Participation in this study will help better our understanding of how development, behavior and communication change in individuals with AS over the course of their lives. We may know a lot about AS, but there are certain ages and issues that have never been studied. The AS Natural History Study will find out what life with AS is really like throughout the lifetime.
- Individuals with Angelman syndrome of any age are welcome.
- Participants will visit a study location once a year. At each visit, participants will have a physical exam as well as answer questions and complete surveys.
For more information and questions, call (617) 919-6008 or email ASNaturalHistoryStudy@childrens.harvard.edu.
Following are portions of a Natural History Study presentation given by Wen-Hann Tan at the 2019 ASF Family Conference:
To see a list of submitted and published research using data obtained directly from the Natural History Study, visit Research > Current Research Studies > Angelman Syndrome Natural History Study.
To prevent the nausea sometimes caused by general anesthesia medication, some parents request that an anti-nausea drug be administered in the IV during surgery.
The BRAT diet is a diet for patients with gastrointestinal distress such as diarrhea, dyspepsia, and/or gastroenteritis. The BRAT diet is a bland diet that consists of foods that are low in fiber. Low-fiber foods were recommended as it was thought that foods high in fiber cause gas and possibly worsen gastrointestinal upset.
BRAT is an acronym for bananas, rice, applesauce, and toast, the staples of the diet. Extensions to the BRAT diet include BRATT (with tea), BRATTY (with tea and yogurt), and BRATCH (with chicken, often boiled). Sometimes, the “T” represents tapioca. In addition to dietary restrictions, medical professionals recommended that all patients, regardless of age, drink plenty of fluids to prevent dehydration, along with oral rehydration solutions to replace the depleted electrolytes to avoid salt imbalance. Severe, untreated salt imbalance can result in “extreme weakness, confusion, coma, or death.
Foods to avoid if you suffer from nausea include:
- Greasy, oily, and spicy foods
- Milk and dairy products
- Raw vegetables like corn, cabbage, onions and beets
- Salmon and sardines
- Pork and veal
- Fruits such as oranges, grapefruits, cherries, berries, and figs
If you or anyone you know is suffering from any of the following symptoms along with nausea, contact your doctor or emergency room immediately:
- If you have been vomiting for more than a day with no respite
- If there is no retention of fluids for 8 hours if you are a child or 12 hours in the case of adults
- If there is blood or a coffee-ground like substance in your vomit
- If you have a headache, stomachache or stiff neck
- If you are exhibiting signs of dehydration such as dry mouth, sunken eyes, increase in thirst, and infrequent urination
- If your child has taken aspirin
- If your child is lethargic or unusually irritable
- If the nausea is prolonged
- If home remedies are not working
- If there was an head injury
- If there is a fever (especially in the case of children)
- If there is a feeling of confusion and lack of alertness
- If there is a rapid pulse or irregular heartbeat
- If there is difficulty in breathing
Angelman Family Contributions
Before our daughter has any surgeries with general anesthesia, we request the medication Zofran to prevent nausea!
Alice, email@example.com, angel Whitney, age 38, Del+ Class 1