My name is Olivia Gray and I’m here to tell you about the Top 8 Challenge and why I invite you to take it with me. The” Top 8 Challenge” means to exclude the top eight common allergenic foods for the day or one meal. This means no milk, eggs, wheat, fish, peanuts, tree nuts, soy or shellfish. I’ll be taking it for the whole day on 8/8 but my 13-year-old sister, Bella, has to take it every day of her life.
Why you ask?
Bella has a rare disorder called eosinophilic esophagitis (EoE), which is an inflammatory condition of the esophagus. In Bella’s case, it means she is allergic to most foods and has been her whole life. I want to tell you a little about what it has been like for me having a sister with this disorder. My favourite weekend activity used to be going fishing with my Dad and my favourite dinner was battered fish. Not many 5-year-olds could have witnessed the consequence of just eating your favourite meal. My only memories are of the sound of the ambulance siren racing around the corner and my sister lying on the couch with puffed up cheeks. It’s hard to realise she could have died that night. It’s not the only time it happened either.
When I was a one-year-old, I went on a trip in the ambulance van with Bella because she was having an anaphylactic reaction to egg. I don’t remember that night, but I know we stopped having eggs in the house after that day. It was several years later until I got to try eating an egg. I do not like the taste of egg at all, in fact just the thought of what it could do to my sister makes me cringe.
EoE is a very complicated disorder. I don’t really understand it. I know it’s not the same as the anaphylaxis allergies Bella has and I know it is a type of eosinophilic gastrointestinal disorder (EGID), and that’s even harder to explain to you. What I do know about it is it makes her sick a lot. She has to go to doctor and hospital appointments and has medications every day. I remember when she was 7 years old she had a feeding tube put in her stomach. For four years she was pumped a special elemental formula into her stomach while she slept at night. She had to have it at school lunch breaks too. I’m proud of how well she handled having that feeding tube, I don’t think I would have coped with that. I’m happy to say the time came last year when she was able to have her feeding tube removed. She decided she would start drinking the formula instead. I’ve tasted it and it is not nice, again, I don’t know how Bella does it. She is an inspiration to me.
Bella has taught me a lot of things. She hates it when anyone says “I understand.” We have a lot of fights about that! No one can understand what it is like living with a disorder like this unless you have lived it yourself. That’s why my Mum, Sarah Gray, who started the charity, ausEE Inc., that supports those living with these disorders, came up with the Top 8 Challenge.
What better way to show someone what it is like living this day in and day out then having them experience it for themselves for a day?
I’ll be taking the challenge on 8/8, the day I’m reminded how challenging life is, and can be for all the people who have an eosinophilic disorder. That’s why I’m taking the Top 8 Challenge and that’s why you should too. The only way to destroy these disorders is to raise awareness and have more Australian research happen on it so they can find a cure. All of the money raised from the Top 8 Challenge goes to medical research to discover a cure and make the lives better for those like my sister who have an EGID. So please take the Top 8 Challenge on August 8th which is during National EOS Awareness Week 7-13 August 2016.
Go to the website today at www.top8challenge.com to join the challenge, donate and show your support for kids like Bella. For more information about eosinophilic disorders and ausEE Inc. please visit ausEE.
A version of this post appeared here in the Huffington Post
Food. It’s something we as a society enjoy. We center entire celebrations around it. Delicious delicacies dance on our taste buds as we laugh and dance with our friends. You’ll find it at important political deliberations, celebratory meals for our heroes and birthday parties around the world. Food surrounds us.
But what happens when those delicious delicacies wage war on our bodies instead? It begins an endless battle…
In 2008, we were blessed with a beautiful little girl who we named Abby. Her gorgeous blue eyes looked back into mine and I knew nothing would ever be the same. I would do anything for her. Little did I know how much she was worth fighting for. We brought her home from the hospital and three days later we would begin a journey we have yet to come back from.
There were signs in the beginning. She seemed uncomfortable breastfeeding. To my dismay, she wouldn’t take to it, so we began using infant formula. It didn’t help. She cried consistently as if she was in pain. She was profusely vomiting. Not being one to wait, I immediately took her to see her pediatrician.
The physician we had at the time rolled her eyes at me. I was a first-time mom. “Babies spit up. It’s what they do.” Well spit up maybe one thing, but projectile vomiting is an entirely different beast. We went back to that physician two more times. Each time I was brushed off or ignored. I was adamant on being heard. I knew something was wrong and no one could tell me otherwise.
