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	<title>Symptom Advice .com &#187; ucsf</title>
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		<title>A life without food: Quest for a cure continues</title>
		<link>http://symptomadvice.com/a-life-without-food-quest-for-a-cure-continues/</link>
		<comments>http://symptomadvice.com/a-life-without-food-quest-for-a-cure-continues/#comments</comments>
		<pubDate>Mon, 16 May 2011 02:51:12 +0000</pubDate>
		<dc:creator>Symptom Advice</dc:creator>
				<category><![CDATA[stomach symptoms]]></category>
		<category><![CDATA[ennis]]></category>
		<category><![CDATA[stomach]]></category>
		<category><![CDATA[ucsf]]></category>
		<category><![CDATA[x rays]]></category>

		<guid isPermaLink="false">http://symptomadvice.com/a-life-without-food-quest-for-a-cure-continues/</guid>
		<description><![CDATA[EDITOR&#8217;S NOTE: This is the &#115;&#101;&#099;&#111;&#110;&#100; &#115;&#116;&#111;&#114;&#121; &#105;&#110; &#097; three-part series. CHICO &#8212; &#097;&#102;&#116;&#101;&#114; &#097; parade &#111;&#102; hospital and doctor visits that led nowhere, Hayley Ennis, now 16, and &#104;&#101;&#114; mother, Jill Ennis, &#119;&#101;&#114;&#101; &#108;&#111;&#111;&#107;&#105;&#110;&#103; &#116;&#111; &#097; &#110;&#101;&#119; hope. In March 2010, Hayley&#8217;s continuing search for &#097; cure &#116;&#111;&#111;&#107; &#104;&#101;&#114; &#116;&#111; the UC San Francisco [...]]]></description>
			<content:encoded><![CDATA[<p></p><p><img src="http://symptomadvice.com/wp-content/uploads/2011/05/1305514272-54.png" style="clear:both;clear:both;margin:0 15px 15px 0" />EDITOR&#8217;S NOTE: This is the &#115;&#101;&#099;&#111;&#110;&#100; &#115;&#116;&#111;&#114;&#121; &#105;&#110; &#097; three-part series.
<p>CHICO &#8212; &#097;&#102;&#116;&#101;&#114; &#097; parade &#111;&#102; hospital and doctor visits that led nowhere, Hayley Ennis, now 16, and &#104;&#101;&#114; mother, Jill Ennis, &#119;&#101;&#114;&#101; &#108;&#111;&#111;&#107;&#105;&#110;&#103; &#116;&#111; &#097; &#110;&#101;&#119; hope.
<p>In March 2010, Hayley&#8217;s continuing search for &#097; cure &#116;&#111;&#111;&#107; &#104;&#101;&#114; &#116;&#111; the UC San Francisco Medical Center, and the first visit was probably the &#119;&#111;&#114;&#115;&#116; day &#111;&#102; the whole ordeal.
<p>&#8220;By the time I went &#116;&#111; the appointment at USCG, I was throwing up at least 15 times &#097; day. I was barely functioning.&#8221;
<p>Even &#119;&#105;&#116;&#104; volumes &#111;&#102; charts, files, X-rays and medical tests &#105;&#110; hand, when &#097; teenage girl &#119;&#104;&#111; is suffering vomiting and subsequent weight loss first sees &#097; &#110;&#101;&#119; doctor, the question &#111;&#102; bulimia &#111;&#114; some &#111;&#116;&#104;&#101;&#114; eating disorder &#099;&#111;&#109;&#101;&#115; up.
<p>Without &#112;&#108;&#097;&#110;&#110;&#105;&#110;&#103; &#116;&#111;, Hayley &#102;&#111;&#117;&#110;&#100; &#097;&#110; efficient &#119;&#097;&#121; &#116;&#111; avoid &#116;&#104;&#111;&#115;&#101; questions when she &#104;&#097;&#100; &#104;&#101;&#114; first visit &#116;&#111; UCSF.
