Helpful Websites: 

Children's Hospital of Philadelphia

http://www.chop.edu/service/congenital-hyperinsulinism-center/home.html?id=47690  

Cook Children's Medical Center

http://www.cookchildrens.org/

National Organization for Rare Disorders

(Our Organization is now listed on their website)

http://www.rarediseases.org/

Familial Hyperinsulinism (FHI) 

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene?=hi

Hyperinsulinism Videos

The following is a link to a series of nine videos on YouTube about hyperinsulinism produced by Children's Hospital of Philadelphia.

Unraveling the Mysteries of Hyperinsulinism

Or, the individual videos are as follows...

Introduction - Hyperinsulinism - The Children's Hospital of Philadelphia (1 of 9)

What We Know About Hyperinsulinism - The Children's Hospital of Philadelphia (2 of 9)

Treatment: Medical Management - Hyperinsulinism - The Children's Hospital of Philadelphia (3 of 9)

PET: A Breakthrough in Testing - Hyperinsulinism - The Children's Hospital of Philadelphia (4 of 9)

Treatment: Surgery - Hyperinsulinism - The Children's Hospital of Philadelphia (5 of 9)

Outcomes: Diffuse Disease - Hyperinsulinism - The Children's Hospital of Philadelphia (6 of 9)

Outcomes: Focal Disease - Hyperinsulinism - The Children's Hospital of Philadelphia (7 of 9)

A Comprehensive Center - Hyperinsulinism - The Children's Hospital of Philadelphia (8 of 9)

The Promise of the Future - Hyperinsulinism - The Children's Hospital of Philadelphia (9 of 9)

Ronald McDonald Houses:

Ronald McDonald House of Fort Worth

http://www.ftworthrmh.org/

Ronald McDonald House Charities of Austin and Central Texas

http://www.rmhc-austin.org/

Philadelphia Ronald McDonald House

http://www.philarmh.org/

Athena:

Athena Diagnostics - Find Test

http://www.athenadiagnostics.com/content/test-catalog/

Congenital Hyperinsulinism - Athena Diagnostics

http://www.athenadiagnostics.com/content/diagnostic-ed/endocrinology/hyperinsulinism

Disease reviews (Athena)

http://www.athenadiagnostics.com/servlet/DownloadServlet?id=306

Your Lab Data - The genetic basis of congenital hyperinsulinism

http://www.yourlabdata.com/index.php?option=com_content&task=view&id=48108&Itemid=75

SEQUENCE: Congenital Hyperinsulinism Genetic Testing, ABCC8, KCNJ11, and GLUD1 Hyperinsulinism

http://www.ambrygen.com/Clinical_Diagnostic_and_Carrier_Testing/test_Congenital_Hyperinsulinism.asp 

Social Security:

How to Apply for Social Security Benefits

http://usgovinfo.about.com/library/howto/htsocsec1.htm

Social Security Online - The Official Website of the U.S. Social Security Administration

http://www.ssa.gov/

School Plan:

Documents: the 504 Plan

http://specialneedseducation.suite101.com/article.cfm/504plan

Research & Articles:

Subtotal Pancreatectomy Remains Treatment Of Choice For Congenital Hyperinsulinism

http://www.docguide.com/news/content.nsf/news/8525697700573E1885256AB6005A9327?Open&id=48DDE4A73E09A969852568880078C249&count=10 

Persistent Hyperinsulinemic Hypoglycemia of Infancy: eMedicine Pediatrics: General Medicine

http://emedicine.medscape.com/article/923538-overview

Endocrinology: Understanding The Genetics Of Congenital Hyperinsulinism

http://www.sciencedaily.com/releases/2008/07/080701175547.htm

Congenital Hyperinsulinism : Background - Contact a Family Directory

http://www.cafamily.org.uk/medicalinformation/conditions/azlistings/c642_1.html?print=all 