Twelve pediatricians later, I found a doctor who actually listened to me. She wrote down my concerns and questions. Then she referred me to a gastroenterologist at a children’s hospital. It turns out I wasn’t just an over-protective, first-time mom. I was right. Something was wrong.
In October of 2010 my beautiful little girl was put under general anesthesia for her first of many endoscopies. After reviewing the biopsies, the doctors gave us her diagnosis: eosinophilic esophagitis (EoE). My husband and I were relieved to finally have a diagnosis. We went from relief to worry as our fingers swiped across tablets, phones and computers trying to find as much information as possible. We were on a roller coaster ride. If only we knew we were just about to reach the peak of the first drop.
The GI wanted us to immediately remove food from her diet and begin allergy testing. Abby has undergone every possible kind of food allergy testing there is. With the results not always being accurate, we were trying to find a needle in a haystack. She was also put on a steroid slurry mixture of budesonide and Splenda. After a year and a half, we switched children’s hospitals. We found one closer to home. Being closer to home meant less of a drive, and it also opened the doors for better treatment.
After our first visit we knew we had found the doctor for our daughter. He greeted her before us. He asked her questions and waited for her response, listening to every word. He asked her, “Abby, would you like to feel better? I can’t fix this, but I will try my hardest to keep you as healthy as possible. You’ll have to help me. OK? You tell me how you feel every time and I will keep it all in my notes.” He was true to his words. The first step of treatment was removing all of the top eight common allergies. An endoscopy would be scheduled to determine the severity of her EoE. This would be her seventh scope in just two years.
Unfortunately, the results of the biopsies were disheartening. She had failed to pass a clear scope with no counts of eosinophils in her esophagus. Her GI sat with us and went over all of our options. We could continue with the steroids, remove a few more foods and hope for the best, or we could eliminate all food from her diet. She would be strictly elemental formula which would be administered to her stomach via G-tube. At this point she was labeled with failure to thrive (FTT). I knew the steroids were only masking the cause, so we made the tough decision of going with a g-tube.
Abby was elemental for the first three months. She was healthy, thriving, happy and no longer felt the symptoms associated with her disease. My husband and I both agree, if we could go back in time we would choose for her to have a g-tube sooner. It was a game changer for her.
Slowly, we added foods back one at a time. Abby would have a scope after each food to see if there was any damage. For the first year and a half, we were able to add fruits and some vegetables back.
She has not added a new food in over a year.
Her health took a different turn in 2014. She became severely ill in just a matter of two days. I rushed her to the emergency room where she ended up being air lifted to the same children’s hospital where her GI was located. Abby had meningitis. Over the years, she has had several cases of pneumonia, strep and upper respiratory infections. During her stay in the pediatric intensive care unit, Abby was also diagnosed with immunodeficiency. Her immune system was almost nonexistent.
The immunodeficiency combined with her EoE was a new battle. Abby began to refuse food — including food we already knew was safe for her. After speaking with counselors at the children’s hospital, she began therapy for food aversion. It wasn’t the texture, taste, or look of food that kept her at bay. It was the fear. She was afraid of food. Abby knew what it felt like when her body rejected food and she no longer wanted to feel that way. I didn’t blame her. To be honest, I would probably feel the same way. The therapy was more of an outlet for her to express herself to someone other than a parent without judgement. It was the best decision we have ever made for her mental health.
Abby’s therapist has encouraged her to express her feelings whether in art, writing or even screaming into a pillow. I can’t imagine what it must feel like to be the only person you know with EoE and a g-tube. She has never met a child with EoE who has needed formula or a g-tube. I’m sure she must feel very alone in that sense.
One day I noticed she was intently watching her brother eat. She wasn’t upset by it, but more interested in what his food tasted like since she couldn’t have it.
He described it for her, and her eyes lit up.
She began watching cooking shows on television. Her number one love being “Master Chef Junior.” We watch episodes on repeat on our DVR. Her interest was in the judges. She loved to see how they commented on the different presentations, tastes and textures. Somewhere during those episodes, she fell in love with Gordon Ramsay.
She began cooking with me at home and her interest in food took off. She took notes when we ate. Everything was recorded. Sometimes we had to rank our meals from least favorite to favorite. Abby had an interest at home. She had a voice at home, but not in the outside world. She wouldn’t speak up for herself. Instead, she would deal with whatever the day dealt her, then she would come home and have a difficult time with the family. I advocate proudly for my daughter. Mother bear is definitely a title I wear proudly. I will “go to battle” for her in an instant, but when I noticed my voice was louder than hers, I knew we had a problem.
