Early Intervention: Speech, Occupational, and Physical Therapy

Medical Disclaimer: This is my experience, and some of my emotions and what we do as a family for our Classic Galactosemia child. Always consult with your medical team about treatment and diet for Classic Galactosemia. The contents of this website, such as text, graphics, images and other material are intended for informational and educational purposes only and not for the purpose of rendering medical advice. The contents of this website are not intended to substitute for professional medical advice, diagnosis or treatment. Although we take efforts to keep the medical information on our website updated, we cannot guarantee that the information on our website reflects the most up-to-date research.

Interventions for Speech Therapy, Occupational Therapies and Physical Therapy:

SURPRISINGLY TO ME NO ONE OFFERED THIS TO US! When connecting to other parents we found this was the way to go. I kindly requested these things for my daughter. For us it was as easy as asking our pediatrician. As a nurse I believe in early intervention. If you know of a high outcome for a medical issue then for me, it is best practice to intervene early. Here is a great article listing statistical outcomes for Galactosemia. If no one is listening to you, print this research article out and give it to your Dr or even insurance company. Ask that they read this before they say no. Out of 509 patients with galactosemia 78% will have speech disorders. 52.2% will have development delay. I made sure to get my daughter involved in these therapies because its easier to intervene now, then later in life. I am glad I did because they picked up on problems I didn’t even see. She is almost 3 and if you didn’t know you would think she is a typical 3 year old. She has tons of vocabulary, runs and runs and rides her scooter. WE WORK HARD AND PLAY HARDER!!!

We also got involved in Babble Boot Camp, an amazing free speech intervention for the research of galactosemia and speech disorders. Questions? Interested? Email Dr. Beate Peter or Dr. Nancy Potter at Babblebootcamp@asu.edu or call (206) 713-5839. These researchers are amazing, kind and so helpful. I highly recommend for your baby. Everything was over my phone on video conferencing.

Each state has a program to help families; Florida has Early Steps. We got involved very early. They said its much easier to get involved before age 3. Now that she is 3 we move onto Child Find which also has interventions. For some reason after age 3 in Florida it is very hard to get in or approved.

Please let me know if you need anything, or help trying to find resources. I will gladly help you research if you need for your state or even country.