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Hyperinsulinism referrals

Patient receiving checkupCook Children's

Hyperinsulinism Center

Learning that one of world’s most respected Hyperinsulinism Centers is right here at Cook Children’s, can be a life-saving moment.

Hyperinsulinism (HI) is a rare, and often severe, genetic disorder. It is the most common cause of hypoglycemia (low blood sugar) in infants more than 3 days old, as well as children. If not treated, these children are at risk for seizures or even permanent brain damage. Finding the right care is very important in preventing irreversible damage and improving quality of life.

One of only two such programs in the nation Cook Children's Hyperinsulinism Center uses a specialized team approach to treat this rare disease. Hyperinsulinism affects many areas of the body, so to truly treat the disease, each child is seen by top physicians, nurses, researchers and specialists in the field. These medical professionals have spent additional years of intense study and have dedicated their practice to focusing on hyperinsulinism so that your child will has access to the medical care that treats all the symptoms. It is this level of treatment that has helped earn our program a distinguished international reputation for extraordinary care and achieving positive results.

See for yourself how we are helping kids with even the most complicated cases of hyperinsulinism discover more of what childhood should be: simple. Learn about JC's journey here.

New Surgery Offers Hope for Babies Born With Rare DisorderIn the news
New Surgery Offers Hope for Babies Born With Rare Disorder

A new surgery at Cook Children's Medical Center is offering a cure for babies born with a rare disorder of the pancreas.

North Texas Hospital's New $6.5 Million Jet Is A Mobile ICUIn the news
North Texas Hospital's New $6.5 Million Jet Is A Mobile ICU

Child with hyperinsulinism rushed from Houston to Cook Children's Medical Center in Fort Worth for treatment.

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Choosing Cook Children's Hyperinsulinism Center

Cook Children’s offers one of only 2 full-service HI centers in the U.S., and the only one in the south. This is important because it means that the families who come to Cook Children’s can trust the expertise of our staff.

Dr. Paul Thornton Medical Director Cook Children's Hyperinsulinism Center"We go above and beyond by providing a huge amount of knowledge and support to families."
- Paul Thornton M.D.

Our center is led by Paul Thornton M.D., one of the founders of the nation’s first HI center and certainly one the most recognized and respected HI specialists here and around the world.

Actively involved at the international level, our specialty medical team works with other renowned physicians, researchers and specialists to continually improve the care and treatment of children with HI. The result is that our program is continually breaking new ground and bringing innovative treatments and even cures for infants, children, teens and young adults who are born with this very rare disease. What that means to you and your child is access to tomorrow's treatments and cures, today.

Breaking new ground

I beat cancer!A cure for Kylinn. A new surgery changed the future of one baby, and it's creating hope for many more born with a rare form of hyperinsulinism. See how.

A pioneer in the field of hypoglycemia and hyperinsulinism, Paul Thornton M.D. is once again leading the way into advanced research and new treatments.

Thanks to Dr. Thornton's guidance, the expertise of his team and the commitment of our leadership, the Cook Children's Hyperinsulinism Center offers state-of-the-art technology, the very latest in advanced medical treatments, life-changing surgeries, and even cures. We also provide the very best care available to patients and families facing this diagnosis.

And it's care that goes well beyond our walls. As an Endowed Chair, doctor Thornton continues to break new ground through research and teaching that benefits patients here at Cook Children's, across the nation and around the globe.

A HI-gher level of care

When you choose Cook Children's Hyperinsulinism Center, you can trust that your child will receive the most advanced – and compassionate – care possible. We do this through:

Most symptoms of hyperinsulinism appear within the first few hours or days after a baby is born. Having these fragile little patients cared for at Cook Children’s Neonatal Intensive Care Unit means access to the most current medical technology, a full team of physicians, nurses, and specialists who are recognized around the world for their specific expertise in hyperinsulinism. You also have the comfort of knowing that your baby is receiving award-winning treatment around the clock from an expert team who really care about your child.

Our all-private-room neonatal intensive care unit (NICU) offers superior medical technology, a highly experienced staff and care that extends beyond your baby … to your entire family.

First baby on Cook Children's Teddy JetHyperinsulinism patient launches the 'jet set' as the first baby to arrive on our super high-speed mobile ICU. Our Teddy Bear Transport team is able to begin treatment from the moment they arrive to pick up the patient, until the child is delivered to the medical center where top specialists are ready and waiting. See baby Rachel's news story now.

In addition to newborns, we are a referral center for older children with very rare (1 per million) insulinomas (insulin secreting tumors of the pancreas). In our highly advanced interventional radiology suite, tumors can be localized by performing pancreatic arterial calcium stimulation tests (very similar to differentiating focal from diffuse disease in infants years ago). So far, we are 100 percent accurate in localizing the tumors and removing them and we have cured the patients and eliminated the risk of diabetes.

