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Hyperinsulinism referrals

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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 the first 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. That means your child has access to the best care available. It is this level of treatment that has helped earn our program a distinguished international reputation for extraordinary care and achieving positive results.

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.

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Why choose Cook Children's Hyperinsulinism Center?

Cook Children’s offers one of only 2 full-service HI centers in the U.S. 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 the most recognized and respected HI specialists here and around the world.

Actively involved at the international level, Dr. Thornton and our specialty medical team work 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 delivering the most advanced treatments, and even cures, for infants, children, teens and young adults with this very rare disease. What that means to you and your child is access to tomorrow's treatments and cures, today.

The HI-ghest level of care

When your child is sick, you want the very best care available. Cook Children's is recognized for its advanced treatments and research and its commitment to quality and safety. In addition to being cared for by one of the world's most recognized hyperinsulinism teams, your child will be connected to an entire network of specialists and an award winning medical center.

Neonatal intensive care
Most symptoms of hyperinsulinism appear within the first few hours or days after a baby is born. Our Level IV NICU means that Cook Children's provides the highest possible level of care for the smallest preemies and most medically fragile newborns. Our NICU is divided into five pods, each with 20 single room suites so that you can stay with your baby in a quiet, restful setting that focuses on family-centered care. Newborns admitted with hyperinsulinism are cared for in our dedicated pod with 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 in a Level IV NICU with specialized treatments, surgeries and services available at only a handful of NICUs worldwide.

Children with rare insulinomas
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. 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.

Testing, diagnosis and advanced medicine
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.

What is hyperinsulinism?

In a healthy person a hormone called insulin controls the level of glucose (a type of sugar) in the blood. Insulin is made by the beta cells of the pancreas and released into the blood when the glucose level goes up, such as during eating. Insulin is released to keep glucose levels even and to help glucose enter the body's cells, where it can be used for energy or stored for future use. Once the blood glucose levels out, the pancreas stops producing insulin until it is needed again.

Congenital hyperinsulinism is a rare condition that interferes with the body’s ability to regulate insulin. The pancreas produces too much insulin. This may cause a medical condition called hypoglycemia, which means low blood sugar. Those with hyperinsulinism often develop an extremely serious form of hypoglycemia that prevents the brain from receiving three very important fuels:

Who gets it?

Only about one in 25,000 to 50,000 children are born with it each year. Hyperinsulinism is genetic, and there are many different types. Depending on the type of hyperinsulinism your child has, symptoms may be present at birth or may not appear until later. Some forms are temporary and go away on their own. Others may require surgery, and some will need treatment for a lifetime. Fortunately, most of the long-term forms become easier to treat as your child gets older.

Since opening our Congenital Hyperinsulinism Center in 2010, we've evaluated and treated more than 150 children with hypoglycemia, from unknown causes to recurrent hypoglycemia due to hyperinsulinism. We're the only specialized HI center in the south and one of only a few in the world.

The Hyperinsulinism Center at Cook Children’s is here for any child, from newborns to young adults, diagnosed with or suspected of having any form of hyperinsulinism. Families come to us from all across the U.S. and internationally because they know their child will receive the most advanced care available, in a family-friendly environment.

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.

Children who are newly diagnosed with hyperinsulinism are admitted to Cook Children's Medical Center to receive a comprehensive medical evaluation. Depending on the type of hyperinsulinism and the treatment plan, the initial admission is two weeks to three months.

Starting from day one, our team will help you fully understand your child's condition and teach you how to take of your child while you're here, so you'll have 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. If you've traveled a long distance to receive care, we'll work with your local endocrinologist both during and after your stay.

What we treat

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

What to expect before, during and after treatment

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

Step one
Prior to your arrival, your doctors will talk with our doctors and you'll be given step-by-step instructions for your arrival. If your child critically ill, a transport may be arranged by the medical staff to bring your baby to Cook Children's. In most cases, one parent will be able to ride along in the transport vehicle. Depending on your distance from our medical center, your child may be transported by ambulance, helicopter, plane or jet.

