This is not a diagnosis for you. The “failure” is not meant for you, or your worth, or your mama skills or all you are trying to do for your baby. The “failure” is just for thriving. Just for eating. And you know what? After coming out of a warm, mama’s womb, being fed by a cord — eating isn’t easy.
And mama, that’s not you.
I know. I know you tried or are trying to nurse. I know you did or are pumping day and night. I know you are bottle feeding and/or tube feeding trying to get every calorie in that you possibly can. I know you are waking up all hours of the night. I know you are counting each and every ounce going into your baby. I know you are stressing about doctors appointments and weight checks and test results. I know.
I’ve been there mama.
But please, my dear mama, you are not a failure.
You are not a failure because your baby didn’t want to latch.
Living with chronic health issues and a rare disease means getting creative. I learned this when my son Joshua was diagnosed with eosinophilic esophagitis (EoE) at 18 months of age and we began our journey to find out what foods he would need to avoid as part of his prescribed dietary therapy.
I had to learn very quickly what – and how – to feed my child to help him feel better. He needed to avoid all the top eight allergens (soy, wheat, milk, eggs, fish and shellfish, nuts and tree nuts). Shopping and cooking became a whole new adventure. Not only did I become diligent about scouring ingredient labels to be sure it didn’t contain any of the many ingredients he had to avoid, but I also had to learn how to properly prepare and serve everything he ate to avoid possible cross-contact between food proteins.
I put a great deal of time and effort into cleaning and designating kitchen utensils, blenders, cookware and counters to prevent cross-contact. While this does require extra time for us, it’s simply what we must do to keep Joshua healthy.
Joshua’s EoE made it so he had a hard time swallowing solid foods. Once I figured out what he could eat, I began preparing pureed meal combinations in addition to some bite-size foods like handmade “sandwiches” with small slices of ham and rice crackers. His care providers at the local children’s hospital helped me to plan nutritionally-balanced meals for him, and he was prescribed a special amino acid-based formula to ensure he was getting all of nutrients he needed.
When he began school, I worked closely with the administrators so he could eat safely in that environment. They were incredibly supportive about his needs, which has been a blessing!
Disease management is a facet of Joshua’s daily routine in a society that is so food-driven. Holidays, celebrations, parties – they all seem to center around food! Working with several medical and nutritional specialists, we fashioned our new lifestyle around activities rather than mealtimes.
Joshua’s health needs means we must be prepared for anything, including frequent trips to the emergency department or hospitalizations. Since Joshua’s flare-ups significantly manifest as asthma and eczema, he has been hospitalized several times for a variety of chronic health concerns, including pneumonia. Managing care with chronic health issues requires appointment preparation and follow-up, document management, engagement with specialists, multiple telephone calls with providers and health insurance carriers and a host of other collaborations.
Joshua’s care requires special preparation for travel whenever we leave the house, regardless if it’s a long trip or just a short visit to the grocery store. We have a cooler in the car so that we keep his meals, snacks, medication and medical food chilled whenever we are away from home. Since his homemade pureed meals and snack options are not readily available at the local grocery store, I always keep a supply on hand. Play dates and going outdoors for an afternoon at the park requires preparation and planning. We keep a backpack handy with items such as a face mask, a portable nebulizer and other essential medication that might be needed in some environments.
Joshua’s care is time-consuming, but we have adapted so it has become second nature. It’s just part of our routine now!
This year, National Eosinophil Awareness Week will be celebrated May 14–20. I hope that by sharing our story, more people understand what it is like to live with EoE and why families like mine take the precautions we do. You can learn more about eosinophil-associated diseases, or find resources for patients, caregivers and healthcare providers, on the website for the American Partnership for Eosinophilic Disorders (APFED).
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“Mama, I think the new medicine is working. The pokeys in my esophagus and stomach are gone!” These are some of the most exciting words my 9-year-old son Davis has ever said to me. I had to swallow the lump in my own throat and fight back tears as I asked him if he was sure. He gave me a grin and told me he was very sure. Just as a million questions came flooding into my brain to ask him, he scampered off to pick back up the Playstation controller and continue playing his video game. He didn’t realize that was some of the best news I have ever heard in my entire life. I was stunned, and it took me a few minutes to process what he said before I went to discuss this revelation to my husband.
