Maple syrup urine disease (MSUD) is an inherited disorder in which the body is unable to process certain protein building blocks (amino acids) properly. The condition gets its name from the distinctive sweet odor of affected infants’ urine. It is also characterized by poor feeding, vomiting, lack of energy (lethargy), abnormal movements, and delayed development. If untreated, maple syrup urine disease can lead to seizures, coma, and death.
Xander was diagnosed with MSUD at 4 days of life. We were in a hospital that did not know how to treat, was not prepared to treat, and ...
I am aware that we are some of the lucky ones in that we have great medical coverage via TRICARE. Others should be afforded the same opportunity for coverage
Evan was born with MSUD and we were lucky that TRICARE covered his formula and supplements until his transplant. At the time, they did ...
Insurance covers my daughters medical formula but doesn’t cover her medical foods. If my daughters medical foods were covered it ...
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 insurance pays for amino acid modified formula but will not provide any coverage for low protein foods. Low protein food is very ...
We are self-insured. We have had to change health insurances every year for the past several years because the insurance company went ...
It scares me to think about our daughter not having access to her medical formula. This isn’t an option for her, her life depends ...
Our family has been fortunate enough to have very good insurance coverage through an employer which provides 90% coverage for medical ...
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 […]
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 ...