I spoke to her therapist, and we began encouraging Abby to speak up vocally. What we didn’t expect was her choice of actions.
She stayed in her room for two nights “writing stuff” to Gordon Ramsay and she asked us not to bother her.
On the third day, she brought a sheet of paper to my husband.
He read it over and told her it sounded wonderful. Abby wanted to mail her letter to him. I scoured the internet and could only find one address. I told her we would mail it, but I couldn’t promise he would get it. She then asked me to record her reading her letter so Gordon could hear it.
Abby is not camera shy. We have made videos before in efforts to raise awareness for EoE. To her this was no different. She sat down on a chair in her room and I recorded her reading the letter. It was the first time I had heard the letter. Only her dad had read it prior. I learned that day I was only an “OK cook.” We posted her video on Facebook and YouTube. Then we tweeted it to Gordon Ramsay. A friend of mine shared it again for me and the tweet took off. The next thing I knew, Gordon Ramsay was asking for me to contact him directly. I was screaming with excitement while Abby slept. When she woke up, the next morning we showed her Ramsay’s response. She was thrilled just to hear from him.
Abby was hoping for an email or possibly a letter with a recipe inside. What none of us expected was the hospitality of Gordon Ramsay and the Master Chef Junior staff. Abby was treated to a trip of a lifetime. We flew to LA to meet Gordon, watch a live recording and take a tour of the studio. But what made this trip the most memorable for her was the food. Ramsay and his staff took the time to learn what her safe foods were, how to read labels for allergens and what foods to avoid. They took the time to listen about her disease.
Then, they did something I have been trying to do for over eight years. Ramsay and his staff made her a delicious meal completely safe for her and she ate every. single. bite.
Gordon Ramsay personally served her and watched her take the first bite. The smile on his face was so genuine and sincere. He was just as excited as she was when she watched people eat. To our amazement, he had an apron made for Abby while she was there. She wears her master chef apron every day while she helps me cook in the kitchen. She still watches Master Chef on repeat. I don’t think her interest in food will ever change. Gordon Ramsay and his staff have cemented a love for food in her.
Even if she can’t enjoy it, she takes an interest in other people enjoying it. When she cooks her meals with me, she says it’s practice. Abby wants to open a “top eight allergen-free restaurant” when she’s older so people with food allergies won’t have to be scared anymore.
If you ask her why, she will tell you “No one will have to eat alone anymore. It won’t be scary. Everyone can be happy and safe.”
Her “war with food” isn’t over, but she is conquering it every day by not letting it control her decisions in life. She has her feet planted firmly in the ground and nothing is going to stop her. Abby is amazing. I’m so proud to be her mom.
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Our older son was diagnosed with eosinophilic esophagitis (EoE) in October 2015. With no warning we had to cut soy, wheat, milk, eggs, nuts and tree nuts, fish and shellfish from his diet. After six months of being seen by a gastroenterologist, a scope was finally done which led to his diagnosis.
EoE is one of many eosinophilic disorders that specifically targets the esophagus. Basically certain trigger foods cause a reaction that can become life-threatening. It appears differently in all patients, but usually involves gagging and vomiting, stomach pain, bowel issues and more. The diseases are generally managed by food avoidance, medicines and even feeding tubes if the patients lose too much weight. These diseases are very rare and often missed and not diagnosed until far too much time has passed.
Our son had massive gagging and vomiting beginning when he was a baby. He had bouts of eczema that put him in the ER; I was told I had to stop drinking milk while pumping for him. He had projectile vomit from formula when I finally gave up pumping after seven months. He had projectile vomit from eggs. He had colic, restlessness and was a fussy baby. I had concerns, but this was my first child. Our pediatrician (who is generally wonderful) brushed my concerns off as those of a new mother, possibly overestimating the amount or frequency of vomit. I became pregnant with our second son about seven months after the first was born, and we were just trying to get through the day.
Our son was nonverbal until he was past 3 years old. Again my concerns were brushed aside, and early intervention told me he would qualify for speech therapy, but all of “the rest” of what I was seeing must be in my head. After a long journey, he was diagnosed with autism,generalized anxiety disorder and sensory processing disorder, but that is a story for another time. After he turned 3 and started having bowel issues again, I was told it was behavioral and there wasn’t anything the pediatrician could do. I wouldn’t accept that, and we finally got a GI referral.
After months of trying various treatments, his gagging and vomiting was occurring more and more frequently. A scope and biopsy was ordered, and the rest was history. Eosinophil diseases are so rare and understudied that the only treatments are taking foods out and scoping over and over again to search for the trigger.
