tag:blogger.com,1999:blog-48570699853116807492024-03-05T03:32:57.296-06:00Abernethy MalformationUnknownnoreply@blogger.comBlogger7125tag:blogger.com,1999:blog-4857069985311680749.post-43983290513801174332019-07-21T07:53:00.001-05:002019-07-21T08:16:00.015-05:00<span style="color: blue; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b>ABERNETHY MALFORMATION LIVE INSTAGRAM Q & A</b></span><br />
<span style="color: blue; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b><br /></b></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgckCE0hS0o5Tm_2j9NxEnAbL6ELrz597M-2vs2sNClW54CheP9o7RfJXoheQ8W3vdAHs8y4pk-9vWj1ubEdQ4BKWT-ErGhN4eKAREQ6LqnraDa5gI0BjMzTEa5czNjwKWl3P5ivZtnooc/s1600/IMG_7714.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="544" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgckCE0hS0o5Tm_2j9NxEnAbL6ELrz597M-2vs2sNClW54CheP9o7RfJXoheQ8W3vdAHs8y4pk-9vWj1ubEdQ4BKWT-ErGhN4eKAREQ6LqnraDa5gI0BjMzTEa5czNjwKWl3P5ivZtnooc/s320/IMG_7714.jpg" width="272" /></a></div>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Recently I was honored to meet with Dr. Superina from Lurie Children's Hospital in Chicago and have the opportunity to interview him. Parents and patients gathered their questions about living with an Abernethy malformation.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">You can see the interview here in the following link. Click on the Lurie Children's Video:</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><a href="https://linktr.ee/abernethylife">INSTAGRAM Q & A</a></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span>
<span style="color: blue; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b><br /></b></span>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4857069985311680749.post-88926073150822014352015-02-26T13:58:00.000-06:002015-02-26T14:12:53.174-06:00.<br>
<strong><span style="color: blue; font-family: Arial, Helvetica, sans-serif; font-size: x-large;">HOPE IS POWERFUL, DON'T EVER LET GO OF HOPE!</span></strong><br>
<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLqA6ObF0x5eMudOzhVSXOZ5eXE0GZFfzVPfTUze9rf12IBK7hXMMBfSfTpytDTv3v0iOmmyGrORNQnuLO47WduKnSiuqkGHbPm2xRBx93-ZjBNZcsvm6UEpDDD3KVx7fXv-1XUdaiHLk/s640/blogger-image-1009689472.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLqA6ObF0x5eMudOzhVSXOZ5eXE0GZFfzVPfTUze9rf12IBK7hXMMBfSfTpytDTv3v0iOmmyGrORNQnuLO47WduKnSiuqkGHbPm2xRBx93-ZjBNZcsvm6UEpDDD3KVx7fXv-1XUdaiHLk/s640/blogger-image-1009689472.jpg"></a></div><br><div><br></div><div>
Feeling blessed. God is good!</div><div><br></div><div> Maddi had an article written about her story by Amelia Aiello at Lurie Children's. </div><div><br></div><div>Please copy and forward this link to share with at least three people! ;)<br>
<br>
<a href="http://luriechildrens.tumblr.com/post/108926614442/through-persistence-hope-we-found-a-cure-for">http://luriechildrens.tumblr.com/post/108926614442/through-persistence-hope-we-found-a-cure-for</a></div>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4857069985311680749.post-27781659696107811912012-05-02T10:24:00.003-05:002012-10-18T09:24:42.484-05:00<strong><span style="color: #0b5394; font-family: Arial, Helvetica, sans-serif; font-size: x-large;">UPDATE</span></strong><br />
10/18/2012<br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Maddi is now off of ALL her medications!!! For the first time in 5 years. . .</span><br />
<br />
5/12/2012<br />
<span style="color: blue; font-family: Arial; font-size: large;"><span style="color: black;">Maddi used to have an Abernethy malformation/Portosystemic Shunt (PSS). On October 3rd, 2011 - - all because of one life changing e-mail from Dr. Superina - - Maddi received her life saving surgery.</span></span><br />
<br />
<span style="color: blue; font-family: Arial; font-size: large;"><span style="color: black;">The surgery at Children's Memorial Hospital in Chicago, IL (now called Ann and Robert H. Lurie Children's Hospital of Chicago) <span style="font-family: Times New Roman; font-size: small;"> </span>CURED Maddi of the "rare" disease and saved her life! Please join me in my journey of hope and persistence!</span></span><br />
<br />
CLICK HERE FOR DR. SUPERINA'S PORTO-SYSTEMIC SHUNT SURGERY: <a href="http://www.ncbi.nlm.nih.gov/pubmed/21292079">MEDICAL JOURNAL ON MADDI'S LIFE SAVING SURGERY</a><span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 14pt;"></span>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4857069985311680749.post-84456308124706645442008-10-05T08:14:00.052-05:002015-02-26T15:17:03.310-06:00<span style="color: #000099; font-family: verdana; font-size: 180%;"><strong>DEFINITION</strong></span><br />