<p>She &#104;&#097;&#100; started vomiting before she &#103;&#111;&#116; &#116;&#111; the hospital, and, &#8220;I vomited &#116;&#104;&#114;&#111;&#117;&#103;&#104;&#111;&#117;&#116; &#109;&#121; entire appointment and it was &#097; long appointment.&#8221;
<p>Apparently, that was also the day when Hayley&#8217;s stomach &#101;&#110;&#116;&#105;&#114;&#101;&#108;&#121; &#115;&#116;&#111;&#112;&#112;&#101;&#100; working. Technically, it is &#097; condition called gastroparesis, &#097; situation where food &#106;&#117;&#115;&#116; won&#8217;t pass through the stomach even though there are &#110;&#111; obstructions.
<p>&#8220;From that day &#102;&#111;&#114;&#119;&#097;&#114;&#100;, I did &#110;&#111;&#116; keep &#100;&#111;&#119;&#110; &#097; sip &#111;&#102; water &#111;&#114; &#097;&#110; ounce &#111;&#102; food.&#8221;
<p>With &#104;&#101;&#114; stomach &#110;&#111;&#116; tolerating even the most mild food and liquid, the UCSF doctors &#104;&#097;&#100; &#116;&#111; rely &#111;&#110; &#097; feeding tube &#116;&#111; get nutrition into the teen.
<p>Usually, &#115;&#117;&#099;&#104; &#097; tube is inserted &#105;&#110; the nose and &#103;&#111;&#101;&#115; into the stomach where the liquid food is &#106;&#117;&#115;&#116; dribbled &#105;&#110;, but that wouldn&#8217;t work &#119;&#105;&#116;&#104; Hayley. &#104;&#101;&#114; stomach instantly ejected even the liquid food that hit it. As &#097; result, the doctors &#104;&#097;&#100; &#116;&#111; thread the tube &#112;&#097;&#115;&#116; &#104;&#101;&#114; stomach and &#100;&#105;&#114;&#101;&#099;&#116;&#108;&#121; into &#104;&#101;&#114; intestines so the liquid feeding &#119;&#111;&#117;&#108;&#100; stay &#105;&#110; &#104;&#101;&#114;.
<p>In subsequent months, the motivated teen went &#116;&#111; school &#119;&#105;&#116;&#104; the nose tube taped &#116;&#111; &#104;&#101;&#114; cheek.
<p>The fact that the feeding &#104;&#097;&#100; &#116;&#111; bypass &#104;&#101;&#114; stomach &#104;&#097;&#100; &#097;&#110;&#111;&#116;&#104;&#101;&#114; unanticipated side effect.
<p>The presence &#111;&#102; food &#105;&#110; the stomach is what tells the brain you are &#110;&#111;&#116; hungry, and the absence &#111;&#102; food there tells the brain you need food.
<p>&#8220;What that means is you are constantly hungry. So for the whole year I was starving. I was getting &#109;&#121; nutrition, but as far as feeling, I was hungry. I made &#097; promise, now I will &#110;&#101;&#118;&#101;&#114; &#115;&#097;&#121; I&#8217;m starving.&#8221;
<p>The failure &#111;&#102; &#104;&#101;&#114; stomach also meant the persistent pain she &#104;&#097;&#100; been suffering for months increased.
<p>Using the traditional one-to-10 scale for pain severity, Jill said Hayley could function &#119;&#105;&#116;&#104; pain &#105;&#110; the four-through-six level. She could go &#116;&#111; school. When things hit the seven-to-10 level &mdash; and they did &mdash; &#8220;She was flat &#111;&#110; &#104;&#101;&#114; back, &#114;&#101;&#097;&#108;&#108;&#121; miserable.&#8221;
<p>The question &#111;&#102; what could be &#100;&#111;&#110;&#101; for the pain was &#115;&#111;&#109;&#101;&#116;&#104;&#105;&#110;&#103; &#111;&#102; &#097; medical conundrum. &#097;&#110;&#121; strong pain medication slows &#097; healthy person&#8217;s motility, and &#119;&#105;&#116;&#104; Hayley, &#097;&#110;&#121;&#116;&#104;&#105;&#110;&#103; that &#119;&#111;&#117;&#108;&#100; further retard &#104;&#101;&#114; non-existent motility made the gastroenterologists balk.
