Did you hear that? That was the entire family shouting with joy. Why are we shouting? You will need to watch our latest vlog as we share big news in L’s eosinophilic esophagitis journey!
The day has come where many kids all across the country will visit their neighbors to say “trick-or-treat” and get a sweet treat in return. Kids will be jumping, skipping, running, and walking with no worries in the world to see how many treats will fill their bucket.
There will be also be kids that want to skip or run to their neighbor’s houses but are scared of not being able to get a treat. These kids have food allergies. They are not being picky or selfish, they are just wanting to feel “normal” and enjoy an activity like other kids. L falls into this category. Ever since she was diagnosed earlier this year with eosinophilic esophagitis, she has had a hard time going around other kids because she feels like she is not “normal.” We are working through this issue. A couple of months ago, we were in Michaels Craft Store and saw a teal pumpkin. As soon as we got home, we had to google about the teal pumpkin project. L explains this project in her short video.
Isn’t this a great idea? All because a fellow allergy mom wanted her kids to enjoy Halloween. The Teal Pumpkin Project was inspired by a local awareness activity run by the Food Allergy Community of East Tennessee (FACET) and launched as a national campaign by FARE in 2014.
We are hoping to find lots of teal pumpkins during our trick-or-treating outing. We wish you all a wonderful, happy, and safe Halloween!
To watch your daughter not able to eat.
To fail food trials, potatoes and apples.
To cry when being taken back for surgery for the 4th time in 2016.
To grab her throat in pain.
To have to drink a prescription formula to stay alive.
Friends and family, it has been a hard month. We serve a great Lord who gives us strength and encouragement every single day. When we started on this eosinophilic esophagitis journey, the family wasn’t sure what to expect. It has been heartbreak after heartbreak, but L has been so strong through the entire journey. I can’t even imagine what goes through her mind. When your daughter tells you she is not ready to go to heaven, you can imagine the tears that streamed down my face. It shows what the disease does to you mentally. It was my job as her mother to assure her that she has a great medical team and we are going to continue everyday to pray for a CURE! When a reaction happens to your throat, it becomes traumatic and forever stays in your mind.
L had to have an emergency scope this past week. Since we have been home, I have been trying to make her as calm as I can by filling our house with happiness and much prayer. This past weekend, we bought a himalayan salt lamp for her room, a kid’s calming stick, and more essential oils for her diffuser. Our hopes this will help with L cope through this very traumatic journey.
In a magical world, a wand would be waved and she would be healed. As a family, we feel she will be healed by our almighty Physician (Our Lord), so the Lord can use her amazing testimony of healing to share to others.
Next week, we meet with a new allergist to ensure we are covering all our bases with L’s regular food allergies and her EoE diagnosis. We will walk away from this appointment with a new game plan and get our L eating food once again. It is hard to remain positive and not throw your hands up and cry. But honestly, what would that fix? L feeds off of our emotions, so we must remain positive and fill our world with great happiness. This means family puzzle time, family craft time, animal discussions, car rides, and the list goes on.
We are not giving up. We are reaching farther. God is good!
As you all know, my youngest daughter was recently diagnosed with Eosinophilic Esophagitis. We have been hoping her motility would come back in her esophagus. The latter part of last week, we all wanted to jump for joy as she felt the motility was back! We figured out unfortunately, that she cannot have eggs. Her doctor was hoping she could do a top 4 allergy removal (dairy, soy, wheat, and tree nuts) and her known allergens (lemon, corn, and peanuts), but unfortunately she had a reaction to eggs this past weekend. It broke our hearts, so sad. We decided, we definitely needed to stick with the top 8 allergy removal (dairy, eggs, fish, shellfish, tree nuts, peanuts, wheat, and soy) along with lemon and corn.
After another trip to Earth Fare, I found a muffin mix by Enjoy Life Foods. As their website says, all Enjoy Life Foods products are free-from the eight most common food allergens in the United States, as declared by the FDA — wheat, dairy, peanuts, tree nuts, egg, soy, fish and shellfish. In addition, their products are made in an allergy-friendly facility, so there’s no chance of contamination. The foods also are free from Canada’s twelve priority food allergens, which include the top eight plus sulfites, crustaceans, sesame and mustard.