Our HI Center includes testing and diagnosis, surgery and disease management through a combination of medication, diet and physical and occupational therapy. Because many of our young patients will need a lifetime of care for their hypoglycemia, we also provide ongoing training for parents, caregivers, including your child’s pediatrician and/or your family physician, and patients to help manage the disease through the many stages and changes in the child’s life.

Whether it’s intensive care for a baby who is hours old, preparing a child for surgery or providing ongoing support well into young adulthood, you can trust that when it comes to treatment at Cook Children’s, we have one focus: your child.

Advanced testing and diagnosis

PET-scanCook Children's is the the only facility in the south and the second in the country to use an investigational new drug, 18F DOPA, combined with a PET-CT scan to diagnose focal lesions in children with congenital hyperinsulinism.

Typically, the PET scan is performed on babies in whom surgery is indicated to prevent ongoing hypoglycemia. Results of the scan are available the next day, allowing the patient to go to surgery right away.

These children have a great advantage, too, because the PET-CT scan provides a map to guide the surgeon to the focal point for removal during surgery, in most cases curing the patient. Because of this procedure, the length of stay is shortened and the risk of diabetes is greatly reduced. Our goal is to help these children and allow them to go back home to live as normal and healthy lives as possible.

Who we treat

Since opening our hyperinsulinism center, we have consulted, evaluated and treated an extensive amount of children with hypoglycemia from unknown causes to recurrent hypoglycemia due to hyperinsulinism. We are the only specialized CHI center in the South and we know we can make a difference in your child’s life.

The Hyperinsulinism Center at Cook Children’s is open to any child, from newborns to young adults, who is suspected of having a form of hyperinsulinism or has been diagnosed with this disorder. We see patients from all across the south, southeast, southwest, west coast, and even from around the world.

Children who are newly diagnosed with hyperinsulinism are admitted to Cook Children's Medical Center to receive a comprehensive medical evaluation. The medical staff will work closely with your family and your child to understand the disease and teach you the skills necessary to manage the disease in your daily life. After leaving the medical center, routine follow-up care will continue on an outpatient basis. Depending on the type of hyperinsulinism and the treatment plan, the initial admission is two weeks to three months.

Nurses at Cook Children'sFrom quality care to normal childhood Cook Children's Hyperinsulinism Center is making a huge difference in the lives of the children and families we treat. From the birth of our program, our research and advanced treatment programs continue to grow, so do our patients, like Ty and Caroline. See Ty's and Caroline's story here and learn more about how Cook Children's is making a difference in the lives of HI patients and their families and caregivers every day through treatment, education and ongoing support.

When your child is first diagnosed, hospitalization may be necessary to evaluate and closely monitor his/her blood glucose levels. You will need to learn how to monitor and treat your child for hypoglycemia. Once your child goes home, frequent phone calls to the nurse/physician to report blood sugars may be needed. Appointments to see the endocrinologist may be every 1-4 months and later may be changed to every 6 months. Remember, you will also need to follow-up with your child’s primary care doctor for well childcare. If you have additional questions, contact your health care professional

What we treat

There are many genetic forms of CHI with more being discovered each year. Early identification and treatment of these genetic forms of CHI is critical to preventing serious complications in this children, such as brain damage. We treat all forms of this rare disease, including:

Neonatal intensive care at Cook Children's

When you choose one of the leading hyperinsulinism programs available today for your new baby, you expect a world-class health care center with advanced neonatal intensive care. That's exactly what you'll find here.

Cook Children's is a level IV NICU, which means we offer the highest level of NICU care in Tarrant County. We're able to provide care for the smallest preemies and medically fragile newborn babies, as well as provide special treatments, surgeries and services, any of which are available at only a handful of level III-C NICUs nationwide.

Our single room settings are part of our advanced care. Studies show that premature and critically ill infants who are cared for in a single room setting have better long-term outcomes. These tiny patients are shown to grow better, get more oxygen, and go home quicker. Cook Children's all single room NICU is currently the largest in the nation, and one of the few that can accommodate twins, triplets, and even quads in a single room. So even if you're expecting multiples, your babies won't be separated and you won't have to leave their sides.

Having a tiny new baby with a serious illness is complicated enough. Having the top specialists taking care of your baby in one of the nation's leading NICUs can help make things a little simpler. When it comes to caring for newborns with hyperinsulinism, Cook Children's NICU is a special place. We invite you to learn more about how our NICU helps to improve your baby's outcomes.

