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Why choose Cook Children’s for hyperinsulinism care

Our Hyperinsulinism Center is one of only seven designated Centers of Excellence in the world, and one of just two nationwide. This recognition highlights our deep commitment to multidisciplinary treatment and research that results in exceptional outcomes for your child. Hyperinsulinism (HI) is a rare genetic disorder where the pancreas produces too much insulin. This leads to persistent low blood sugar (hypoglycemia) which, if left untreated, can cause seizures and long-term brain damage. Our team of experts understands that getting timely, effective care is crucial for babies with hyperinsulinism.

What you can expect

When you choose our renowned center, your child will receive specialized, life-saving care from a team dedicated to their well-being and future.

When babies are diagnosed with hyperinsulinism, they need multiple experts to manage the condition. Our team includes specialists in Neonatology, Endocrinology, Genetics, Radiology, Psychology, Nutrition, Pediatric Surgery, Pathology, Neurology and Gastroenterology who work together to care for your child.

Our team is led by Dr. Paul Thornton, an international expert in hypoglycemia care. We are also training the next generation of world leaders to continue offering best-in-class treatment long-term.

Our team participates in clinical trials and research studies to offer your child the newest leading-edge approaches. We provide the latest medical treatments, life-changing surgeries and, in some cases, cures for focal hyperinsulinism.

  • Safety, Accuracy, and Feasibility of Continuous Glucose Monitoring In the Neonatal Intensive Care Unit

    Primary Investigator: Thornton MD, Paul Stephen

    IRB ID: CCHCS_CGM_Thornton (OPEN)

  • The Use of Fluorine F 18 6-fluorodopamine Positron Emission Tomography Combined with Computed Tomography in Congenital Hyperinsulinism and Insulinoma

    Primary Investigator: Thornton MD, Paul Stephen

    IRB ID: 2012-060 (OPEN)

We are the only facility in the region that uses 18F DOPA, an investigational drug, with positron emission tomography (PET)-CT imaging. If a patient is diagnosed with a focal lesion then this technique helps us delineate the location of the lesion which helps guide surgical intervention.

We provide comprehensive support and resources to ensure your child's care goes as smoothly as possible. Before your child goes home from the hospital, nurse educators work with you to make sure you know how to manage their ongoing care.

Your specialized care team

Our team includes specialists, researchers, case workers and more.

  • Lisa Truong, CPNP-PC, HI Co-Director
  • Alexus Graeber, Assistant Research Scientist
  • Ana Neblett, Registered Dietitian
  • Beverly Valenzuela, Social Worker
  • Brenda Sonnier, Child Life Specialist
  • Corrie Andrews, Clinical Therapist
  • Cris Hinojosa, MSW, Social Worker
  • Deborah Rafferty, Research Scientist
  • Hannah Kim, Registered Dietitian
  • Jamie Haswell, Investigational Pharmacist
  • Kaitlyn Miller, RN, HI Coordinator
  • Micha Koentz, Investigational Pharmacist Supervisor
  • Minali Patel, Endocrine Pharmacist
  • Raji Dhital, Associate Research Scientist
  • Ryan Murphy, Clinical Therapist
  • Teresa Bartnicki, LPC, Clinical Therapist
  • Tiffany Skrodzki, RN, Research Nurse
  • Neely, Sit, Stay and Play Dog Therapy

Advancing hyperinsulinism care

Our center is led by Paul Thornton, MBBCh, MRCPI. He's one of the most respected and recognized hyperinsulinism specialists worldwide. In 2012, he received an Endowed Chair to develop and manage the Hyperinsulinism Center while researching, publishing and presenting his work in the field.

Our doctors participate in clinical trials to continue finding and refining the best therapies for hyperinsulinism. Your child may have access to promising new treatments that aren't widely available.

We also collaborate on research with other leading children's hospitals, including Cincinnati Children's and Children's Hospital of Philadelphia. These joint projects enable us to continue advancing hyperinsulinism care so that children get the latest, most effective therapies.

Your baby receives comprehensive care from our team. Our services include:

Babies newly diagnosed with hyperinsulinism are admitted to Cook Children's Medical Center for a comprehensive evaluation. This process typically includes several steps:

  • Pre-admission and arrival: We may arrange transport to bring your baby to our center. To make your arrival as easy as possible, our insurance and social services teams work with you to pre-admit your child and secure necessary insurance approvals. Our goal is to ensure that your focus can remain on the most important thing: your child.
  • Specialty care: Our hyperinsulinism team reviews your child's medical records and meets with you to discuss their care. Most babies get additional genetic tests to confirm their diagnosis and find the cause. We create a treatment plan that may include participation in research studies, if you so choose. Most babies get initial treatment in our hospital for about two to six weeks.
  • Preparation to return home: Before your child is discharged, we discuss their long-term care with you. We educate you on how to give your child their medication and clean their medical equipment. Our nurse educators and doctors ensure you can safely and comfortably care for your child before returning home.

