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 moreImmunoglobulin E & non-Immunoglobulin E-mediated allergies to food proteins
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
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Armando, 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 moreBrooks, Age 9 monhts
My son was hospitalized at 7 weeks old due to a reaction. At the time it was determined the common cold sent him into near shock. He was also diagnosed with a cows milk protein and soy protein allergy, then
Read moreRonan, Age 2
My 2 year old son Ronan has FPIES. He was born healthy but quickly lost to much weight within 2 days after being born and was failure to thrive for the first month of his life. Once I realized at
Read moreIsaac (13) and Caleb (11)
Over the course of five years, our out-of-pocket expenses for medical nutrition for two children was approximately $85,000. Add to it the higher cost of specialty food that they had to eat because it was medically necessary due to ingredient
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
Read moreKatherine, Age 8
Katherine was only 2 months old when we knew something wasn’t right. It took us 8 more months to figure out what was going on. No baby formulas would work for her. Not regular formula, not soy formula, not even
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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
Read moreLucas, age 18 months
While we are fortunate that wic and insurance cover Lucas’s formula because of his medical necessity as well as my persistence with insurance and Drs filing out the right things, etc, many families have a lot of trouble finding help
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Elijah, Age 7
Insurance won’t cover my son’s formula unless he’s tube-fed.
Read moreSutton, Age 4
My FPIES son could only tolerate 1 food (Quinoa) for 3 years without projectile vomiting or having hospitalization level diarrhea. We are burned out trying to get elemental formula covered. We need uniformity on how to ensure children get the
Read moreEleanor, Age 7
Nora was born tox positive to several drugs and social services moved her to my home to be with her bio sibling for adoption. She has had severe GERD and food allergies from birth. She continues to have Failure to
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Katherine, RD
As a nutrition expert, it should be up to me, the family and the healthcare team to decide on how best to treat these children and if nutrition is the ideal treatment, then it should be included as part of the child’s covered treatments. It is frustrating to have to delay or change care if nutrition therapy is not covered. This can worsen illness and also cause undue stress and harm to the child and their family.
Read moreTyler, MD from Idaho
I am a pediatric gastroenterologist and treat children with a variety of digestive conditions that require medical nutrition. I often see patients whose digestive conditions mandate that they be on special diets or supplements and yet these diets cannot be
Read moreCaroline, RD
As a provider, I know what is best for these patients and when covered, the results (i.e. improved absorption, reduced eosinophils, improved growth and weight gain) are nothing short of incredible.
Read moreJustin, Age 22
My husband has been trapped at that job his entire career because of the formula coverage for our son, that we can’t afford to walk away from. We have 3.5 years before he ages out of coverage. It is $24,000/yr, for life. The one formula that works for him is not covered by medicaid in our state. We are almost retirement age and plan to work as long as we can to pay for formula.
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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.
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