<p>At &#111;&#110;&#101; point while she was &#105;&#110; the hospital and &#105;&#110; crushing pain, the attending pediatricians &#119;&#101;&#114;&#101; ordering morphine &#116;&#111; give &#104;&#101;&#114; some relief, and when the gastroenterologists arrived, they &#119;&#111;&#117;&#108;&#100; angrily countermand the order.
<p>Eventually &#097;&#108;&#108; &#111;&#102; the doctors reached &#097;&#110; understanding that healing and agony don&#8217;t work &#116;&#111;&#103;&#101;&#116;&#104;&#101;&#114; and the pain meds &#119;&#101;&#114;&#101; allowed.
<p>The UCSF visit did result &#105;&#110; &#097; &#110;&#101;&#119; diagnosis. They &#102;&#111;&#117;&#110;&#100; evidence &#111;&#102; eosinophilic gastroenteritis, which is &#097;&#110; allergic reaction &#105;&#110; the stomach that &#099;&#097;&#110; cause &#097;&#108;&#108; &#111;&#102; the symptoms Hayley was presenting.
<p>So she was &#115;&#101;&#110;&#116; home &#119;&#105;&#116;&#104; renewed hope and &#097; trio &#111;&#102; medications &#116;&#111; try, &#111;&#110;&#101; at &#097; time, that &#119;&#101;&#114;&#101; meant &#116;&#111; improve &#104;&#101;&#114; motility. The medications failed and the hope crashed again.
<p>Both Jill and Hayley said it was &#097;&#098;&#111;&#117;&#116; this time, &#105;&#110; the late summer &#111;&#102; last year, that they &#098;&#101;&#103;&#097;&#110; &#116;&#111; wonder &#097;&#098;&#111;&#117;&#116; the future. &#110;&#111;&#116;&#104;&#105;&#110;&#103; was working, and &#110;&#111;&#098;&#111;&#100;&#121; &#115;&#101;&#101;&#109;&#101;&#100; &#116;&#111; &#104;&#097;&#118;&#101; &#097;&#110;&#115;&#119;&#101;&#114;&#115;.
<p>Hayley said she realized that tube feeding couldn&#8217;t go &#111;&#110; forever and when the body &#119;&#111;&#117;&#108;&#100; &#110;&#111; longer tolerate the tube, the option was intravenous fluids. That &#119;&#111;&#117;&#108;&#100; work for &#111;&#110;&#108;&#121; so long.
<p>The next option was &#097; gastric pacemaker, &#097; device that passes &#097; &#116;&#105;&#110;&#121; electric current through the stomach muscles &#116;&#111; make them flex &#116;&#111; &#109;&#111;&#118;&#101; food &#097;&#108;&#111;&#110;&#103;.
<p>Hayley said the problem there was the gastric pacemaker doesn&#8217;t work for everybody, and patients as young as &#104;&#101;&#114; weren&#8217;t supposed &#116;&#111; be candidates for the pacemaker.
<p>Even &#097;&#102;&#116;&#101;&#114; everything that &#104;&#097;&#100; happened, and the growing fear that &#104;&#101;&#114; survival &#109;&#105;&#103;&#104;&#116; be &#105;&#110; doubt, &#097;&#110; answer was &#106;&#117;&#115;&#116; &#097;&#114;&#111;&#117;&#110;&#100; the corner.
<p>Staff writer Roger H. Aylworth &#099;&#097;&#110; be reached at 896-7762 &#111;&#114; raylworth@chicoer.&#099;&#111;&#109;.</p>
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