Our center is one of only three in the nation to offer this investigational therapy. We use a radio labeled dye called 18F-DOPA with a PET-CT scan to find the  areas of the pancreas that secrete too much insulin (focal lesions).

The PET-CT scan provides the surgeon with a map to remove focal lesions accurately and precisely. This approach reduces hospital stays, lowers diabetes risk and offers up to a 95% cure rate for focal hyperinsulinism.

Many children who leave our center no longer need specialty care and can continue seeing their hometown pediatrician. However, some children have ongoing blood sugar problems and need to see an endocrinologist.

Local families may continue their child’s care with our hyperinsulinism team. Our multispecialty outpatient clinic allows your child to see all the necessary specialists in one visit.

For families who live farther away, we work with local endocrinologists so your child can continue care close to home. Our experts advise and guide other endocrinologists on the complex aspects of hyperinsulinism management. This collaborative approach ensures that your child receives the advanced treatment they need.

Elizabeth Rosenfeld, MD, MSCE. Paul S. Thornton, MB, BCh, MRCPI, DCH. Hypoglycemia in neonates, infants, and children. Received August 22, 2023.
https://www.cookchildrens.org/siteassets/documents/specialties/endocrinology/hyperinsulinism/hypoglycemia-in-neonates.pdf

Paul S. Thornton 1,2 and Colin P. Hawkes 3,4,5. Approach to the Patient: Investigation of Pediatric Hypoglycemia in the Emergency Department—A Practical Algorithm. The Journal of Clinical Endocrinology & Metabolism, 2024, 00, 1–9.
https://doi.org/10.1210/clinem/dgae072

Paul S. Thornton 1, Diva D. De Leon 2, 3, Susann Empting 4, David Zangen 5, David M. Kendall 6, Sune Birch 6, Eva Bøge 6, Jelena Ivkovic 6, and Indraneel Banerjee 7. Dasiglucagon for the Treatment of Congenital Hyperinsulinism: A Randomized Phase 3 Trial in Infants and Children. The Journal of Clinical Endocrinology & Metabolism, 2023, 00, 1–9.
https://www.cookchildrens.org/siteassets/documents/specialties/endocrinology/hyperinsulinism/dasi-109-JCEM.pdf

Charles A. Stanley 1, 2, Paul S. Thornton 3, 4, and Diva D. De Leon 1,2. New approaches to screening and management of neonatal hypoglycemia based on improved understanding of the molecular mechanism of hypoglycemia. March 2023. DOI 10.3389/fped.2023.1071206. https://www.cookchildrens.org/siteassets/documents/specialties/endocrinology/hyperinsulinism/new-approaches-to-screening-and-management-of-neonatal-hypoglycemia.pdf

Preneet Cheema Brar 1, Ryan Heksch 2, Kristina Cossen 3, Diva D. De Leon 4, Manmohan K. Kamboj 5, Seth D. Marks 6, Bess A. Marshall 7, Ryan Miller 8, Laura Page 9, Takara Stanley 10, Deborah Mitchell 10, and Paul Thornton Management and Appropriate Use of Diazoxide in Infants and Children with Hyperinsulinism. The Journal of Clinical Endocrinology & Metabolism, 2020, Vol. 105, No. 12, 1–12 doi:10.1210/clinem/dgaa543
https://www.cookchildrens.org/siteassets/documents/specialties/endocrinology/hyperinsulinism/diazoxide-JCEM.pdf

Danielle Drachmann 1, Erica Hoffmann 1, Austin Carrigg 1, Beccie Davis‑Yates 1, 2, Valerie Weaver 1, Paul Thornton 3, David A. Weinstein 4, Jacob S. Petersen 5, Pratik Shah 6 and Henrik Thybo Christesen 7, 8. Towards enhanced understanding of idiopathic ketotic hypoglycemia: a literature review and introduction of the patient organization, Ketotic Hypoglycemia International. Drachmann et al. Orphanet J Rare Dis (2021) 16:173 https://www.cookchildrens.org/siteassets/documents/specialties/endocrinology/hyperinsulinism/enhanced-understanding-KHI.pdf

Garg PK, Putegnat B, Truong L, et al. Visual interpretation, not SUV ratios, is the ideal method to interpret 18F-DOPA PET scans to aid in the cure of patients with focal congenital hyperinsulinism. PLoS One. 2020;15(10):e0241243. Published 2020 Oct 27. DOI: 10.1371/journal.pone.0241243
https://pubmed.ncbi.nlm.nih.gov/33108363/

Kathryn White 1, Lisa Truong 2, Kimberly Aaron 3, Nasir Mushtaq 4, Paul S Thornton 2 The Incidence and Etiology of Previously Undiagnosed Hypoglycemic Disorders in the Emergency Department
PMID: 30365409
DOI: 10.1097/PEC.0000000000001634
https://pubmed.ncbi.nlm.nih.gov/30365409/

