Our journey started with our child's diagnosis (dx) with EoE at 14 months after struggling with weight gain and vomiting since birth. This is all too familiar with parents of children classified as "failure to thrive". A first endoscopy was conducted to verify the EoE dx at 14 months. Typically, EoE is defined by > 15 eosinophils seen in the high-power microscopic field (HPF) in at least one biopsy sample.
Between 14 and 16 months many options were researched including Proton Pump Inhibitors (PPI's) and elemental formulas (elecare junior and neocate). We treated with a PPI from 15 to 17 months with a second endoscopy showing no improvement or worsened HPF. Our child continued to use nutramigen junior (which still has trace amounts of milk based proteins) from 14 months and continued through 21 months with a higher calorie mix for weight gain.
We most recently conducted a 4 month 5-food elimination diet (egg, dairy, shellfish, cashews and pork) plus nutramigen toddler to supplement. A biopsy was conducted at the end of November 2016 with great results. In most endoscopes the GI doctor conducts a biopsy on three sections of the esophagus - Upper (just below the throat), Mid and Lower (just above stomach). All three sections showed decreased numbers in HPF in upper (11, down from 50) and mid (32, down from 90) and lower staying the same at 15. The current phase is to use the very common treatment of a corticosteroid (Budesonide) applied topically with sticky food, like honey or peanut butter and have this work in tandem with the 5-food elimination diet and attempt to crossover to full elemental (elecare junior and neocate). We attempted Budesonide at 16 months with major behavioral problems in only a few days, but are attempting a compromised study for 4 weeks with the goal of EoE remission! This trial should end in January 2017 and we will continue to post updates on progress. The goal is that a full elemental plus 5-food elimination plus corticosteroid will lead to increased appetite and remission which would address both issues of weight and EoE.
Since the last appointment, we decided not to introduce Budensonide and continue with elimination diet only. Though our child has been full of energy, active, and in great spirits with a couple cheat days and one vomit through the holidays, sadly only gained a few ounces. GI doctor made a strong case for a feeding tube due to an increased drop in weight-height and head circumference measurements compared to average (American) size curves. We agreed and are waiting on a procedure date. There are some hesitations with the feeding tube because of the possible effects on behavior and activity but other parents with toddlers with tubes have been positive and reported great results. Looking forward to a safe and healthy new start in the next step. We also discussed non-traditional methods for increasing appetite, to include controversial CBD oils and homeopathic medicines but we are still researching other trials for toddlers. We will continue to update as things progress in the coming weeks. Prayers for a good transition with a feeding tube and growth!
As of February we are still using higher mix of nutramigen toddler, duocal in most meals and no feeding tube just yet. We are maintaining with the 5-food elimination diet and have visited with the GI regularly leading up to the nasal tube.
A nasogastric tube (NG tube) which is a narrow bore tube passed into the stomach via the nose was inserted mid-February. Since then we have had rapid weight growth. First visit after 7 days was 1 pound which took 7 months previous to gain. Now on week 3, weight progress went from 18.4 pounds to 20.7. It goes without saying the supplemental night feedings with the NG tube can work. The tube supplements with elecare infant. During the day the diet has stayed the same. 5-food elimination plus nutramigen toddler between meals. A dash of doucal has also been used in most meals like soups, broths or other dissolubles like oatmeal and cream-of-wheat. GI again recommended budensonide when there was a small EoE flare after a busy weekend. We decided one treatment at a time. The goal is to introduce budensonide after the tube trial is complete (2 months or 4 lbs) as to have reduced number of eosinophils before the next endoscope.
April 2017 - The NG tube has hit the 2 month point! Though short on the weight goal - 21.4, not quite the 22lbs, the visiting nurse and GI doctor are optimistic. The dietitian also increased nightly feedings to 540ml in 9 hour drips.
June 2017 - NG tube now going on almost 4 months! Weight has varied with seasonal allergies and couple of trips to ER to replace the tube but our fun dancer is doing great in gym and ballet. We have noticed that any type of congestion makes the tube almost impossible to stay in but staying positive and maintaining the double feedings at night. Drinking less and less nutramigen toddler by the week with normal meals taking place plus snacks. We have also learned that after a couple days without the tube (because of removal for cold or pulled late at night) does cause a dramatic drop in both appetite and weight in just a few short days. Still growing and learning and no signs of letting up on tube for the coming months because it definitely helps.