Preoperative Evaluation of Infants with Focal or Diffuse Congenital Hyperinsulinism

http://jcem.endojournals.org/cgi/content/full/89/1/288

KATP channels and insulin secretion disorders

http://ajpendo.physiology.org/cgi/content/full/283/2/E207

Genetic and Nongenetic Forms of Hyperinsulinism in Neonates

http://neoreviews.aappublications.org/cgi/content/extract/5/9/e370

SUR1/YPL057C Summary

http://www.yeastgenome.org/cgi-bin/locus.fpl?locus=SUR1

KIP2 Expression in Normal Islet Cells and in Hyperinsulinism of Infancy

http://diabetes.diabetesjournals.org/cgi/content/full/50/12/2763

GDH HI - WrongDiagnosis.com

http://www.wrongdiagnosis.com/medical/gdh_hi.htm

Hyperinsulinism/Hypoglycemia (The 5-Minute Pediatric Consult)

http://www.wrongdiagnosis.com/h/hypoglycemia/book-diseases-20a.htm

Mechanism of action of a sulphonylurea receptor SUR1 mutation

http://hmg.oxfordjournals.org/cgi/content/abstract/16/16/2011

Sulfonylurea receptor

http://en.wikipedia.org/wiki/Sulfonylurea_receptor 

SpringerLink - Journal Article

http://www.springerlink.com/content/e5tx4ef50px54vb3/

The Human Pancreas: function of, diseases of, picture, shape, body location

http://www.mamashealth.com/organs/pancreas.asp

Molecular Genetics and Metabolism : Hyperinsulinism/hyperammonemia syndrome

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WNG-4BSVR12-1&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=03968b3cc1f1e84a701ba1b669b1abbd

Hyperinsulinism/Hyperammonemia Syndrome in Children

http://jcem.endojournals.org/cgi/content/full/86/4/1782?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=hyperinsulinism&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT

Hyperinsulinism–hyperammonaemia (HI/HA) syndrome

http://www.endocrine-abstracts.org/ea/0017/ea0017p39.htm

[18F]-DOPA Positron Emission Tomography for Preoperative Localization in Congenital Hyperinsulinism

http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowFulltext&ArtikelNr=137655&Ausgabe=239008&ProduktNr=224036

Characterization of Hyperinsulinism in Infancy Assessed with PET and 18F-Fluoro-L-DOPA

http://jnm.snmjournals.org/cgi/content/full/46/4/560

Noninvasive Diagnosis of Focal Hyperinsulinism of Infancy With [18F]-DOPA Positron Emission Tomography

http://diabetes.diabetesjournals.org/content/55/1/13.full

MD Consult - Congenital hyperinsulinism and the surgeon: lessons learned over 35 years.

http://www.mdconsult.com/das/citation/body/138985131-2/jorg=journal&source=MI&sp=10842004&sid=0/N/10842004/1.html?issn= 

Enzyme defect leads to hyperinsulinism

http://news.bio-medicine.org/biology-news-3/Enzyme-defect-leads-to-hyperinsulinism-6651-1/ 

Surgical outcomes in congenital hyperinsulinism of infancy (CHI) pre and post the introduction of diagnostic

http://www.endocrine-abstracts.org/ea/0017/ea0017OC16.htm

Paediatric Endocrinology

http://www.doh.gov.za/mts/reports/endocrinology.html

Nutrition and diagnosis-related care

http://books.google.com/books?id=wFzHkKEf0GwC&pg=RA1-PA522&lpg=RA1-PA522&dq=meds+children+take+for+congenital+hyperinsulinism&source=bl&ots=6lZfYlasVI&sig=WZlsxXmOgZ7zpz2qVEn-aS2rkSE&hl=en&ei=thcXSrDXEqiDlAf_v4XLCw&sa=X&oi=book_result&ct=result&resnum=2#PRA1-PA522,M1

Utility of [F-18] fluoroDOPA for Neonatal Hyperinsulinism

http://clinicaltrials.gov/ct2/show/NCT00674440

How a Mother Overcame a Malady

http://www.forward.com/articles/7938/

Child Development: 

Children's Special Needs Network

http://www.special-children.org/links.htm

Developmental Delays

http://learningdisabilities.about.com/od/glossar1/g/develdelay.htm

Developmental disability, early intervention, developmental delays

http://www.firstsigns.org/

Speech and Language:

Speech and Language Developmental Milestones [NIDCD Health Information]

http://www.nidcd.nih.gov/health/voice/speechandlanguage.asp

Speech and Language Milestones for Babies and Children

http://www.childrensdisabilities.info/speech/language-milestones.htm

Free speech therapy tips for children with speech, language delay

http://www.leomagan.com/

How to Teach a Child With Speech Delay

http://www.ehow.com/how_2069849_teach-child-speech-delay.html

Family-friendly supports for communicating with picture symbols and pecs

http://www.givinggreetings.com/

Diabetes:

Children with DIABETES Online Community

http://www.childrenwithdiabetes.com/

Bloodindex - Blood sugar converter
http://www.bloodindex.net/Blood_Sugar_Converter.php