L decided she wanted pumpkin muffins. I came up with a recipe tonight and she really loves them. She has had three muffins this evening!
We will continue to do this food trial and see if she has any reactions. With EOE, it is a delayed reaction. Please let these muffins do well with her esophagus!
1 box of Enjoy Life Foods muffin mix
1 can of pumpkin puree
2 tbsp of ground cinnamon
1 tbsp of vanilla extract
Mix all ingredients. Do not over stir. Put paper liners in your muffin pan. Spoon muffin mix into the liners. Fill 3/4 full. Bake at 350 degrees for 12-14 minutes. Let cool for 5 minutes. You can refrigerate the muffins up to 5 days.
I know I haven’t written a lot of personal posts here at lately. There is a reason. Since January, my youngest daughter, L, has been on a health journey. It all started the second week of January when we were in the emergency room. She swallowed an M&M and it got stuck in her esophagus. This frightened L and thankfully we only live about 10 minutes from our local emergency room. With their quick thinking, we were able to get the M&M to go down but it opened up a can of worms so to speak. This was on a Thursday night and over the next few days, L kept complaining about food not being able to go down so she just quit eating. Milkshakes and liquids were her avenues of getting nutrients.
On Tuesday morning, I decided to call her allergist. They requested we bring her in right away. The allergist examined L and thought she had a stricture in her esophagus. This led us being sent directly to an ear, nose, and throat doctor. After he examined L, we were sent to the hospital for a barium swallow to check to see if there was a stricture. There was no stricture, but the radiologist showed me on the screen, her stomach was sending lots of acid back up her esophagus. We were sent back to the ear, nose, and throat doctor (ENT). He proceeded to put her on acid reflux medicine and scheduled a test called a manometry test to be done the next week. This test tells if your esophagus is able to move food to your stomach normally.
Fast forward to the next week, L’s symptoms were not being resolved and still unable to swallow food. She failed the manometry test, so the ENT scheduled an emergency surgery to have her esophagus dilated. She did well with the surgery and the pictures they were able to take were not pretty. He wanted her to stay on the acid reflux medicine and follow-up in two weeks. In the meantime, something just did not sit right with me. I felt like there was a bigger problem instead of acid reflux. I called her pediatrician and she was able to get us a fast referral to the closest Children’s Hospital.
The first appointment at Children’s Hospital was full of information and left us feeling like we were finally going to get a proper diagnosis. The pediatric GI put L on another medication and wanted her to be on it for four weeks before she did a full endoscopy and biopsies. Unfortunately, during this time L is still not able to eat which is just playing on all of our emotions. It is hard to see your daughter drop 16 pounds in less than two months. The doctor prescribed for L to be on NeoCate Splash. This is an amnio acid formula and is hypoallergenic.
It was time for the surgical procedure that would finally give us answers. The pediatric GI surgeon was so good with L and didn’t mind her million questions before she was put to sleep. After the surgery, the surgeon comes to talk to us and said without a doubt your daughter has eosinophilic esophagitis (EoE). This is a term that we were told was a possibility at our last appointment, but were praying and hoping this was not the case. We were just relieved and grateful to finally get a diagnosis for L.
What is EoE you may ask? This is a rare and chronic disorder. This is a type of white blood cell that builds up in the esophagus because the esophagus thinks food is a foreign particle. More than likely, L has had it for a few years as the doctor said it has damaged her esophagus greatly, where she has no motility. The signs were missed over the years and I do feel so bad for that. We are adding a steroid to hopefully help her regain the motility back. She was very swollen all the way up to her throat. They took 8 biopsies while they were in there as well so we will wait for those to come back. We are scheduled for a big meeting at Children’s the first week of April for a long term treatment plan. Currently, there is no cure for this disease. Although, Cincinnati Children’s Hospital has a division that is dedicated to finding a cure for EoE. For now, we will pray the steroid will at least bring back her motility in her esophagus and she will stay on the formula so she doesn’t drop any more weight.
We are grateful for Lyndsee’s surgeon/doctor. She stayed right there with us answering our questions. This will be a long journey to see what foods are causing EoE in L’s body. I will update her journey here so maybe in return it can help other families.