Davis has eosinophilic esophagitis (EoE), multiple anaphylactic food allergies, Ehlers-Danlos syndrome (EDS), dysautonomia, plus more diagnoses. His diagnoses seem to interplay in ways that even the doctors do not fully understand yet. We recently learned there is a subset of patients with both EoE and also connective tissue disorders (EDS is one of those) and the subset is labeled EoE-CTD.
We sometimes refer to Davis as “the needle in the haystack kid” because he is in a group of EoE patients who do not have any safe foods even after years of food trials and endoscopies. He doesn’t talk about it much, but if asked about his allergies, he will just tell you he is pretty much allergic to all foods. Then he usually shows his G-tube and talks about the special formula he gets through that (Neocate Jr.) Then he likes to say something about being lucky that yucky medicine can go in the tube and he doesn’t have to taste it.
Right now, the only real food Davis can eat is chicken, but it actually is causing problems inside him according to the last endoscopy he had. The only reason he is able to keep eating it is that he is trying a medication. He can also eat plain cane sugar, salt, ice/water, and certain flavors of one brand of cotton candy. Some other kids with EoE can have other artificially flavored things referred to in the EoE community as “freebies,” but Davis can’t because he has had allergic reactions to them.
Davis was diagnosed with reflux and also eczema in his first few weeks of life. He was diagnosed with his first known food allergy at 6 months. He received the diagnosis of EoE at 14 months old, and he was 3 when the geneticist told us he had EDS. All four of us in our family have health conditions, but he is the only one dealing with EoE and food allergies. He is a very matter-of-fact boy and has generally taken everything life has thrown at him in stride.
A layman’s explanation of EoE is that his body recognizes food as an enemy rather than as nourishment. The body then sends white blood cells called eosinophils to fight the enemy food in his esophagus where these cells wreak havoc and cause pain and more problems. Most EoE patients only have so many foods that the eosinophils are triggered by, and they can usually still eat the majority of foods. There is one type of medicine for it, swallowing steroids that are usually meant to be inhaled to regulate asthma.
Davis tried the medicine a couple of different times years ago and it didn’t work for him and also caused bad side effects. He has passed a couple of food trials, verified by endoscopy, only to have a later endoscopy on the same food turn up bad. He has had a frustrating time of it.
After the most recent endoscopy for chicken turned up bad, meaning the food is causing eosinophils to congregate in his esophagus causing problems, his gastroenterologist asked us what our thoughts were on revisiting the swallowed steroid medication that Davis had tried with no success before. As it had been years ago, we talked with Davis and decided we were willing for him to give it a try again. It was a tricky decision for Davis as he has the memory of an elephant and remembers the medicine tasting bad and he remembers the side effects. He gallantly did decide it was worth trying again if it meant he could continue to eat chicken while he was trialing the new medicine.
The trial got off to a rocky start as it took us a bit to get the ratio of medicine to the thickening agent we used correct so he couldn’t taste the medicine. It is not as simple as one might think – Davis has oral aversions and if something tastes bad to him, it triggers his gag reflex and you can imagine what happens after that. Thankfully we got it right after a bit and then it was smooth sailing. He’s been taking the new medicine for weeks now.
As it stands, Davis will have some chicken and sugar cubes or cotton candy for his Christmas meal, plus elemental formula going into his feeding tube. The chicken is not a safe food for him, but the new medicine may help his body tolerate it and possibly even more foods. We don’t know yet. He does have anaphylactic allergies as well, so at mealtimes we have to make sure we are celebrating with family and friends who understand to be careful about spilling and washing food residue off their hands and such as that. We are fortunate that everyone at our Christmas get-together understands and does their best to help us keep Davis safe.
