Like many parents and caregivers before you, the first few days, weeks and months following a hereditary tyrosinemia (HT-1) diagnosis can be confusing and challenging.
What does this mean for your baby?
A baby born with HT-1 will require medication and a special, tightly-controlled diet to minimize risk of associated health problems for life. Get advice from healthcare professionals you trust, including a dietician that specializes in helping people with an amino acid disorder. Even as you navigate the early days of the diagnosis, keep in mind that babies born with HT-1 can live full and fulfilling lives.
Also, if you’re like many parents of a child with HT-1, you quickly learn what your child can and cannot eat or drink. Many parents find they become experts on avoiding forbidden food and substituting formula and food that helps their baby thrive just like any other. As your baby starts socializing with other babies and goes on ‘play dates’ – you’ll learn to pack the best food and snacks ahead of time.
Your healthcare professional will also work with you, a specially trained dietician and other clinicians to prescribe special formula, nutritional supplements and/or medication to help your child thrive at every stage of development. Don’t hesitate to ask questions or reach out to your healthcare professional when you have concerns.
Remember, you’re not alone. Other families have faced the same diagnosis. There are support groups and organizations with reputable information online, including:
- About Tyrosinemia: New Parents' Guide
- Children Living with Inherited Metabolic Diseases (CLIMB)
- Baby’s First Test
Cycle Pharmaceuticals, the company that manufactures NITYR (nitisinone) tablets, can be another source of essential support and information about HT-1.
Cycle offers a specialized NITYR Patient Support Program, for the families facing the challenges associated with this condition.
Sometimes questions come up during an overnight feed, so our Patient Support Team can provide you with access to a pharmacist to address your questions or provide guidance and support. Just call: 1-800-847-8714.