Caring for a baby with Angelman syndrome can be difficult. Among other challenges, infants with the disorder are often born with very weak muscle tone and have difficulty suckling, swallowing, and nursing.
What are the feeding difficulties in Angelman syndrome?
Infants with Angelman syndrome have weak muscle tone, which makes suckling and swallowing difficult. Patients are also prone to gastroesophageal reflux disease, which may be diagnosed as the rejection of formula. It can be difficult to determine how much your baby is getting if they spit up after each feed.
Babies with Angelman syndrome may not wake up when they need to be fed as healthy infants do. They may have difficulty mustering the strength to cry, or simply be unable to signal their needs.
Here are some tips for parents or caregivers of babies with Angelman syndrome to help ensure the babies receive necessary nutrients:
Talk to the experts
Discuss with your baby’s physician and registered dietitian to determine the best diet and feeding schedule for your baby.
Some babies may need additional supplements to compensate for the fact that they are eating less. In extreme cases, hospital intervention may be necessary.
Parents and caregivers can work with speech therapists to learn exercises to help their baby strengthen the muscles involved in swallowing and nursing. Many hospitals also have a specialist to discuss feeding problems and solutions.
Keep a feeding schedule
Record when your baby was fed and estimate how much formula or breast milk they drank. If they spit up after feeding, record how long after feeding this happened. If your physician or nursing specialist offered recommendations, record what you tried and whether it worked.
Discuss your baby’s feeding schedule with the doctor and dietitian. They can help determine whether your baby is getting enough nutrition.
Other treatment options
If your baby cannot take in enough nutrition through bottle feeding, your doctor may recommend a feeding tube or a surgically placed PEG tube (percutaneous endoscopic gastrostomy) where a feeding tube is surgically connected to the stomach, bypassing the throat so that food or medication can be delivered to the stomach directly.
Last updated: Nov. 27, 2019
Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.