Every party or holiday at least a few times I stifle the urge to cry. I am sad my son has no truly safe food, and it is hard to see other kids so excited about yummy holiday food and desserts and he just kind of watches them eat sometimes. He is genuinely interested in their food. I also cry because he meets every challenge head on and usually with a smile on his face. He does get sad sometimes, especially if we go somewhere where we don’t expect there to be food but then there it is. We do homeschool and his health had a lot to do with that decision. Of course I can’t control every environment, and life is full of surprises. I am just so proud that he is learning to speak up about his own health and happiness and to start advocating for himself.
I was still not expecting the happy announcement he made about “the pokeys” being gone. That is how he has always described the feeling of his EoE flaring. I pray it will correlate with good scope results in a January and that he might begin to build a diet of foods with the help of the medicine. My husband and I lie awake at night and talk about being able to cook and serve Davis a whole plate of different foods. That would be a prayer answered and a dream come true for us.
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I’ve been there. Looking around town, around the internet, wondering, what is the deal with those teal pumpkins? Why is this such a big deal, even with kiddos with allergies? Can’t they just have the safe candies? I may or may not have even gone to the point of wondering if maybe some were going a tad bit overboard.
Then came Halloween 2015. Last Halloween, my older son was diagnosed with eosinophilic esophagitis (EoE), in his costume and all, in a doctor’s office where they were handing out (non-safe) candy. We were told he had to immediately stop consuming milk, soy, eggs, wheat, fish/shellfish, and nuts/tree nuts. We had to immediately begin a probable two year process of food trials and any one (or more) of those things would be the most likely culprit. So on the day known for kiddos receiving chocolates and candies, my son suddenly couldn’t have almost any.
If you have never heard of EoE you are not alone. There isn’t really an easy way to describe it since it has a different impact on each person. A slightly more lengthy explanation can be found in a previous article of mine.
An extremely short summary: certain triggers (foods or environmental) 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.
I’ve learned a lot in the last year. I’ve learned about hidden ingredients, cross contamination, GI procedures like endoscopies and biopsies. I’ve learned how to help my son adjust to a life where he can’t just eat anything. He can’t have the same foods as his friends, and he has to have mom check everything he eats. He can no longer eat at restaurants until his food trials are complete since the risk of cross contamination or unlisted ingredients is too high. We’ve both learned that if he sneaks something, like his brother’s milk, the consequences are immediate and painful.
I’ve suddenly become one of the moms I wondered about and never truly understood. I was constantly visiting different stores for safe foods and checking every single label. I made safe alternatives for every birthday party, every time. The amazing thing is, for the majority of the time my son prefers the safe foods. He feels better and has only had GI issues this year when he had a food he shouldn’t have. Watching him make safe choices, which in reality are much healthier choices, is amazing and makes me so proud.
As I remember the fear we had before we set off trick-or-treating last year, you better believe I am all for a safe alternative for my son — a safe alternative for any kiddo with allergies, since as difficult as we may have it, the fear and precaution is nothing compared to a kiddo with an anaphalytic allergy. Last year trick-or-treating involved trying to guide him towards possibly safe choices, hiding and throwing away unsafe candies, and a sneaky method of somehow ending up with a basket of only safe alternatives. This year will probably be the same, but luckily we are down to avoiding only milk and wheat (while in a fish food trial). Luckily I am more prepared this time for what will come.
After last year, I thought about those teal pumpkins. I researched and found information here. I ordered our safe treats, which I will have in a separate bowl next to the candy. My son is so excited to give away bouncy balls, glow-in-the-dark critters and jumping frogs. We painted and created a wooden teal pumpkin that we can use every single year. We proudly display it in the front window, and come Halloween it will be out for all to see next to the non-food treats.
In what I feel is just as important as participating, I share the word, since so many are unaware of what these teal pumpkins mean and how awesome it can feel for a kid to be able to participate safely. Please consider making a teal pumpkin along with some safe alternatives, even if it’s just a few. Spread the word and help us make Halloween safer for everyone. #tealpumpkinproject
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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