and Painful Eczema – A Ten Year Journey That Continues

by Leila on December 1, 2012

You Don’t Expect This with your Infant

Food allergies are not unknown to me as I have battled my own minor allergies and watched my brother struggle with his allergies and eczema our entire childhood.

Does anyone ever expect their children to be unhealthy? I think we focus on what will they look like? Who will they take after? Will they have my big feet? Will they love me?

You don’t wonder… will my child be born with a life threatening condition like food allergies? Or will my child’s skin be so sensitive that they bleed, scar and spend days crying in pain?

We know about these things but we don’t really dwell on them. Or, we try not to.

At a month old my daughter broke out in hives and went into anaphylaxis shock from nursing. I was holding my infant and she turned all shades of colors, swelled up and broke out in hives.

I will never forget that terrifying moment.

Figuring Out How to Manage Allergies and Eczema isn’t Easy

I went on a food elimination diet to figure out what she was allergic to. It was over 20 things by the time she was a year old. There was no formula on the market that she wasn’t allergic to so I had to nurse (which was better for her anyway) and I had to be on her diet. Boy was I skinny!

She was so sensitive that if I cooked eggs in the house she would break out. If I touched cheese then touched her then she broke out in hives. If friends came over and sat down on our couch and she sat on it after them she would break out because of the different foods, outdoor allergens or pets they were exposed to. Dyes, caffeine and medicines caused adverse reactions.

It sounds crazy. I felt crazy. Each day presented a new challenge.

She had terrible eczema. The kind where her skin bled and she couldn’t stop scratching. She could only wear cotton. Do you know how hard that was? Organic was preferred but back then it was so expensive. I had to sew gloves and socks to her clothes so she couldn’t get to her skin and scratch them. No matter how hot it was she had to be completely covered. I barely slept when she was an infant and toddler because I would wake up trying to keep her from scratching. She has scars on her legs, feet and arms from her infant eczema. It’s fading over the years and looks like a faint discoloration in areas but it still breaks my heart to see remembering the pain she was constantly in.

Doctors only wanted to pump her full of medicine that would cause long term damage and one even told me that children with these extreme issues don’t often live full lives because there isn’t much that can be done. He said that kids who can’t experience a full life, who spend it isolated also develop depression. Everything out there in the world and everywhere we go is centered around food. It was impossible, he said.

I refused to accept that. I was told these things often. Medicate, give steroids and pump her full of medicine and deal with the long term side effects later.

I saw what traditional medicine did long term and I wanted a solution not a medicine to cover up symptoms. Not an isolated life. All of this just sounded like bullshit.

Not Accepting Limitations and Never Giving Up aka Why I Believe in Ninja Kicking

I wanted to figure out how to let her live a full life where her body could grow without an insane amount of medicines and her to be healthy one day.

I wasn’t told it was impossible just improbable. It was assumed to be too hard.

I studied. I became active on forums and I learned as much as I could. I charted everything she ate, her bowel movements and her sleeping patterns. I was able to determine a soy allergy based on the change in her bowel movements and sleeping patterns before her blood tests came back positive. I realized how much of what we consume directly influences our bodies, mind and temperament. I went through a lot of shit doctors and I, thankfully, found some amazing ones.

I had found an allergist who worked closely with a wellness nutritionist and homeopath. I went into that appointment when she was a toddler expecting to get a mountain of knowledge and direction. Instead, I was given confirmation that exactly what I had discovered on my own was what I needed to do.

Even the supposedly extreme measures that some people thought I was crazy over. Things like not allowing friends to bring food inside my home because my daughter could get sick from it. Or expecting friends to wash their hands when they came over. They thought I was being a bitch and it was all in my head. I don’t miss them.

I found solutions. When I took her to the park I wiped down the swings so there weren’t issues with allergens. I had a blanket that she would use on the slide. We never sat on benches but I always had a picnic blanket. When we went to an amusement park or museum then we avoided food places and I took extra precautions. I just made it work.

If others judge me for my choices all I can ever say is they have no idea what it’s like to be in my shoes. I don’t ever want anyone to pity my journey in motherhood just as I don’t want anyone to feel sorry for my daughter. We are better for it. We are stronger for it. I would not be the same person that I am had I not been down this road and she would not be the same amazing kid she has become. A kid who still has typical flaws like attitude, not cleaning her room and “forgetting” her homework.

Yes, it sucks that anyone has to endure some kind of pain and I would never wish this journey on anyone. I refused to allow it to be a crutch for us no matter how hard or isolating it was. I refused to allow her health hurdles to prevent her from having a life like any other kid. We have accomplished just that to the point where daily considerations over her health are as natural as breathing.

Allergies and Eczema Studies Are Finally Making Progress… And so are my daughter’s

When it comes to allergies and eczema we only have two solutions: Avoid and Suppress. Avoid all your allergens (which actually is easier than you may expect) and suppress the reactions. Those options kind of suck.

