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When Peanuts are Poison: How to Get Control of Your Child's Peanut Allergy & Get on with Your Peanut-Free Life

6/19/2012

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Stephanie Gatewood lives just outside of Richmond, VA with her husband and two children. She works part time as the co-owner of a small company that designs commercial and institutional kitchens in hospitals, schools, and business foodservice areas.  Her son Alex is five years old and is allergic to peanuts and tree nuts. Her daughter Claire is three years old and has also been diagnosed with a peanut and tree nut allergy.  Claire has never been exposed to peanuts and tree nuts, so the family plans on looking into further testing for her.

Stephanie found out about Alex's peanut allergy the hard way, after having an anaphylaxis reaction at the very young age of two.  Alex just wanted to try his mommy's peanut butter and jelly sandwich.  He took his first two bites and  didn't want anymore. A few minutes later, he complained that his tongue was hurting.  Stephanie looked at Alex's tongue and was horrified to discover that it was swollen. Stephanie said, "I knew at that moment that our lives would be forever changed, and I was scared."  Stephanie called her husband in to take a look and they both saw his lips swelling. Scared and not knowing what to do, Stephanie contacted her Pediatrician after hour's line.  The on-call nurse that was helping them was very unknowledgeable and simply advised them to take Alex to the pharmacy to get Benadryl.  Having never been previously exposed to peanut allergies, they followed the nurse's instructions. Unfortunately, the Benadryl was not effective Alex's reaction continued to get worse.  An hour later, Stephanie tried feeding Alex some food, but he just vomited after only a few bites.  Stephanie and her husband continued to closely watch their son and then right before bedtime, they discovered that Alex had hives from head to toe.  They called the nurse back and she told Stephanie and her husband to take Alex to the hospital.  They were never told to call 911, which is the best thing to do when an anaphylaxis reaction occurs.  Alex was treated with steroids, Benadryl and breathing treatments.  The ER kept him for observation and then sent him home that night once they felt he was ok.  He was back to his normal self the next day.  

Upon discharge from the ER, Alex's parents were told to take him to the pediatrician the next morning.  Alex's dad came home from this appointment with nothing more than a prescription for an EpiPen Jr.  They had no trainers or instructions available. A few weeks later, they took Alex to an allergist and confirmedd he was allergic to peanuts and some tree nuts.  Stephanie said, "We got our questions answered and received reassurance that managing a life-threatening peanut allergy, though requiring processes and diligence, is doable."  

Stephanie and her family had an angel watching over them that day.  There were so many missed steps and all because of lack of awareness and education.  Things have greatly changed in the Gatewood household.  They are now armed with all the knowledge that they can get and continue to learn more.  But most importantly, they are armed with an Epipen and they know what needs to be done at the first signs of anaphylaxis.  

The day her son took his first and last bites of peanut butter, was also the last day for Stephanie and her family to have peanut butter in their house  Stephanie said, "Because we didn’t have extensive or severe food allergies in the family, we had no reason to believe our children would have any food allergies.  At the time, I didn’t realize that a family history of hay fever coupled with a child’s history of eczema increased the risk of food allergies. Our pediatrician never told us Alex was at risk for food allergies because of his history of eczema or my environmental allergies. So I was not at all cautious about introducing new foods. I was completely clueless about food allergies until Alex’s reaction."  Stephanie also said, "Even with
total avoidance, the odds are stacked against him for outgrowing it, especially given the severity of his reaction on first exposure, but we can hope." 

I have never met Stephanie in person, but feel like I have gotten to know her well.  She has been a very active and knowledgeable person on our Face Book Community Page and she is also the Group Leader of No Nuts Moms Group of Richmond, VA.  The group started in March 2012 and they currently have 12 members and are still growing.  In addition to her being an active member of No Nuts Moms Group, she also has her own Face Book community page, a blog called Peanut Free Parenting, and she has just finished a book called When Peanuts are Poison.  The book is meant to be a helpful guide for those newly diagnosed with a peanut allergy.  I think this is a great resource for all.  Actually, I feel like it should be a must for all peanut and nut allergic patients to read.  Whether you are newly diagnosed or have been living with this allergy for years, there is always more to learn.  When Peanuts are Poison is available in three different formats.

