My take-away from the Debra’s PCC in Orlando – Part 6

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Here is more information about several talks from the conference from July 31, 2012:

Common Gastrointestinal Problems in Patients with EB & Nutritional Challenges in EB People with EB and Clinicians Working Together.

These two talks were done by Dr. Michael Farrell & Dr. Lynne Hubbard respectively. I have to be honest-both presentations were old hat to me and presented no new information, just strengthen my beliefs that I’ve been doing right by my son; however, in an effort to be thorough, here’s what they entail:

Depending on the form of EB, the esophagus can be very compromised or very little if none. Scarring within the esophagus can reduce the size of it, causing difficulty in the passage of food, even liquids. Many times children will experience episodes of food impaction with the expectoration of large amounts of mucous. Refusal to eat due to pain compromises the patient’s nutrition at a time where it’s most needed for wound healing. A Barium Swallow may be ordered by the gastroenterologist to assess the need for treatments such as esophageal dilatation. Dilatation is a procedure done under light sedation that incorporates the use of a small balloon to increase the size of the esophageal opening.

In instances where esophageal stricturing is so severe, dilatation may not be helpful, a gastrostomy tube or gastric button device may be indicated to increase the individual’s nutritional intake. A gastrostomy tube is inserted to an opening (stoma) into the stomach for the delivery of nutrients, fluids and medications. The procedure is usually done by a surgeon or a gastroenterology surgeon. In many instances feedings through the gastrostomy tube are given overnight using a pump. (Please note the head of the bed should be slightly elevated when infants/ children are receiving feedings.)

The use of gastrostomy tubes may be helpful in the nutritional management of infants and small children in EB who do not have esophageal involvement but need nutritional enhancement intake for growth purposes and wound healing, although for people also use supplements that improve their body and mind, since there are also supplements made just for improving performance and focus, and not that difficult to get from sites as

If naso gastric tubes are used it is usually short term due to risk