Paul Thornton 1, Lisa Truong 1, Courtney Reynolds 2 3, Tyler Hamby 4, Jonathan Nedrelow 5 Rate of Serious Adverse Events Associated with Diazoxide Treatment of Patients with Hyperinsulinism
PMID: 30889588
DOI: 10.1159/000497458
https://pubmed.ncbi.nlm.nih.gov/30889588/

Paul S Thornton 1, Charles A Stanley 2, Diva D De Leon 2, Deborah Harris 3, Morey W Haymond 4, Khalid Hussain 5, Lynne L Levitsky 6, Mohammad H Murad 7, Paul J Rozance 8, Rebecca A Simmons 9, Mark A Sperling 10, David A Weinstein 11, Neil H White 12, Joseph I Wolfsdorf 13, Pediatric Endocrine Society Recommendations from the Pediatric Endocrine Society for Evaluation and Management of Persistent Hypoglycemia in Neonates, Infants, and Children
PMID: 25957977
DOI: 10.1016/j.jpeds.2015.03.057
https://pubmed.ncbi.nlm.nih.gov/25957977/

Pradeep K Garg 1, Stephen J Lokitz 1, Lisa Truong 2, Burton Putegnat 2, Courtney Reynolds 2, Larry Rodriguez 2, Rachid Nazih 1, Jonathan Nedrelow 2, Miguel de la Guardia 2, John K Uffman 2, Sudha Garg 1, Paul S Thornton 2 Pancreatic uptake and radiation dosimetry of 6-[18F]fluoro-L-DOPA from PET imaging studies in infants with congenital hyperinsulinism
PMID: 29117181
PMCID: PMC5695579
DOI: 10.1371/journal.pone.0186340
https://pubmed.ncbi.nlm.nih.gov/29117181/

Kai Lee Yap 1 2, Amy E Knight Johnson 1, David Fischer 1, Priscilla Kandikatla 1, Jacea Deml 1, Viswateja Nelakuditi 1, Sara Halbach 1, George S Jeha 3, Lindsay C Burrage 4, Olaf Bodamer 5, Valeria C Benavides 6, Andrea M Lewis 4, Sian Ellard 7, Pratik Shah 8, Declan Cody 9, Alejandro Diaz 10, Aishwarya Devarajan 5, Lisa Truong 11, Siri Atma W Greeley 12, Diva D De Leon 13, Andrew C Edmondson 14, Soma Das 1, Paul Thornton 11, Darrel Waggoner 1, Daniela Del Gaudio 15 Correction: "Congenital hyperinsulinism as the presenting feature of Kabuki syndrome: clinical and molecular characterization of 10 affected individuals"
PMID: 30097611
DOI: 10.1038/s41436-018-0126-1
https://pubmed.ncbi.nlm.nih.gov/30097611/

Ann W McMahon 1, Gerold T Wharton 1, Paul Thornton 2, Diva D De Leon 3 Octreotide use and safety in infants with hyperinsulinism
PMID: 27910218
PMCID: PMC5286465
DOI: 10.1002/pds.4144
https://pubmed.ncbi.nlm.nih.gov/27910218/

Preneet Cheema Brar 1, Ryan Heksch 2, Kristina Cossen 3, Diva D De Leon 4, Manmohan K Kamboj 5, Seth D Marks 6, Bess A Marshall 7, Ryan Miller 8, Laura Page 9, Takara Stanley 10, Deborah Mitchell 10, Paul Thornton 11 Management and Appropriate Use of Diazoxide in Infants and Children with Hyperinsulinism
PMID: 32810255
DOI: 10.1210/clinem/dgaa543
https://pubmed.ncbi.nlm.nih.gov/32810255/

Ana Paola De Cosio 1, Paul Thornton 2 Current and Emerging Agents for the Treatment of Hypoglycemia in Patients with Congenital Hyperinsulinism
PMID: 31218604
DOI: 10.1007/s40272-019-00334-w
https://pubmed.ncbi.nlm.nih.gov/31218604/

Newborns with hyperinsulinism need specialized care in their first week of life. Our Level IV Neonatal Intensive Care Unit (NICU) provides the highest level of care for our smallest and most fragile patients.

Our NICU is organized into five units, each with 20 single-patient rooms. One of these units is dedicated to babies with hyperinsulinism. That means your child gets care from nurses with extensive training in the condition. Rest assured that your baby receives the most specialized, advanced treatment possible.

When your child needs transport to our hospital, you want to know they're in the hands of skilled professionals. Our Teddy Bear Transport team has experience caring for children with hyperinsulinism. Specialized nurses, paramedics and respiratory therapists begin caring for your child immediately and get them to us quickly and safely.

The exceptional care we provide here at Cook Children's has earned us international recognition among health professionals and families. Our Global Health Services program supports families traveling to us from around the country or world.

We believe the best outcomes start with strong collaboration among all of a child's care providers. When you refer a child to our team, we partner with you, keeping you involved every step of the way. Find out more about referring patients to our Hyperinsulinism Center.

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