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 ...
Earlier this year we experienced what not being able to afford formula & medications or have no insurance coverage is like for so ...
The biggest frustration as a provider is knowing that many patients are not receiving the care they need to manage their conditions. The second biggest frustration is that even when an insurance “covers” medical foods, it may still not be obtainable since many ‘in-network’ distributors will not supply the needed products.
Coverage of medical foods is a large part of my practice in both my time-effort and my care recommendations for patients. For every ...
Turning 26 and navigating through my own insurance was a nightmare.
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 ...
Kennedy was diagnosed with PKU at 5 days old. Left untreated this disorder can lead to serious brain damage. While we are very ...
Lincoln was diagnosed with a severe milk protein allergy at 2 weeks of age after blood was visibly seen in his stool. His pediatrician ...
I got pregnant while I was in high school and never finished. I was alone in my pregnancy and until he was 3 months old. I don’t ...
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.
My son was diagnosed with Food Protein Induced Enterocolitis Syndrome when he was 11 months old. Following scopes, he was later ...
I’m a 30, soon to be 31 year old female who was diagnosed with PKU at 1 month old and currently reside in New Jersey. Growing ...
I will begin with saying there are others that are in far greater need of medical nutrition coverage than myself. I have been brought ...
Liam has struggled with GI issues, food avoidance, and maintaining growth since he was born, but the issues intensified once we tried ...
Thirteen years ago our Daughter was born with Phenylketonuria (PKU). Since then for our family of seven we have begun the upward ...
For now while she is a baby our insurance covers some of her formula, but none of her medically necessary supplements and none of the ...
Louie was diagnosed when he was one week old. We were told to expect motor delays, intellectual disability, and vision loss, assuming ...
My name is Teresa Boyette I live in Kinston NC I was born overseas where nb knew bout pku tills American soldier discovered it.i ...
Our beautiful baby boy Aidan was born last July and shortly thereafter diagnosed with PKU. Once we learned he could grow and develop ...
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 ...
We have three beautiful children, two of which have PKU. We spend over $120 a month on medical formula, foods, and medication for PKU. ...
My name is Renee. I am recently married in August 2017. I am currently on pre-con trying for our first child. My levels have been ...
We are self-insured. We have had to change health insurances every year for the past several years because the insurance company went ...
When our firstborn was just 7 days old, we received a call to rush him to the hospital. He had tested positive for PKU. We, including ...
I have three children, my six-year-old twin daughters Lucy and Lily and my three-year-old son Lucas. Lucy and Lucas were diagnosed at ...
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 ...
I was diagnosed with PKU late, at thirty days. I have some issues, mainly short term memory, due to my late diagnosis. I graduated ...
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 ...