Keep the faith and we will keep everyone posted in the coming weeks!
November 2017 - Many updates since our last post. Since June our family has moved to a new home and area and as many EoE/EGID parents know that means new doctors, appointments and treatment plans. The doctors at MUSC Children's have been very knowledgeable and understanding of our childs EoE. Our child continues on with the NG-tube with some appointments showing up to the 10% weight line. The dietitian moved us from Elecare infant to Elecare Jr and we are also seeing a feeding therapist once a week to help grow from the food aversion. We started food therapy in our last home with some new tricks to take with us during meal time and we are using new techniques with the new therapist to help maintain a steady growth. Our current GI pediatrician prescribed a H2 blocker in preparation for the 4th scope in December. The "scope" (short for endoscopy) is to rebaseline treatment and path going forward. We are also scheduled to see an allergist and test again for any new or remissed triggers (food and environmental). Continue to pray with us until EoE is gone for good!
March 2018 - Through many ups and downs of the holiday season and a highest weight measurement to-date the decision was ultimately made to go with a gastronomy tube G-tube. The NG-tube was removed in January during a tough cough and cold and thought our child was eating much better with help from a feeding therapist (typically an occupational therapist/specialist) but was not gaining. Through normal meals all seemed well but was decided in collaboration with the GI/pediatrician/dietitian/allergist that the G-tube is the best way to gain ahead then support future treatment. Current treatment remains elimination diet - down to egg and dairy and a cautious approach to tree nuts and pork products (many are cured with milk). Keep up the questions, we are here to help!
May 2018 - Had the two month checkup and up 3 lbs since the G-tube. It's a great news but much more to go. Continuing with feeding therapy once a week and trying new foods every time - the games as a incentive really works and we have purchased similar toys or the same (like Mr Potato Head) for meals at home. We will keep you posted on growth. Been doing much more research via the "READ" group on facebook and we will be updating the research spreadsheet soon. Reach out anytime.
July 2018 - We had a four month checkup but this time no weight gain and seem to have plateaued again around 26lbs. With daily activities like dance, swim lessons and a new kitten lots of energy to burn so we are not distressed. We did bump up feedings, from our non routine dietician, to 600ml a night on Elecare Jr, since it's g-tube we use a variety of flavors. She won't take it orally. Also complete cut nutramigen since it's been finally reported by our GI clinic and EoE experts that it has trace amounts of milk proteins. It was great while it lasted for calories but does explain the night vomits since it was used for settling even at 3 years old. We transitioned to Flax milk diluted with water, Good Karma brand, unsweetened. We attempted to use the high protein half gallon but we think the pea protein may have caused a couple reactions so we used just use the normal half gallon. No pea allergy that we know of because eating peas has never been a problem but something to discuss in the next appointment. Feeding therapy continued weekly until end of June until our incredible therapist had to change locations and we are still waiting on the next assigned therapist and pray they are as excellent as the last one. Slowly adding more frequently found goods into our meal plans, like homemade pizza and hamburgers. We are very fortunate to have a Harris teeter and Publix that carry all the top 8 free brands. We will be adding more recipes soon and continue to recommend to sign up for the CHOC email distribution and READ Facebook group. More updates to come!
September 2018 - New look for the site! Please send us your feedback on the new look and functionality. We will be making huge changes soon on the treats, recipes and research pages. So much to add and we want to get the latest information out to you.
December 2018 - Big updates coming soon. Apologies for not updating the research list in over a year but we have been coordinating with Research for Eosinophilic and Associated Disorders (READ) to update our internal list but highly encourage our followers to check them out on social media. At home, our child continues on the g-tube supplement with slow gains (just passed the 27lb point) and we continue with elimination diet. Our last scope in mid-November had shown signs of improvement Hpf: High: 72 (from 100), Mid 20 (from 76) and low 12 (from 33)! However it appears the ige numbers are a bit higher and some trigger foods are showing elevated in blood. We will continue with modified elimination diet and g-tube with Elecare Jr. Cleared for nut trial so that will be big news to pass next month. Have a great holiday season with your family and email us for any holiday ideas or recipes.
January 2019 - Since the December allergy testing we got the go ahead for a Almond trial and two weeks ago passed! An incredible game changer which will mean more and new recipes. We apologize for not updating the research portion and recipes in over a year but time permitting we will make the updates this month. Also APFED has a new kit for families to adjust with a new way of life. More updates coming soon for 2019!
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