Updated 5/12/2012<br />
<div align="center">
<span style="font-family: arial; font-size: 130%;">A <span class="blsp-spelling-error" id="SPELLING_ERROR_0">portosystemic</span> shunt (<span class="blsp-spelling-error" id="SPELLING_ERROR_1">PSS</span>) also know as an <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Abernethy</span> malformation or a liver shunt, is a vascular connection effecting the body's circulatory system.</span></div>
<div align="center">
<span style="font-family: arial; font-size: 130%;">In most people, blood from the stomach, intestines, spleen and pancreas drains into the liver through a large vein called the "portal" vein. With a <span class="blsp-spelling-error" id="SPELLING_ERROR_3">portosystemic</span> shunt, blood draining from the portal system bypasses ("shunts" past) the liver and directly enters the general circulation. As a result the liver does not get a chance to clean or filter the blood.</span></div>
<div align="center">
<span style="font-family: arial; font-size: 130%;">A <span class="blsp-spelling-error" id="SPELLING_ERROR_4">portosystemic</span> shunt can be present at birth (i.e. congenital) or <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">acquired</span> as the result of an underlying liver disease that was not present at birth. This blog discusses a congenital <span class="blsp-spelling-error" id="SPELLING_ERROR_6">portosystemic</span> shunt.</span></div>
<div align="center">
<strong><span style="font-family: arial; font-size: 130%;">Dr. Karen Tobias from the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">University</span> of <span class="blsp-spelling-corrected" id="SPELLING_ERROR_8">Tennessee</span> is a liver shunt "guru" in the animal world.</span></strong></div>
<div align="center">
<strong><span style="font-family: arial; font-size: 130%;">I have included her website for detailed information.</span></strong></div>
<div align="center">
<strong><span style="font-family: arial; font-size: 130%;">Click on the link below.</span></strong></div>
<div align="center">
<strong><span style="color: #3333ff; font-family: Arial; font-size: 180%;"><a href="http://www.vet.utk.edu/clinical/sacs/shunt/faq.php">What is a Liver Shunt?</a></span></strong></div>
<br />
<div align="center">
<span style="font-family: arial;"><span style="color: #000099;"></span></span> </div>
<br />
<div align="center">
<span style="font-family: arial; font-size: 130%;"><span style="color: #000099;">For a detailed <em>medical</em> <span class="blsp-spelling-corrected" id="SPELLING_ERROR_10">description </span></span></span><span style="font-family: arial; font-size: 130%;"><span style="color: #000099;">by Dr. R. <span class="blsp-spelling-error" id="SPELLING_ERROR_11">Superina</span> and Dr. Morgan of </span></span><span style="font-family: arial; font-size: 130%;"><span style="color: #000099;">congenital <span class="blsp-spelling-error" id="SPELLING_ERROR_12">portosystemic</span> shunt classifications </span></span><span style="font-family: arial; font-size: 130%;"><span style="color: #000099;">see the right column of this blog.</span></span></div>
Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4857069985311680749.post-76863712448980282462008-10-05T08:08:00.006-05:002011-05-21T12:30:27.349-05:00<span style="color:#3333ff;"><span style="font-family:verdana;font-size:180%;"><strong>HISTORY</strong></span></span><br /><span style="color:#3333ff;"><br /></span><br /><span style="font-family:verdana;font-size:130%;">CAPV (Abernethy Malformation) was first reported by </span><a href="http://www.whonamedit.com/doctor.cfm/107.html"><span style="font-family:verdana;font-size:130%;color:#cc0000;"><em>John Abernethy</em></span></a><span style="font-family:verdana;font-size:130%;"> in 1793. </span><a href="http://www.npg.org.uk/live/search/person.asp?LinkID=mp00015"><span style="font-family:verdana;font-size:130%;color:#cc0000;"><em>He </em></span></a><span style="font-size:130%;"><span style="font-family:verdana;">was an English anatomist, physiologist, and surgeon.<br /><br />In 2003, only 31 cases of Abernethy malformation, mostly in children (80%) were detected in the world. Since Abernethy malformation can be without symptoms, the number of undiagnosed cases is not known. </span><span style="font-family:verdana;">Possibly due to the increased recognition of Abernethy malformation the number of diagnosed cases appears to be increasing.