To help make your admittance to the medical center go as smoothly as possible, our insurance, finance and social services teams will work with you to pre-admit your child and secure the necessary insurance approvals.

In addition, our concierge will help you to arrange accommodations. There are many options available, including area hotels and Ronald McDonald House and we'll work with to try and match your financial situation.

Our goal is to ensure that your focus can remain on the one thing that matters most ... your child.

Step two
From the moment you arrive at our medical center we'll begin working with you so that you have the skills confidence necessary to care for your child. You'll meet with our HI team and we'll review your child’s medical records and discuss what has happened to you and your baby prior to your arrival. We'll confirm your child’s HI diagnosis and perform genetic tests to find the cause of your baby’s HI.

Because Cook Children’s is at the leading edge of clinical research in HI, we'll offer your baby the opportunity to participate in our research studies. This may include our 18F DOPA investigational drug study as well as database, genetic and neurological outcome studies. Participation in our research studies is completely voluntary. You'll receive the same medical care from Cook Children’s whether your child takes part in these studies or not. 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 HI 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.

Step three
Once a treatment program is established, we'll prepare you to go home. Preparation includes patient education, such as how to give your child his or her medication, proper use and cleaning of equipment and a written long-term care plan. Finally, before you're discharged from the medical center we'll allow you to care for your child with minimal help from our nursing team. This last step ensures that you understand all aspects of your child’s care and will be able to safely and comfortably care your child at home.

Of course, when you do go home, you'll still have continued support. Our nurse educators and board certified physicians are available 24 hours a day to support your child’s needs. You can call 682-885-7960 or email HICenter@cookchildrens.org if you have any questions or concerns.

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, 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, Dr. 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. DR. THORNTON'S 18FDOPA PAPER AND COPY GO HERE and HYPOGLYCEMIA GUIDELINES

18F DOPA/PET-CT

PET-scan18F DOPA/ PET-CT imaging is more than a breakthrough research study, it is a treatment that is saving lives and, in many cases, even curing some children. Cook Children's is the only facility in the south and the second in the country to use 18F DOPA--an investigational new drug--in combination with a PET-CT scan to diagnose focal lesions in children with congenital hyperinsulinism.

The 18F DOPA/PET-CT scan offers the fastest available testing, allowing your baby to go to surgery right away. Because the PET-CT scan provides a map to guide the surgeon to the focal point, the lesion can be targeted and removed with accuracy so precise, in most cases, your baby can be cured.

Thanks to this research study, the length of stay is shortened and the risk of diabetes is greatly reduced, and maybe even eliminated. This means that we can get more children home with fewer complications--making childhood what it should be, simple.

Our specialty care team

Thornton, Paul Stephen M.D. 

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

View physician biography

Heym, Kenneth M.D. 

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

Alles, Ajit J. M.D. 

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

     

Nedrelow, Jonathan H. M.D. 

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

Susan Hsieh M.D. 

Susan Hsieh M.D.
Endocrinologist
View physician biography

Thomas, Teena M.D 

Teena Thomas M.D.
Endocrinologist
View physician biography

     

Susan Hsieh M.D. 

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

Putegnat, Burton Barry III M.D. 

Burton Barry Putegnat
III M.D.

Radiologist
View physician biography

Uffman, John M.D 

John Uffman M.D.
Pediatric Surgeon
Medical Director, Cook Direct Connect

View physician biography

     

Acosta, Fernando Jr. M.D. 

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

Putegnat, Burton Barry III M.D. 

Putegnat, Burton Barry III M.D.
Radiologist
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 HI, 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 an HI 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.

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 possible. We're able to provide care for the smallest preemies and medically fragile newborn babies, as well as provide special treatments, surgeries and services available at only a handful of 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 NICU is currently the largest of its kind 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 who will need specialized medical attention, 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 have a dedicated NICU unit for babies with hyperinsulinism. The unit is equipped with the most advanced technology and a highly skilled medical team who specialize in hyperinsulinism, newborns and endocrinology.

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 is 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.

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.

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.

* Aircraft operated by Metro Aviation, Shreveport, Louisiana.

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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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