Diabetes at School - For Parents & Kids - American Diabetes Association

http://www.diabetes.org/for-parents-and-kids/living-with-diabetes/diabetes-school.jsp

Children with DIABETES - Information for Teachers

http://www.childrenwithdiabetes.com/d_0q_200.htm

Carbs & Diabetic Menu:

Low-Carb Diet - Kids and Low-Carb Foods

http://pediatrics.about.com/od/obesity/a/708_lowcarbdiet.htm

High-Fiber Low-Carb Food List - Fiber Counts in Low-Carb Foods

http://lowcarbdiets.about.com/od/nutrition/a/fibercounts.htm

Counting carbohydrates - includes list of foods with carbohydrates 

http://findarticles.com/p/articles/mi_m0675/is_n1_v10/ai_11729520/

Carb Counting- Healthy Eating - American Diabetes Association

http://www.diabetes.org/for-parents-and-kids/diabetes-care/carb-count.jsp

Children with DIABETES - Readers' Favorite Recipes

http://www.childrenwithdiabetes.com/recipes/

Diabetic Menu Planning

http://www.your-diabetes.com/diabetic-menu.html

Complete Diabetic Menu

http://www.diabitieslife.com/diabetes/diabetes-diet/food/complete-diabetic-menu.htm

State Specific Assistance:

State Health Agencies(50 states)

http://www.fda.gov/oca/sthealth.htm

Health Coverage for All Children Campaign

http://www.childrensdefense.org/helping-americas-children/childrens-health/health-coverage-for-all-children-campaign/

AAP Children's Health Topics: CHILDREN WITH SPECIAL HEALTH CARE NEEDS

http://www.aap.org/healthtopics/specialneeds.cfm

Special Feeding Needs:

So Your Baby / Child Needs To Be Tube Fed

http://infantrefluxdisease.com/infant_acid_reflux/tube-feeding.php

How to Care for a G-Tube

http://www.ehow.com/how_2053455_care-gtube.html

Percutaneous Gastrostomy Tube Care, Cincinnati Children's Hospital Medical Center

http://www.cincinnatichildrens.org/health/info/abdomen/home/perculator.htm

Catheter Care:

How To Care For Your Foley Catheter Care Guide Information

http://www.drugs.com/cg/how-to-care-for-your-foley-catheter.html

How to Care For Your Catheter

http://alzheimers.about.com/od/caregivers/a/catheter_care.htm

Peripherally Inserted Central Catheter:

Pediatric Peripherally Inserted Central Catheter (PICC) Line Insertion

http://www.cpmc.org/learning/documents/piccline-ped-ws.html

Medical ID Tags:

Medic Alert Symbol : In My Jammies

http://www.cafepress.com/inmyjammies/3105766

MedicAlert® Watch

http://www.medicalert.org/Watch/

Medical Alert Bracelets

http://911medalert.com/?gclid=CI-zqfy-0poCFRJexwodkQMTFg

Sharps Compliance

http://www.sharpsinc.com/

Advice from a parent about corn starch...

(Always consult with your doctor before making any changes to your child's regiment.)

We give Collin a glass or two of whole milk mixed with 1-2 heaping tbsp of cornstarch per glass before bed.  To my knowledge, medical professionals are not exactly certain why the cornstarch works to stabilize blood sugar in kids with HI overnight.  I know that cornstarch is NOT to be used in diabetics or children under a certain age. The cornstarch looses effectiveness for helping to maintain blood sugar when heated or added to liquid with sugar.  Corn starch can also be added to the contents of feeding bags for children that are required to be fed by a gastrostomy feeding tube.  Be warned, that you should clean up or drink the stuff ASAP-- it can get messy!

D10 or D20 is used by IV when Collin gets sick (especially stomach flu) to keep his blood sugars safe.  We have to take him to his physician and/or the hospital for this to be administered.

Glucagon is used for emergencies when Collin's blood sugar drops dangerously low and he becomes unresponsive.

Jennifer

Words to Google:

Sur1 & Sur2

Diagnostic Algorithm

Differential Therapy

Pancreatic Imaging

Biochemical Background for Pancreatic Imaging

Correlation of Histology and 18F-DOPA-PET

Imaging of the Pancreatic Focus

Congenital Hyperinsulinism

To find out more about medication, visit the following link

http://www.chop.edu/consumer/jsp/division/generic.jsp?id=71065