</span></span>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4857069985311680749.post-74261126755934893322008-10-05T07:47:00.016-05:002011-05-21T13:21:11.164-05:00<span style="font-family:verdana;font-size:180%;color:#3333ff;"><strong>EXAMS AND TESTS</strong></span><br /><strong><span style="font-family:Verdana;font-size:180%;color:#3333ff;"></span></strong><br /><br /><span style="font-family:verdana;font-size:130%;"><span style="color:#3333ff;"><em><a href="http://www.edward.org/AEImages/adam04/graphics/images/en/19178.jpg">Ultrasonography</a></em></span> (ultrasound or US) with Doppler indications, computed tomography (<span style="color:#3333ff;"><em><a href="http://www.toftemark.com/images/cancer/Hosp%20-%20CT%20Scan.jpg">CT scan</a></em></span>) with use of IV contrast indications of chest, abdomen and pelvis, magnetic resonance imaging (<span style="color:#3333ff;"><em><a href="http://www.lymphomainfo.net/images/mri.jpg">MRI</a></em></span>) and an venogram (<span style="color:#3333ff;"><a href="http://www.childrenshospital.org/az/Site580/mainpageS580P1.html">angiogram</a></span>) are used to diagnose an Abernethy malformation.<br /><br /><strong><em><a href="http://www.mayoclinic.com/health/liver-function-tests/MY00093/DSECTION=why-its-done"><span style="color:#cc0000;">Liver enzyme test</span></a></em></strong> - An initial step in detecting liver damage is a simple blood test to determine the presence of certain liver enzymes in the blood.<br /><br /><a href="http://www.webmd.com/digestive-disorders/ammonia"><span style="color:#cc0000;"><strong><em>Ammonia blood test</em></strong> </span></a>– a routine blood test that uses blood that is drawn out of a vein. Ammonia tests can also be performed on arterial blood, but this method is much less frequently used.<br /><br /><a href="http://www.health.harvard.edu/diagnostic-tests/oxygen-saturation-test.htm"><span style="color:#cc0000;"><strong><em>Oxygen saturation test</em></strong> </span></a>- An estimate of your oxygen saturation can be made easily and painlessly with a clip that fits on your finger.<br /><br />A better test for measuring your oxygen saturation is an arterial blood gas test. For this test, a small sample of blood must be drawn directly out of an artery. Most routine blood tests use blood that is drawn out of a vein, so this test is a little different.</span><br /><span style="font-family:Verdana;font-size:130%;"></span><br /><span style="font-family:Verdana;font-size:180%;color:#3333ff;"><strong>SYMPTOMS RESULTING FROM A SHUNT</strong></span><br /><span style="font-family:Verdana;font-size:130%;"></span><br /><a href="http://www.webmd.com/digestive-disorders/ammonia"><span style="font-family:Verdana;font-size:130%;">hyperammonemia</span> </a><br /><br /><a href="http://kidshealth.org/parent/medical/endocrine/failure_thrive.html"><span style="font-family:Verdana;font-size:130%;">failure to gain weight</span><br /><span style="font-family:Verdana;font-size:130%;"></span></a><br /><a href="http://www.mayoclinic.com/health/hypoglycemia/DS00198"><span style="font-family:Verdana;font-size:130%;">hypoglycemia</span><br /><span style="font-family:Verdana;font-size:130%;"></span></a><br /><span style="font-family:Verdana;font-size:130%;"><a href="http://www.mayoclinic.com/health/elevated-liver-enzymes/MY00508">elevated liver enzymes</a></span><br /><br /><span style="font-family:Verdana;font-size:130%;">seizure activity</span><br /><span style="font-family:Verdana;font-size:130%;"></span><br /><span style="font-family:Verdana;font-size:130%;"><a href="http://www.merriam-webster.com/medical/coagulopathy">coagulopathy</a></span><br /><br /><span style="font-family:Verdana;font-size:130%;"><a href="http://www.webanswers.com/health/general-health-care/what-is-a-liver-nodule-2639f9">regenerative liver nodules</a></span><br /><br /><span style="font-family:Verdana;font-size:130%;"></span>Unknownnoreply@blogger.comtag:blogger.com,1999:blog-4857069985311680749.post-89149762097073167572008-10-05T07:33:00.029-05:002012-05-12T07:52:20.323-05:00<span style="font-family: verdana;"><span style="color: #3333ff;"><span style="font-size: 180%;"><strong>TREATMENT OPTIONS</strong></span></span></span><br />(updated 5/12/2012)<br /><span style="font-size: 130%;"><span style="color: #3333ff;"><span style="color: black;"><span style="font-family: arial;">A test in radiology is performed to temporarily block the shunt to see if a portal vein is present