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Stephanie has learned so much about food allergies and this is why she has felt compelled to write When Peanuts are Poison.
Stephanie said, "I felt so lost and overwhelmed and scared after Alex’s reaction. I want to help other moms to get over those horrible feelings. And I think information and experience are the best way. And I can at least give information."  Stephanie believes that one of the biggest challenges parents of food allergic children face is successfully educating other people who have a direct effect on our children in regard to their allergies and getting those people to comply with our rules.  Stephanie said, "I think we often do a poor job of educating or making requests of others because we let our emotions get in the way. We are, understandably, so emotional that we forget to show others empathy."   You can read more on this in her book.

Stephanie wants to continue to support the food allergy community in any way that she can.  Her biggest hope is that one day there is a cure and all the work she has done and knowledge she has gained about food allergies will become obsolete. 

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Local mom spreads nut allergy awareness

6/13/2012

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This is the article that was done by our local paper.
 
By Mary Beth Almond
C & G Staff Writer

Four-year-old Evan Rutter of Rochester is never too far from his own personal
superhero. While it might not be able to fly like Superman, or climb walls like
Spiderman, his EpiPen does exactly what his idols do — it saves lives.


An EpiPen is a device that injects epinephrine into the thigh of someone having a severe anaphylactic allergic reaction and can buy critical time to get a patient to the hospital for further treatment.

Evan Rutter’s mom, Lisa Rutter, said she’s lucky her oldest son — who has a life-threatening food allergy — has never had to use his, but she takes comfort in knowing it’s there in case of an emergency.

Unlike his younger brother, Hayden, who has no food allergies, if Evan has a peanut or tree nut, he risks going into anaphylaxis — a life-threatening allergic reaction that can cause breathing problems, loss of consciousness and even death within minutes after contact with an allergen, according to the Asthma and Allergy Foundation of America.

“We’ve been lucky because we haven’t had to use the EpiPen,” Lisa Rutter said.  “But there were times — now looking back at some of the stuff that I did — (when we probably could have used it). Now that I know what I know, never ever would I do some of the things that I did.”

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The first signs
Evan Rutter was 3 when he was diagnosed
with a life-threatening peanut and tree nut allergy, but he showed signs much earlier, according to his mom.

“We had suspected it for awhile, although we were in denial of the whole thing  because we didn’t have any food allergies in our family,” Lisa Rutter said. “We always ate peanut butter and nuts in our house, all the time. When he did have little reactions, it was kind of dismissed by our pediatrician, so we never really looked at it seriously.”

Looking back, she distinctly remembers her son’s first allergic reaction — although she admits she had no idea what was happening at the time.

It was just like any other weekend. Lisa Rutter and her husband, Doug, were at home in their kitchen when they decided to give then 1-year-old Evan a small lick of ice cream.

“It was peanut butter ice cream, and I didn’t think anything of it because it just wasn’t on my radar, so we gave him a lick of ice cream and he got a rash all around his mouth. I still didn’t put two and two together. I thought ‘What the heck, why did he get a rash around his mouth?’ And then I looked at the ice cream box and I remember saying to my husband, ‘Oh my gosh, this has peanut butter, what if he is allergic to peanut butter? I know this is not good,’” she  said.

At his next doctor appointment, Lisa, mentioned the reaction to their  pediatrician, who advised her to simply avoid giving her son peanut butter until he was 3 or 4. Following doctor’s orders, she and her husband continued to eat foods containing peanuts and peanut butter, but made sure not offer those items Evan — which they soon learned wasn’t enough to keep him symptom free.

In the months and years ahead, Evan’s eyes would swell up every so often, and he would suddenly throw up, but his parents had no idea why. Lisa now believes the symptoms were allergic reactions likely triggered by peanut residue on her hands after eating peanut products, or from cross-contamination — which occurs when a food that does not contain any allergens is tainted with an allergen during food preparation, cooking, storage or serving — like when they would give their son Gummi Bears from a self-serve kiosk at a candy store using the same scoop that was likely also used to dispense nut-related products from a different container.

