By the time my son was properly diagnosed, he was extremely sick and we were relieved to find an elemental formula that could provide calories and nutrition he so desperately needed. However, we were stunned by the cost on top of already steep medical bills. The stress of feeding him was enormous.
Read moreEOSINOPHILIC DISORDERS
Eosinophilic esophagitis (EoE) is an inflammatory condition in which eosinophils (a certain type of white blood cell) infiltrate the esophageal wall. This typically occurs in response to foods or aeroallergens. Typical symptoms include difficulty swallowing, pain, nausea, regurgitation, and vomiting. Over time, the disease can cause the esophagus to narrow (a stricture), which can result in food impaction and require emergency removal.
Mayes, Age 4
Mayes was diagnosed with EoE and EC at the age of 15 months old, after a long and painful process of seeking a diagnosis. He was labeled as failure to thrive, experienced daily pain, and yet, lived each day with
Read moreArmando, Age 2
My son, Armando, struggled to grow and gain weight since birth. He would vomit daily and choke on foods once they were introduced. His first endoscopy was at one year old and confirmed an EoE diagnosis through biopsies. He relies
Read moreBryleigh, Age 11
My husband and I had to declare bankruptcy this past year because the medical bills and formula were so costly. Our former HMO did not cover her medically necessary formula at a cost to us of $1,500 per month just
Read moreRylan, Age 10
Being able to access medical formula is absolutely necessary for my family. My 10 year old son gets 1/3 of his nutrition from Neocate Splash at the moment. We originally tried the top six elimination diet but unfortunately my son’s
Read moreSawyer, Age 2
We spent a long time working with my son’s doctors to make insurance understand how much he needed hypoallergenic formula. He was officially diagnosed failure to thrive at 2 months. He was diagnosed with significant GERD at 4 months. He
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Sebastian, Age 25
Medicare always denying coverage, constant. Medicare is very poor. EOB’s need improvements. I have a son that needs medical nutrition and without it he would have passed away years ago. Medicare always denying coverage, constant. Medicare is very poor. EOB’s
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Elijah, Age 7
Insurance won’t cover my son’s formula unless he’s tube-fed.
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Tyler, Age 7
Tyler began getting sick at age 4 eating normal food. We went through three large healthcare institutions in NC where we live for help. After 1 year of illness, our second medical institution finally scoped the esophagus to find EoE.
Read moreEvan, Age 8
Our 8 yr old has been on EleCare/hypoallergenic formula since he was 9 months old. His first 3 years of life, he went from no safe other foods to 3 kinds of fruits and beets that he could eat. Slowly,
Read moreVikram Christian, MD
As a pediatric gastroenterologist, I take care of children with diseases of the digestive tract. Medical nutrition is often the treatment of choice for these conditions. Insurance denial is particularly frustrating in the case of a motivated child who intends to consume the prescribed nutrition by mouth but is told that he/she would require a feeding tube to have this therapy covered by insurance.
Read moreJeremiah, Age 7
Our family is currently affected by having to pay out-of-pocket for medically necessary formula (Elecare, Jr) for our now 7-year-old son. Jeremiah was diagnosed with Eosinophilic Esophagitis (EoE) back in June 2013. Prior to his diagnosis, he was very sick
Read moreLillian, Age 2
This is Lillian. She is almost 3 and still drinks formula because she has an eosinophilic disorder. Lillian has Eosinophilic Esophagitis. It’s a pretty rare autoimmune disorder that when she has certain foods, makes eosinophils (a type of white blood
Read moreMarcella, Age 15
Marcella was diagnosed with multiple food allergies in 2016. She is allergic to soy, peanuts, tree nuts,fish, shellfish, along with a slew of environmental allergies. We have lost count of how many times we have had to administer epinephrine, hospital
Read moreCody, Age 6
Coverage for medical nutrition is dictating our decisions on treatment. We cannot afford to pay for the formula so are delaying treatment because of the fact that it is not covered. I fully believe that insurance not paying for something
Read moreLiam, Age 5
Liam has struggled with GI issues, food avoidance, and maintaining growth since he was born, but the issues intensified once we tried to start introducing solid foods. His pediatrician told me time and time again that we just needed to
Read moreAvery, Age 3
Coverage would ease a huge financial burden for our family. Not only is the formula expensive, but so is the specialized diet Avery requires due to so many severe conditions. Due to the fact that Avery supplements diet with Elecare
Read moreWalker, Age 5
We have many bills due to traveling out of state to help our 5 year see doctors that specifically help his condition. By not paying $250 a month for the formula he drinks to get nutrients he needs to grow
Read moreDylan, Age 5
Told we were “too rich” to qualify for medical foods coverage but if we liquidated all our assets we could qualify for limited help.
Read moreApril, Age 17
My daughter has EoE allergies and IgE allergies and is already a tiny girl. At 17 yrs she only weighs 100lb. We are still trying to figure out all of her triggers, which is a long process. We have so
Read moreRemington, Age 18
Remington was diagnosed with eosinophilic esophagitis as a toddler. By the time he was 3 years of age, it became clear that food was worsening his condition. By taking so many foods out of his diet, he was at risk
Read moreCaleb, Age 13
Medically necessary formula has given Caleb back his health, allowed him to continue to advance in sports and school. Not knowing if our family will have enough resources financial to sustain his needs puts stress on all of us but
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