MSUD powder is expensive - $2,775.00 for about 2 1/2 months of powder and is the mainstay of the diet for an MSUD person. Insurance always denies payment for other protein supplements such as valine and isoleucine which are recommended by the doctor.
We purchase medical insurance from employer. Employer is self insured so not subject to the Pennsylvania Medical Foods Act. MSUD ...
My daughter has a milder form of PKU and therefore does not need as much formula to live a healthy life. However, as she gets older ...
My insurance pays for amino acid modified formula but will not provide any coverage for low protein foods. Low protein food is very ...
I have two sons and only Leo has PKU. We maintain a low protein diet for Leo, but due to the high cost of low protein medical foods, ...
At 1.5 years old she weighed 14 pounds and had g-tube surgery. She's 3 now and has never eaten food.
Our beautiful happy and energetic three year old daughter Danielle was born at 35 weeks New Year’s Day 2016. She was diagnosed at ...
James DeLano is a 12-year-old boy who has lived his life with rare, chronic disease. As a young child, James was diagnosed with an ...
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 ...
Meet Adler! He is an amazing little boy that lives in rural Missouri with his Mom and Dad. Adler was diagnosed with PKU shortly after ...
Our family has been fortunate enough to have very good insurance coverage through an employer which provides 90% coverage for medical ...
Having medical food coverage would mean that I would not have to worry about double insurance for our daughter, and fighting insurance ...
Our family is very grateful that Laila’s PKU was discovered with newborn screening. Once we were able to overcome the fear and ...
Not having to worry about paying for medical nutrition would be a huge relief to our family. NO family should have to pay for these ...
A young couple with a child with PKU in my care made the difficult decision to move to another state and region where they would be able to depend on full medical food and formula coverage and to afford the cost of just one child with PKU.
Staff time alone is the most major barrier. We are fortunate to have a Metabolic Clinic Manager to keep on top of all the insurance ...
The amount of medical debt my family has had to trudge through, during my 43 years of living with PKU, has been financially crippling. ...
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 ...
Better coverage for my son would alleviate the concerns about not being able to afford the medicine he needs .
Insurance info: Our ...
Earlier this year we took custody of our grandson Anthony. He was diagnosed after birth with PKU. He has lived with us since birth, ...
As all parents who experience it, we were overwhelmed once we got the call, at 5 days of age, that our daughter Maeve had been ...
Caroline was born 7 weeks premature. She stopped breathing several times almost dying. Neocate Jr is the only think she eats to ...
Having a child with PKU is extremely time consuming! I am always preparing special food for him and making sure he has what he needs ...
Insurance covers formula (so many cans a month) and also covers up to $5000 of food during the fiscal year July-April. If during the ...
I have a medical condition called Phenylketonuria (PKU). PKU is an inherited metabolic disorder where my body cannot break down ...
The formula is very expensive!...My Grand-daughter and her husband both work and with all the bills cannot afford the formula (which is relevant in this disease)
The formula is very expensive!…My Grand-daughter and her husband both work and with all the bills cannot afford the formula ...
The metabolic disorder itself is such a challenge in learning and dealing with and then to have to worry about the funds to get the food, formula and medical care she needs is another level of added stress.
My daughter was diagnosed with PKU at one week old. The moment that doctor called us it changed our lives forever. The metabolic ...
We are extremely lucky to have identical twins that can share the trials and tribulations that come along with having PKU, but the ...