The diagnosis was just the beginning. We went four months with a stronger reflux medicine and the top eight allergens removed from his diet (soy, wheat, milk, eggs, fish and shellfish, nuts and tree nuts). During those four months, we had to deal with Halloween, Thanksgiving, family trips, Christmas, school parties and people who thought we were “helicopter food parents.” This adjustment was one of the hardest our family has had to make.
Imagine not being able to grab something at a restaurant or drive-thru, not even fruit or salad due to the risk of cross-contamination. Imagine a child who has to eat “special food” during snack time at school, and teachers who have 18 kids and no matter what they try to do, accidents happen. Within the first month our son had gotten the wrong food at school twice. If he had been anaphylactic the consequences could have been so much worse, but instead we had to start our elimination diet over. Twice.
At the end of February, somehow we had a clean scope! But that isn’t the end, or even close. Now we knew one or more of those eight foods was his trigger. Some unlucky families have to go far beyond the top eight to find their trigger. What’s next? Well, we start over a year of food trials. We have to re-introduce one food at a time, and scope between each trial, to see which one, or ones are the trigger foods. We have to monitor weight and height monthly because if weight starts to drop we have to first try a elemental formula that costs about $400 per month, or even go to a feeding tube. So far we have been lucky. This past month his weight dropped a little bit, but otherwise we are actually having weight gain. He is finally not throwing up, and this plain (expensive) food is making him feel so much better.
We hope to figure out which foods are the trigger within the next year. We were told to do allergy shots for his environmental allergies, and told that may help with the EoE as well. But no one knows for sure, and right now I think he has enough on his plate.
So why am I explaining this to you? I just want you to think twice before you roll your eyes at the mom who brings her child their own cupcake to the birthday party. Understand why someone is taking so long in the grocery isle, reading every single label they put into their cart. I want you to think about your judgment when you tell someone “just once won’t hurt.”
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Two months ago, we decided to have a feeding tube placed in our daughter so she could receive the elemental formula we desperately hoped would help her grow. She was small — 38 pounds at nearly 7 years old. Her growth curve started looking like the downward part of a roller coaster. More importantly, she was increasingly tired, easily fatigued and constantly felt ill. We were so blessed to have a teacher who let her lay her head down when she needed. After school she was exhausted, ready to come home and lay down, often crying with a horrible headache or doubled over with belly pain. For the past couple years this was the norm for her. She never really felt well and never really had energy. We had tried a couple little sports programs, but she never felt well enough to go, or if she did, she sat out most of the time. When she had pushed it a couple times, she ended up vomiting and dehydrated.
I have to admit that for a while I wasn’t sure she would ever really feel better. Sure, she had times and days that were better than others, but for the most part she just didn’t feel well. Making the decision to place a feeding tube was the hardest decision we have ever made. What if it didn’t work? What if she had some of the complications we knew could happen? What if next month she magically started growing and feeling better? What if, what if? Our doctors gently pushed us to go ahead and try. The surgeon smiled when he talked to her and told her she was going to feel so much better with the feeding tube.
We had the surgery. She woke up, looked at her little tummy and cried. It took everything I had to not break down. Instead, I smiled and reassured her it was going to be all right. And it was. It was one of the best decisions we ever made. Our little girl gained almost four pounds and grew a centimeter the first couple months.
The growth is wonderful, but the change in the way she feels is nothing short of amazing. She has energy and wants to read after school. She makes it through most days without doubling over in pain or enduring a horrible headache. She is happier, she smiles and laughs more, she makes jokes and she runs! She used to sit out in PE often, now she participates and even started a soccer class. While this picture may look like any other kid after a soccer class, to me it means so much more! Her little cheeks are pink (she worked hard!) and she is smiling! She ran her little heart out in the gym and seemed to have more fun than she knew was possible.
We were so lucky to know the owners where she went for her first class. They knew all about her and how hard it was for her to be active in the past. They encouraged her and supported her in her newfound love of action! They made it so much fun and were willing to meet her where she was at — ready but weary! The pink cheeks and big smile make all the worries we had worth it. The bottom line? The feeding tube with the elemental formula has completely changed her life.
Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.