and to monitor pressure as the shunt is closed. </span></span></span></span><span style="font-size: 130%;"><span style="color: #3333ff;"><span style="color: black;"><span style="font-family: arial;">If the portal vein is located, depending on the size and anatomy of the vein. It may be possible to permanately block or close the shunt and redirect flow through the portal vein. </span></span></span></span><span style="font-family: Arial; font-size: 130%;">If the results indicate a higher presssure then the doctor is comfortable with, then the process may be done in stages to slowly expand the portal vein. </span><span style="font-family: Arial; font-size: 130%;">A liver transplant may be another possible option that may be reviewed with your doctoor. </span><br />
<strong><span style="color: #3333ff; font-family: Verdana; font-size: 180%;">WHAT TO EXPECT BEFORE TREATMENT</span></strong><br /><span style="font-family: verdana;"><span style="font-size: 130%;"></span></span><br /><span style="font-family: verdana;"><span style="font-size: 130%;">The reaction of the liver to an uneven blood supply usually results in <span style="color: #993399;"><a href="http://en.wikipedia.org/wiki/Focal_nodular_hyperplasia">focal nodular hyperplasia</a></span>. This is monitored yearly by checking <span style="color: #993399;"><a href="http://en.wikipedia.org/wiki/Alpha-fetoprotein">alpha-fetoprotein levels</a></span> to check for <span style="color: #993399;"><a href="http://en.wikipedia.org/wiki/Liver_cancer">liver cancer</a> </span><span style="color: black;">and with a yearly CT scan.</span></span><br /><span style="font-size: 130%;"></span></span><br /><span style="font-family: verdana;"><span style="font-size: 130%;">Intelligence may be normal, but some may have a learning disability.</span></span><br />
<span style="font-family: verdana;"><span style="font-size: 130%;">L</span></span><span style="font-family: verdana;"><span style="font-size: 130%;">imiting protein intake is advised in some circumstances. </span></span><span style="font-family: verdana;"><span style="font-size: 130%;"></span></span><br />
<span style="font-family: verdana;"><span style="font-size: 130%;"><a href="http://www.mngastro.com/gi-system-amp-disorders/gi-system-amp-disorders/hepatic-encephalopathy-and-lactulos">Lactulose</a> or <a href="http://www.medscape.com/viewarticle/578716">Xifaxan</a> (Rifaximin) can be used if there are signs of hyperammonemia. </span></span><br />
<span style="color: #3333ff; font-size: 180%;"><strong>QUESTIONS I HAVE</strong></span><br />
<span style="color: #3333ff; font-size: 85%;"><strong>( My disclaimer because I know I should have one : </strong></span><span style="color: #3333ff; font-size: 85%;"><strong>I am NOT a medical person, </strong></span><span style="color: #3333ff; font-size: 85%;"><strong>I am just a mom with a blog.)</strong></span><br />
<span style="font-size: 130%;">Should the following be considered possible symptoms </span><span style="font-size: 130%;">of an Abernethy malformation: </span><br />
<ul>
<li><span style="font-size: 130%;">telangiectasias or hemangiomas</span></li>
<li><span style="font-size: 130%;">difficulty with fine motor skills</span></li>
<li><span style="font-size: 130%;">ADHD-related to attention and short term memory</span></li>
<li><span style="font-size: 130%;">low grade hepatic encephalopathy</span></li>
<li><span style="font-size: 130%;">Could <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001840/">HHT</a> be listed as a possible symptom? (A liver shunt is a large AVM. </span><span style="font-size: 130%;">When my child is hypoglycemic (low blood sugar) and has medical tests that require fasting, should she be on an IV of D5 (sugar solution) due to hyperammonemia?</span></li>
</ul>
<span style="font-size: 130%;">Should I filter my child's drinking water since my child's liver cannot? (Would a <a href="http://www.usatoday.com/news/nation/2008-03-10-drugs-tap-water_N.htm">reverse osmosis system</a> be beneficial?) </span><br />
<span style="font-size: 130%;">Is <a href="http://www.redbookmag.com/recipes-home/truth-about-organic-foods">organic food</a> safer than non-organic food?</span><br />
<br />
<strong><span style="color: #3333ff; font-size: x-large;">PEDIATRIC JOURNAL ARTICLE</span></strong><br />
<span style="color: black; font-size: x-large;"><a href="http://www.ncbi.nlm.nih.gov/pubmed/21292079">Management and classification of type II congenital portosystemic shunts</a></span>Unknownnoreply@blogger.com