Eleanor, Age 7
California · FPIESNora was born tox positive to several drugs and social services moved her to my home to be with her bio sibling for adoption. She ...
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.
Katherine, RD
California · Immunoglobulin E & non-Immunoglobulin E-mediated allergies to food proteins · Medical or Surgical Condition of Malabsorption · Provider StoriesAs a Registered Dietitian who works in a pediatric outpatient gastroenterology and nutrition office, I routinely work with children ...
Deckard, Age 1
California · Phenylketonuria (PKU)Annual cost: $6000
My son has classic PKU and his food options are very limited. We rely heavily on medical foods to fulfill his dietary needs. It is a ...
Lincoln, Age 2
California · FPIESAnnual cost: $3600
Lincoln was diagnosed with a severe milk protein allergy at 2 weeks of age after blood was visibly seen in his stool. His pediatrician ...
Alexander, Age 23
California · EOSINOPHILIC DISORDERSAnnual cost: $4800
My son has eosinophilic gastritis and esophagitis. His foods are very limited and he basically lives off chicken breast and rice. Even ...
Gavin, Age 2.5
California · Phenylketonuria (PKU)Annual cost: $15000
Our sweet Gavin’s future depends on this crucial coverage. Without insurance coverage for his food & formula, we would be unable ...
Robert, Age 11
California · Phenylketonuria (PKU)Annual cost: $18000
It would relieve a lot of stress and tension in our household. Having to pay out of pocket for my son’s formula has brought me to ...
Linkyn, 18 months
California · Phenylketonuria (PKU)My daughter was born with PKU, a rare metabolic disorder. Right now, we are lucky to have insurance cover her formula and medical ...
Luke, Age 4
California · Phenylketonuria (PKU)Annual cost: $3600
My son is only 4. He has a whole life of this expensive cost of life, that he had no choice to live, to hover over him forever. He has ...
Nico, 15 months
California · Phenylketonuria (PKU)Annual cost: $3600
My son who is 15 months old was born with PKU. We have Cigna insurance which covers ZERO low protein medical foods and only covers a ...
Isabelle, Age 2.5
California · Phenylketonuria (PKU)Annual cost: $6600
Isabelle has Classic PKU. She is 2.5 years old and can have 3 grams of natural protein per day. For context, one 8 oz glass of milk ...
Carter, Age 5
California · Inborn Errors of Metabolism and Conditions on the RUSP · Maple syrup urine diseaseAnnual cost: $1800
Our family has been fortunate enough to have very good insurance coverage through an employer which provides 90% coverage for medical ...
Ashlynn
California · Phenylketonuria (PKU)Annual cost: $6996
My insurance provides coverage of Ashlynn’s PKU metabolic formula, ONLY after we have met her deductible. They cover NO medical ...