On top of the cost of formula, I have to buy specialty foods amounting to about $200 per month plus regular grocery store items for my son, fresh fruits and vegetables. Plus groceries for rest of family. My son will then age out of coverage per current policies. I worry about what will happen, will he have an occupation that will allow him to manage the cost?

Ian, Age 12

 3-Hydroxy-3-methyglutaric aciduria · Arizona
Annual cost: $3600

Having better coverage will will certainly lower our costs. To have to pay escalating insurance premiums plus the cost of formula and ...

At 1.5 years old she weighed 14 pounds and had g-tube surgery. She's 3 now and has never eaten food.

Danielle, Age 3

 Florida · SBS
Annual cost: $12000

Our beautiful happy and energetic three year old daughter Danielle was born at 35 weeks New Year’s Day 2016. She was diagnosed at ...

Angelica

 Kansas · Phenylketonuria (PKU)
Annual cost: $12000

Stepping out of the Blue – (Bear with me for a moment, this will all make sense in the end) Where it all began: I located a new ...

Mason, Age 2

 Iowa · Phenylketonuria (PKU)
Annual cost: $12000

Mason is our second child and our only with PKU. Like many others we had never heard of PKU until our son was diagnosed through the ...

Coverage for medical foods would mean everything.

Noah, Age 6

 New York · SBS
Annual cost: $12000

Coverage for medical foods would mean everything. We could pay our bills and not live paycheck to paycheck. Blended food is not ...

Emalynn

 Phenylketonuria (PKU) · Virginia
Annual cost: $5040

When Emalynn was born and diagnosed with PKU, we had no idea what to expect or think. Luckily we were blessed with a bright happy 3 ...

It is really hard to have a child with a metabolic disorder. I pay over $600.00 per month for insurance coverage, It was prior to Obama Care $1200.00 per month. This does not leave me much funds left over to buy medical Nutrition food, my insurance covers the formula which is so expensive. There has […]

Sabastian

 Maple syrup urine disease · Nevada
Annual cost: $3000

It is really hard to have a child with a metabolic disorder. I pay over $600.00 per month for insurance coverage, It was prior to ...

Draegen, Age 18

 Phenylketonuria (PKU) · Texas
Annual cost: $6000

When my son, Draegen, was younger, he was on Medicaid. It covered his formula, but only a very specific kind. He ended up burnt out on ...

Colton, Age 6

 Ohio · SBS
Annual cost: $16800

Colton is almost 7 years old. He was born at 30 weeks and lost 2/3 of his small bowel due to a mid-gut volvulus. He has been on an ...

Kayla

 Oregon · Phenylketonuria (PKU)

When I moved to the West Coast by myself in 2014, I had to learn everything on my own like finding a clinic and handling coverage. I ...

Clayton, Age 4

 Ohio · Phenylketonuria (PKU)
Annual cost: $5040

Having the medical nutrition covered by our insurance would grealty imporve the options and the cost of the food that Clayton would ...

Turning 26 and navigating through my own insurance was a nightmare.

Corey, Age 26

 New York · Phenylketonuria (PKU)

Turning 26 and navigating through my own insurance was a nightmare. NYS Medicaid is a blessing but not sure how long I can stay on ...

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 ...

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.

Vikram Christian, MD

 EOSINOPHILIC DISORDERS · Minnesota · Provider Stories

As a pediatric gastroenterologist, I take care of children with diseases of the digestive tract. Medical nutrition is often the ...