It wasn’t until Lisa’s father gave her oldest son a peanut butter cookie while shopping at the grocery store that she finally realized.

“As soon as Evan took a bite from it he was like, “Eww, Mommy. Gross.’ He didn’t like it at all,” she said. “At the time, I didn’t know if he was allergic, but we were still avoiding it … so I took it back to the counter and got him a regular cookie, but within seconds his whole demeanor had changed. I was getting aggravated with him because I didn’t realize what it was. He was so cranky, so I had to take him into the bathroom and he then he just threw up everywhere. So
now I believed it was the cookie,” she said.

Diagnosis and changes
After moving back to Michigan from Illinois, where her two sons were born, the Rutters found a new pediatrician, who suggested that Evan get an allergy test. Sure enough, at the age of 3, he tested positive for a life-threatening peanut and tree nut allergy — a diagnosis that would change their lives forever.

“When we got home we got rid of everything in the house — we have no peanut butter, nothing — because my doctor said, point blank, ‘he could die from this You need to get rid of all of that stuff from out of your house.’ So we got rid of it, and I haven’t had peanut butter since he has been diagnosed,” Lisa Rutter said. “After that, we didn’t have any more incidents at all. It was amazing.”

Lisa admits she was clueless about food allergies and had no idea what an EpiPen was when she first learned of her son’s food allergy.

“I knew having a peanut and a nut allergy was bad, but I didn’t know anything about it,” she said.

But her ignorance didn’t last long.

Allergy advocacy
Soon after visiting the allergist, Lisa began searching for food allergy support groups in the area and discovered Food Allergic Children Education and Support of Michigan, of which she is now the co-leader. Founded in 2004 by a group of moms with food-allergic children, FACES
of Michigan is a volunteer support group that serves the northeast suburbs of Detroit and is based in Macomb County.

After becoming involved with the group, she began searching for playgroups dedicated specifically for children with nut allergies, but came up short. In April of 2011, she decided to start her own group — which is now called the No Nuts Moms Group of Michigan — for children of all ages with food allergies and their parents. The group organizes play dates, public outings and moms’ nights out, in addition to serving as a support group and forum to spread allergy awareness.

Although the group got off to a slow start with just two members, it quickly grew following the launch of its Facebook page, and now includes more than 80 members across the state.

“It has just been amazing. People started saying, ‘I wish I had a playgroup’ and ‘I wish these were around earlier. My kid is 9 years old and they never had anyone to connect with. We wish we had this then, so they didn’t feel so alone.’ So I said why not? Why can’t you do it? And that’s when I started helping them set up their own playgroups in other states, which was not my intention, but I love it now,” Lisa said.

Just one year after she founded the No Nuts Moms Group of Michigan, she has helped form 16 other No Nuts Moms Groups in Ohio, Virginia, West Virginia, California, New York, Oregon, Colorado, New Jersey and Pennsylvania.

“It’s crazy how everything happened. I’ve made some lifelong friends through this, so even if it didn’t work out — I don’t think it will stop, but even if it came to an end — I would be thankful for the friends that I’ve made this far. It’s just been great. … I know so much (more) about peanut allergies now than I ever knew a year ago,” Lisa said.

One of those friends is Stephanie Barbaro of Clinton Township, who joined the No Nuts Moms Group of Michigan over Christmas break last year. Her youngest child, 3-year-old Mikey, was diagnosed with life-threatening allergies to peanuts, tree nuts, eggs and sunflower seeds after reacting to a small lick of frozen custard.

“I thought food allergies happened to other people,” Stephanie said. “I know it sounds dumb, but I never knew anyone who had one, and didn’t know what a reaction would look like. I didn’t know what was happening. I was terrified.”

Upon returning home from the allergist the day the diagnosis was confirmed, Stephanie remembers sobbing in husband Michael’s arms.

