Spring 2010: Sleep Disturbance & G-Tube Feeding - CdLS

Characteristics of Sleep Disturbances in CdLScontinued from page 4sleep patterns and breathing. Weighted blankets mayhelp those with CdLS and autistic features. Medicationsfor insomnia may also be used including melatonin,clonidine, zolpidem (Ambien®) and zaleplon (Sonata®).It is important to note, however, that most medicationsprescribed for insomnia are not FDA approved forchildren.In conclusion, sleep disordered breathing, insomnia andsleepiness appear to be common in CdLS. As previousstudies have shown, it is unclear if sleep disturbancecorrelates to behavioral and learning issues in thispopulation. Further in-depth studies will help us learnmore about this and should serve to improve quality oflife for both those with CdLS and their families.1. Basile E, Villa L, Selicorni A, Molteni M. The behavioral phenotype ofCornelia de Lange Syndrome: a study of 56 individuals. J Intellect DisabilRes. 2007 Sept;51:671-681.2. Berney T, Ireland M, Burn J. Behavioral phenotype of Cornelia de LangeSyndrome. Arch Dis Child 1999 Oct;81(4):333-336.3. Hall SS, Arron K, Sloneem J, Oliver C. Health and sleep problems inCornelia de Lange Syndrome: a case control study. J Intellect Disabil Res.2008 Mar;52:458-468.4. Kline A. Clinical delineation of sleep disturbance in Cornelia de LangeSyndrome. American Society of Human Genetics, Annual meeting, Oct2007.Closer Look: G-Tubes— A Tale of Two Childrencontinued from page 7Four years later, Breeze, now six, continues on Pediasure andonly eats pureed foods, but she remains tube free.Margaret’s advice to other parents is to “keep trying andthen try some more. I tried every cup on the market andfound the cheapest, most available ones worked best.” Shealso believes that controlling reflux, which Breeze takesmedication for, was a big part of being able to eliminatethe G-tube.Common Types of Feeding TubesAll tubes can be used to give feedings or medications. Thereare cases in which a special tube is needed to drain air orliquid, as well as a tube that provides the child their feedingsinto the small intestine rather than the stomach.A gastric feeding tube, or G-tube, is a tube inserted througha small incision in the abdomen into the stomach. Inaddition to feeding, the tube can be used to “vent” thechild’s stomach of air.A nasogastric feeding tube, or NG-tube, is passed throughthe nostril, down the esophagus and into the stomach.A jejunostomy tube, or J-tube, is inserted into the smallbowel called the jejunum, bypassing the stomach.A nasojejunal tube, or NJ-tube, is passed through thenostril and guided (by X-ray) into the jejunum.Yes, I want to make a difference in the lives of children with CdLS!Enclosed is my tax-deductible gift of:‪ Other $ ‪ $500 ‪ $250 ‪ $100 ‪ $50 ‪ $35‪ Use my gift to help children with CdLS‪ I have included the CdLS Foundation inmy will or trust.Charge my gift to: ‪ VISA ‪ MC ‪ AMEXCard #: ___________________________________Expiration: ________ Security Code: ___________Print name on card: __________________________Signature: __________________________________Email address(es): ___________________________Donate online at www.CdLSusa.org.One hundred percent of your contribution is tax deductible.1-800-753-235715 Sp r i n g 2010