Teddy Bear Transport

Cook Children's is supported by one of the largest pediatric transport programs in the nation. More than 2,400 children are transported to Cook Children's Medical Center annually from Texas and its surrounding states, most for critical care. And with the addition of our Cessna Citation Encore+ jet, we can now transport patients farther and faster.

Our Teddy Bear Transport fleet also includes a King Air B200 critical care transport airplane*, an American Eurocopter 145 helicopter* and five ambulances. Each are equipped to transport critical care patients and feature pediatric-oriented technology. Our team of highly specialized nurses, respiratory therapists and paramedics begin giving care to your patient immediately upon our arrival to your location.

Cook Children's Teddy Bear Transport staff of neonatal/pediatric nurses, respiratory therapists and paramedics is proud to have more than 400 combined years of transport experience. This team is dedicated to getting the most medically fragile children and neonates to our Cook Children's award-winning medical center quickly and safely.

Our specialty care team

Thornton, Paul Stephen M.D. 

Thornton, Paul Stephen M.D.
Medical Director
Endocrine and Diabetes Program

View physician biography

Acosta, Fernando Jr. M.D. 

Acosta, Fernando Jr. M.D.
Neurologist
View physician biography

Alles, Ajit J. M.D. 

Alles, Ajit J. M.B.B.S., Ph.D.
Pathologist
View physician biography

     

Susan Hsieh M.D. 

Hsieh, Susan M.D.
Endocrinologist
View physician biography

Susan Hsieh M.D. 

Keng, Jane A. M.D.
Gastroenterologist
View physician biography

Heym, Kenneth M.D. 

Miller, James P. M.D.
Pediatric Surgeon
View physician biography

     

Nedrelow, Jonathan H. M.D. 

Nedrelow, Jonathan H. M.D.
Neonatologist
View physician biography

Putegnat, Burton Barry III M.D. 

Putegnat, Burton Barry III M.D.
Radiologist
View physician biography

Thomas, Teena M.D 

Thomas, Teena M.D.
Endocrinologist
View physician biography

     
Lisa Truong Lisa Truong, CPNP
Kim Cox Kim Cox, Clinical therapist
Ryan Murphy Ryan Murphy, MSW, Social worker

Our goal is to provide the most recent technology and best quality of care for babies and children with CHI, while providing support and information to their families. Central to this is our special team of doctors that include pediatric endocrinologists, surgeons, neurologists, neonatologists, gastroenterologists, pathologists and radiologists. We also have a CHI nurse, nutritionist, social worker, psychologist, Child Life specialists and feeding and speech therapists. When you bring your child to Cook Children’s, you’ll find much more than a medical team, you’ll find a family of people who care about the most important thing in the world, your child.

Preparing for your HI visit

If your child has been referred to Cook Children's Hyperinsulinism Center with a diagnosis or suspected diagnosis of hyperinsulinism, you are no doubt scared and nervous. Knowing what to expect when you arrive can help to make things easier.

It is often helpful if you write down a list of your child's symptoms, as well as a list of questions you may have. In addition, you may want to bring a family member or close friend who can take notes, parents often feel overwhelmed and find it difficult to remember parts of what is discussed. Some parents bring a recording device so that they can play back important conversations that take place during the visit.

You will start by meeting with our CHI team where we will review your child’s medical records and discuss what has happened to you and your baby prior to your arrival. We will confirm your child’s CHI diagnosis and perform genetic tests to find the cause of your baby’s CHI. Cook Children’s is at the leading edge of clinical research in CHI and we will offer your baby the opportunity to participate in our research studies that may include our database, genetic and neurological outcome studies. Participation in our research studies is completely voluntary. You will receive the same medical care from Cook Children’s no matter whether your child takes part in these studies. Our number one goal is to create a successful plan to get you and your baby home with a safe and manageable treatment program.

Your child’s length of stay at our medical center will vary from 14 to 60 days depending on the type of CHI he or she has, the severity of the condition and the need for surgical management. Throughout the diagnosis and treatment process, your child and family will receive support from our staff and our parent support group.

Once a treatment program is established, we will prepare you to go home and make sure you are comfortable with the program. Preparation includes patient education, how to give your child his/her medication and equipment and a long-term care plan. The final step will allow you to care for your child with minimal help from our nursing team. This ensures that you understand all aspects of your child’s care and will be able to safely treat your child at home.

Nurse educators and board certified physicians are available 24 hours a day to support your child’s needs. You can call 682-885-4000 or email HICenter@cookchildrens.org if you have any questions or concerns.

Educational information

Educational resources and information

Resources

Here you'll find resources and educational information to help you through your journey:

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Where to stay

Financial information

Conveniences at Cook Children's

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We are here to help.

If you have questions or concerns, we can help. To speak to a member of our HI team, please call our offices at 682-885-7960.

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