Sometimes the body “forgets” it is allergic to something. It is less reactive and on alert. This is part of the way a person will “grow out of” an allergy.

Now there is a new way. Oral Immunotherapy which is basically giving your child a small amount of the food they are allergic to and over time it builds up a tolerance. This study has been done over the years and researches have confirmed this year that egg is among the allergens that are successful in oral immunotherapy.

When eggs are cooked at a high temperature for at least 30 minutes the egg proteins break down so the body doesn’t recognize them as egg proteins.

Over the last few years my daughter’s egg allergy has gone from off the charts high to a category 3 and now a 2. This is amazing. It’s huge. I honestly never thought I would see a drop like this in an allergy that I couldn’t even keep in the house! I never thought we could eat so many different foods together. I didn’t expect her to have so many options. She went from over 20 allergies and slowly started to “grow out” of them over the years. Now she is down to around 5. It always changes and always will and we embrace that. And we enjoy the hell out of the progress!

As we figure out how to control her diet then her general health improves and especially her eczema. I don’t have to smother her in steroid creams. She can wear synthetic fibers in her clothing.

Food. Skin. Asthma. Temperament. My sanity. Food allergies. It’s all connected, but, not in a continuous cycle but more like a finely woven web that depends on each strand to stay strong.

Kid’s who were so allergic to peanuts that they couldn’t be in the same room as them have gone through oral immunotherapy successfully. As the studies continue there are huge improvements with food allergies from when my brother and I were growing up, til ten years ago when I watched my infant break out in hives and swelled up to now.

It makes me hopeful for the future for not only my daughter but all kids who deal with the pain, fear and difficulties both physically and emotionally from food allergies.

She may always have food allergies. She may one day have the freedom to live without fear. Either way we are going to make the most of it, enjoy each moment and be as silly as possible.

Related Posts:

Food Allergies and School Issues

Food Allergies and Girl Scout Cookies

When Your Child Tries to Push the Food Allergies and Limits

When people wish Harm on your child because of food allergies and because they are assholes

When Food Allergies Empower an Independent and Thoughtful Child

How to be cool about food allergies at Birthday Parties

And something really funny about PEANUT allergies <– this will make you laugh. Lots. Give it a read.

About Leila DontSpeakWhinese

Leila, aka The Ninja, is the advocate for all things not whining. Parenting is fun when everyone stops b*tching! She is the Mom of a big blended family of four awesome kids. They ninja kick through life together. Oh and she is a total jackass.

Comments

  1. KindredAdventur says:

    Huh…signed me in as Kindred… haven’t seen that in a looking time. It’s me LV. HOld on I have to wipe away the tears and think about where to even begin. I have followed your journey for sometime and yet I never knew its beginning. I have watched and listened and read d my life is fuller because of what I have learned from you. I know you are amazing … incredibly amazing, so freckin awesome. Yet reading this post it made me realize you are so much more then simply amazing. You are ground breaking, a idea changer and a fierce advocate. I first thought if you had had your daughter now how much your journey would be different and then I reflected and thought no it wouldn’t. Might the obstacles be speed bumps instead of mountains… yes. Might some allergic free resources be easier to find and more inexpensive… yes. Even with all the progress society and medicine has made it would still be quite a journey because some people just still do not understand. What a journey!!! What a very lucky girl Kim is. So amazing and inspiring the efforts, sacrifices and f*cking hard work you have put in to ensure that she has every possible opportunity to love the most fantastic life she wants to!!! XOXOXOXO

  2. rustilyn says:

    amazing. just absolutely amazing. so happy for your family!!

  3. [...] When my daughter was a month old I nursed her after eating eggs and she broke out in hives and went into anaphylactic shock. I knew she was probably allergic to eggs and maybe other things I ate that day. That moment changed me. I didn’t experience the physical reaction myself but it was a feeling that can’t be erased. That is where our journey from her egg allergy began. [...]

  4. haileyjane76 says:

    i don’t what the hell is going on with my daughter but I sure could use your help despite getting rid of crazy foods like banana broccoli asparagus strawberries gluten milk soy went to Bewellchiro.com who helped me thru the process got her on 8 supplements three of them for skin her skin got worse did take her to a derm so she would stop looking like a lizard and her skin cleared up on the most part stopped crying and slept better but still will have pain spells and i have to give her ibuprofin i felt the Lord has been telling me to get her on the body ecology diet that clears eczema got to get my mind right lots of chopping and cooking but if it will bring relief amen please email me hailstorm7676@gmail  right now shes sleeping with a crystal and snowflake rock that this healer said would help her we will get to the bottum of this and prayer is helping

  5. Christina R says:

    I’ve had eczema for over 10 years, and I just recently was able to cure it by eliminating certain foods that were causing me allergies :) Food intolerances are a difficult thing to manage, and kudos to you and your daughter for being able to tackle them!
    Christina R recently posted..Chocolate is Bad for Eczema: Truth or Medical Dogma?My Profile

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