The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease?If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
I have promised myself this is the year I will be thankful. Thankful for the little things. Thankful for the people in my life who have made a difference. Our daughter, the youngest of four, has eosinophilic esophagitis (EoE). Just because we have a diagnosis, that doesn’t mean we know everything about her disease or what her days will look like. I think often people assume that once someone has a diagnosis they have a manual of what to expect. Nobody does, not even the doctors, but over time you learn things about your child that no medical book can tell you. The unexpected happens and a disease can present many a curve ball. However, with six and a half years of experience, we have learned a lot about our daughter and her disease. We learn every day!
We took our family to Snowbird Ski Resort in Utah last February. The beginning of our trip was great and completely uneventful. Everyone enjoyed their first day of ski school. The night was quiet and everyone happily returned to ski school for their second day. At the end of the day, the ski instructor let us know our daughter didn’t seem to have as much energy and spent most of the day inside coloring or resting. Skiing and being at a higher altitude can be tiring, so we were not worried at all and took her back to our hotel to rest more. Not too long after she began vomiting. This happens with EoE, so we were still not overly concerned and tried to keep her hydrated. It was probably from something she ate. At that time we were still trying to figure out her triggers.
By morning the vomiting had become almost constant, so we took her to the clinic at Snowbird Center. Though no one was familiar with EoE, they took the time to listen to me and learn about the disease. They understood that as her mother I knew her best, and I knew she was going to become dehydrated and unlike a child without EoE, it would take longer and be harder for her to keep fluids down that were taken orally. It’s difficult to remember all the details of the conversations and events that happened but in the end, if it wasn’t for the clinic nurses and doctors’ willingness to listen to me and learn about EoE, I’m not sure what would have happened!
Initially we had planned on leaving the day after she became ill, but weather problems cancelled our flight and we could not get on another flight for four days! Flying standby was not an option as she was so weak we needed to help her recover before we attempted the long journey home. We were stuck.
Without hesitation the clinic doctor said they would help her, as long as it took. Each morning we would walk into the clinic and they would bring us to a clinic room, cover her with warm blankets, turn the lights down and give her IV fluids, and repeat the same thing every afternoon. Several times we tried oral liquids, and they just came right back up even anti-nausea medication. This continued for four days. Everyone in the clinic got to know us and helped us in more ways than I can even say!
I have thought of the kindness of the nurses and doctors at the Snowbird clinic every time I have become frustrated with the lack of understanding about EoE. The staff at the Snowbird clinic took the time to listen to me and hear me. They trusted my knowledge of my own child and what she needed and helped us through a difficult situation with unbelievable love and compassion. I will never forget them or all they did for us. I carried my daughter to and from the clinic for four days, and on our final day as we were leaving, she walked into the clinic on her own to say goodbye!
The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
To the People Who Say I Talk About My Illnesses Too Much
November 30, -0001
On a couple different occasions, people have told me I talk about my illnesses too much. But let’s step back for a moment.
When was the first time you heard about autism? How did you learn about peanut allergies? What about Crohn’s disease? Or cancer? Who told you about these things? If you say you read it on the Internet, someone had to talk about what was going on inside their body with a writer before you read about it.
These things need to be talked about. How many lives have been saved since people started talking about breast cancer? How many lives have been saved with earlier screenings? How many people are aware of meningitis symptoms and know when to get help? How do you know to go to the doctor when you have the flu? It’s because you knew what to watch for. Someone has to talk about these things for you to be aware of them.
Most people don’t normally know what gastroparesis is or know what it’s like having nine food allergies, let alone 40 food allergies. And the only way we can find a cure and get better is to talk about it.
I don’t talk about my illnesses because I’m bored and have nothing else going on. It’s because no matter what I do and no matter how I handle my life, my illnesses control parts of it. If I touched a walnut or wasn’t paying attention to what I was eating, I could hurt myself.
My illnesses don’t take breaks, my illnesses don’t take days off, my illnesses don’t get magically better with medicine.
Yes, I talk about my illnesses a lot. If I didn’t talk about it, you wouldn’t understand what I was going through. You wouldn’t know how easily a peanut, tree nuts or corn could hurt me. Talking about it could save me if I were ever in trouble.
If we don’t talk about it, nothing will change. We won’t get treatment. We won’t get a cure. We won’t get a better life because no one will do research about what’s going on inside our bodies.
We need people to help us create as much awareness as possible because we could save someone else from not knowing what is happening to them. People with chronic illnesses and rare diseases can go years in horrid pain without a diagnosis and without any help.
So thankfully, we have people who talk about rare diseases and chronic illnesses. Maybe one day when I tell people I have eosinophilic esophagitis (EoE), people will know what I’m talking about just like other well-known diseases.
A version of this post originally appeared on ShayWeasel.
The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you?If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.