“It was pretty emotional, you know, to know that there is food out there that could kill our child. I did not know that this could happen to me,” she said.

Terrified of what could happen to her son, Stephanie said she and Mikey basically “lived in a bubble” at home for the next year, while her husband worked and their oldest daughter, 9-year-old Taylor, went to school.

The next day, she joined The Food Allergy & Anaphylaxis Network, which led her to the No Nuts Moms Group of Michigan — a move she says changed her life.

“I met Lisa, and we had a nice play date. Her little boy came up to my little boy and he said ‘Hi Mikey’ and he showed him his medical alert necklace and he said ‘Look Mikey, I can’t have peanuts like you,’ and it made me feel warm because it made me feel like we’re not alone. … I felt, for once, he can play with other kids without me worrying about what they’re eating and worrying that food is going to get brought up and I’m going to go in my snail shell. It was the first time that I really felt, you know, that we can be normal. We can do this. And ever since then, it’s just been awesome.”

For more information about the No Nuts Moms Groups or to join, visit http://nonutsmomsgroup.
weebly.com. Lisa Rutter and others from the No Nuts Moms Group of Michigan will be featured on ABC “Nightline” at 11:35 p.m. (date unknown)

Link to the Rochester Post Article

You can reach C & G Staff Writer Mary Beth Almond at malmond@candgnews.com




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Don't Let Food Allergies Define You

6/7/2012

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At the recent FACES of Michigan meeting, we discussed how food allergies shouldn't define your child as a person.  I couldn't have agreed more. 

It isn't good to let food allergies be your child's only identity.  Your child has so many other qualities.  For example, when others introduce your child, it may go something like this.  "This is Amy, she is seven, she loves eating pizza, her favorite color is pink and she enjoys jumping rope." "This is Tommy.  He is our food allergy boy.  He is allergic to peanuts, tree nuts, milk and eggs, poor kid."

I am very proud to be a food allergy parent and a member of this wonderful food allergy community, but I don't want others to always refer to my son as the food allergy child.  I want people to know that he is a bright four year old, who likes superheroes, playing with his friends, ice cream and his favorite color is yellow.  Of course it is very important to let others know about his allergies, but that shouldn't be the only thing that stands out when others meet us.  It is a hard balance and I still don't have all of the answers as to what is the right or wrong way to educate my family and others.  I am learning as I go and I try to do my best every day.

I try to teach my son without scaring him.  I also try to not always talk about it in front of him.  Kids need to just be kids, and have lots of fun. 

We all just need to remember to be vigilant and prepared.  We try to make the right decisions and hopefully pass these tools onto our children.

"The central struggle of parenthood is to let our hopes for our children outweigh our fears." 

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Emotionally Paralyzed

6/2/2012

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Sometimes in life we have people who really love us, but may not be good for us.  It is so hard to cut these ties, but it may be necessary.  I think some people are just unhappy with their own lives and do or say things that come across mean and hateful.  We try to get through to them, but it isn't always received the way that we would like it to be.  We can't make everyone understand or fix everything, but we try to do our best.  

When you start to feel emotionally frozen or out of gas, you need to move on.  Until these people in your life are ready to listen and open their hearts and minds, you must let go.  It isn't healthy for you or your family.  I guess this is why I love life quotes.  They are more than words; they are reminders of how precious life truly is.  

Yes, I am sharing this because of a recent encounter that I had.  The details I would rather keep private.  I am not a huge blogger and lately I feel as if I have had a bit of writers block.  I usually only write a blog if it really inspires me and means a whole lot to me.  I felt very sad and drained by a recent conversation I had with someone and I guess this has inspired me to write this blog.  

I think it is very important for all of us to surround ourselves with people who only want to uplift us and not cut us down.  We are all special and great moms.  No matter what someone says or does, always remember this.  

We can't pretend the world is rosy and full of rainbows all of the time, but it helps to keep a positive attitude and have people in your life that only want to love and support you.    

"You, yourself, as much as anybody in the entire universe, deserve your love and affection." 
   
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    Lisa Rutter
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