PWSA Blog

Ask Nurse Lynn: When to Start Growth Hormone

Question:

Male, 5 weeks old, Deletion

Our baby was diagnosed with Prader-Willi Syndrome at 3 weeks old. He is 5 weeks old, in the NICU. My family has been reading about how important growth hormone treatment is. We want to get our baby started on it but not sure if he is too little. Should we be starting that now? How do we even do that?

Nurse Lynn’s Response:

Congratulations on the birth of your precious baby! While receiving a diagnosis of Prader-Willi Syndrome can feel overwhelming, it’s important to know there is an abundance of support and care available to help you and your child thrive. Your love and dedication will have a profound impact on their well-being.

Growth hormone therapy is one of the treatments that can provide significant benefits for children with PWS. However, it does not need to begin immediately in the NICU. Oftentimes, families are not able to bring home the medication if they start in the NICU and they will have to stop the medication until they can establish care with a pediatric endocrinologist who will continue to prescribe the medication and oversee the necessary lab testing.  Hospital care coordinators can often assist in scheduling your first appointment with a specialist before your baby goes home.

Starting growth hormone therapy around 4-6 months is common, but initiating treatment before one year of age is considered most beneficial. There have not been studies that show significant advantages to starting earlier than this timeframe. Remember, a slight delay in starting therapy won’t compromise your baby’s long-term outcomes.

You’re not alone in this journey, and there are many resources and professionals available to support you and your family. Your care and advocacy are the most important factors in your baby’s well-being.

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