My daughter has Angelman syndrome, she is due to have a gastostromy, is this common of the syndrome?

Question

help!

Answer 1

Here is a website that meay be able to help you.I hope your litle girl is well soon.
http://www.healthline.com/search?q1=angelman%20syndrome&utm_source=genetic_disorders&utm_medium=google&utm_campaign=serp&utm_term=angelman%20syndrome

Answer 2

I'd never heard of Angelman Syndrome, but I googled it and found the website below. I've copied a bit about feeding difficulties for you, but please do have a look at the site for more information.

"Feeding Problems and Oral-Motor Behaviors

Feeding problems are frequent but not generally severe and usually manifest early as difficulty in sucking or swallowing. Tongue movements may be uncoordinated with thrusting and generalized oral-motor incoordination. There may be trouble initiating sucking and sustaining breast feeding, and bottle feeding may prove easier. Frequent spitting up may be interpreted as formula intolerance or gastroesophageal reflux. The feeding difficulties often first present to the physician as a problem of poor weight gain or as a "failure to thrive" concern. Infrequently, severe gastroesophageal reflux may require surgery. "

Answer 3

Hello I have a daughter with a rare syndrome which is undiagnosed.
With your daughters syndrome it does depend on the severity of her condition and for to her to have a gastostromy she obviously finds it difficult to have food orally or may need extra nutrition quickly it is not uncommon it does depend on severity.
I hope she is ok and having a gastostromy will give her all the nutrition she will need to aid her life.
A lot of children who have any type of condition that prevents them to have all their nutition orally or what they are having oral is not enough it is common to have one short or long term. She will benefit from it and you will be taught how to feed her via tube to if you can.
Also not sure where you live but if in England you can get the attendance allowance for her if you have not claimed it please do as it will help.Having a gastostromy is extra care.
Hope everything goes ok for you daughter

Answer 4

hello. A gastrostomy is generally inserted into the stomach if a child is not getting their vital intake of nutrients each day, if your daughter is not tolerating her food orally (or is not likely to in the near future) then a gastrostomy is to tube feed her straight into the stomach, so she still thrives. I work with children who have gastrostomies & its usually because of the above reason. And some due to other illness they have. I Am not sure if it is common of the syndrome,is your child still able to eat orally/is she thriving? It may be due to the Doctors decision to insert one as a precautonary measure in case she is not able to tolerate food orally, its easier to put medicines & milk feeds into her tummy at this point in time, if in doubt check with your doctor, ask him to explain fully why he is going to give your daughter a gastrostomy & follow his advice & ask lots of questions!! Good luck X

Answer 5

sorry i dont know but this site

http://www.healthline.com/galecontent/angelman's-syndrome

is good for information, although im sure as a parent you already know most of the stuff on there.