It's not unusual to catch Gentrie Hansen hanging out in the family kitchen, but for seven months, just the thought of food was bad news for this 14-year-old. Her stomach couldn't digest anything, and doctors didn't know why. Her weight dropped from 112 to just 88 pounds.
"Everything they diagnosed me with wasn't right," she said.
After fighting with the unknown for 12 months, Gentrie was diagnosed with gastroparesis -- a rare disorder that affects the ability of the stomach to empty its contents -- essentially paralyzing it.
"They told me, 'Now, you really can't eat. Stop trying.' It was torture just because it's the realization that my stomach has stopped working," said Gentrie Hansen.
Gentrie was forced to receive all her nutrition through an IV tube. Family meals were especially hard.
"I would just go in my bedroom, and I would open my windows and stick my head out the window, so I couldn't smell the smells."
"At times, it really almost felt abusive when you're feeding yourself and your needs, taking care of everything you have, and yet your child is over there suffering and not having their basic needs," said Kathy Hansen.
Gentrie is not alone. When Kirstie gore was just starting ninth grade, she started having what felt like flu symptoms. Three years later, the same diagnosis.
"I was very confined to home because you didn't know when you were going to get sick, so you were very gun-shy of leaving," said Kirstie Gore.
Now, doctors at Nationwide Children's Hospital are turning to a pacemaker typically used in adults with heart problems to help patients like Gentrie and Kirstie eat again.
"We see that the muscles are actually perfectly fine and well developed. It's a question of do they get the appropriate nerve signal to contract and empty or whether there is enough strength in the muscle itself," said Jaya Punati, M.D., Assistant Professor of Pediatrics Nationwide Children's Hospital/Ohio State University.
The pacemaker is inserted into the abdomen with electrical wires leading to the stomach. It then sends electrical impulses at three contractions per minute to stimulate the stomach after eating -- shocking it back to normal.
"I think it has been lifesaving for a lot of children that we have placed it on."
Gentrie couldn't agree more. This is her taking her first sip after seven months without food.
"Food is my life. It's so amazing, and I can't imagine going without it ever again."
For more information on other series produced by Ivanhoe Broadcast News contact John Cherry at (407) 691-1500, email@example.com.
MEDICAL BREAKTHROUGHS - RESEARCH SUMMARY:
BACKGROUND: When broken down literally, gastroparesis means stomach paralysis ("gastro" = stomach and "paresis" = paralysis). It’s a condition in which the muscles in the wall of the stomach work poorly, if at all. As a result, food moves through the stomach slower than normal, and the stomach is unable to empty properly. Gastroparesis can interfere with digestion and typically results in chronic nausea, vomiting, bloating, and severe abdominal pain. Many patients require some type of feeding tube to ensure adequate nutrition. Gastroparesis affects 1.5 million people, and nearly 100,000 of them suffer a serious form of the condition. The disorder often affects quality of life by forcing people to carefully time out their meals and portions. Patients who experience nausea and vomiting may not know when these episodes will occur.
(Source: Mayo Clinic)
CAUSES & COMPLICATIONS: In some cases, there is no known cause of gastroparesis, but type 1 diabetes has been linked to the disorder. At least 20 percent of people with type 1 diabetes develop the disorder. It also occurs in people with type 2 diabetes, but not as often. Diabetic gastroparesis patients often have a difficult time controlling their glucose, and as a result, may see their diabetes worsen. Some patients also experience malnutrition and significant weight loss.
(Source: Temple University Hospital, Digestive Diseases Center)
TREATMENT: Gastroparesis can be managed through certain diets, but it cannot be cured. Drugs may not adequately control the symptoms, and standard medical therapy does not work for about 30,000 patients.
NEW HELP: Gentrie Hansen was only the seventh child in the United States to receive a new pacemaker procedure. In 2000, the FDA approved Medtronic’s stomach pacemaker called Enterra. The electrical device functions much the same way a pacemaker works in the heart, only it is implanted in the abdomen. It is surgically-implanted under the skin and is connected to two electrodes placed on the stomach wall. Electrical impulses stimulate the stomach after eating, telling the stomach when to empty. Just like a heart pacemaker, the settings can be changed as needed. The device is used to alleviate bloating, chronic nausea and vomiting when conventional drug therapies are not effective. Doctors at Nationwide Children's Hospital at Ohio State University said patients who received the pacemaker had nearly all of their symptoms resolved within two weeks. After the surgeries, patients are able to eat real food more frequently, in smaller amounts.
(SOURCE: Nationwide Children's Hospital and Ohio State University)
FOR MORE INFORMATION, PLEASE CONTACT:
Erin Pope, Marketing and PR
Nationwide Children's Hospital
Jaya Punati, Assistant Professor of Pediatrics at Nationwide Children's Hospital/Ohio State University discusses pediatric patients with gastroparesis, and how gastric electrical-stimulation with pacemakers are allowing them to lead normal lives.
What is gastroparesis?
Dr. Jaya Punati: It is a term used to describe a stomach that is weak or paralyzed. “Gastro” means stomach and “paresis” means weakness.
How can that affect people?
Dr. Jaya Punati: When there is slow motility or poor motility of the stomach, it makes it difficult to empty the stomach effectively, so the gastric contents don’t empty very well into the small intestines. This means that you don’t absorb nutrients. Moreover, if the stomach contents are not expelled out then you feel bloated and full all day, and you don’t have an appetite because there is no more room for food.
What are the dangers of continuing like this without getting immediate help?
Dr. Jaya Punati: Well, symptomatically you will have persistent nausea, you will have poor nutrition and will lose weight. Tiredness and fatigue follow. Other organ systems in your body also get affected especially, the immune system – this is all due to poor nutrition.
Are you born with this or is it something that you develop?
Dr. Jaya Punati: There are both conditions. The congenital form is rare, and make up approximately 1 percent of the population that has gastroparesis. Most of gastroparesis cases are acquired. The condition that is most commonly associated with gastroparesis is diabetes. Poorly maintained diabetic patients tend to develop gastroparesis quite often. In the pediatric age group, the diabetic gastroparesis is not as common as in adults. In pediatrics, the majority of gastroparesis is idiopathic (or post infectious gastroparesis). This means with any infection most of us have experienced a couple of days of ‘I don’t feel good . . . I don’t have an appetite . . . my stomach doesn’t feel good’ type of symptoms, but if they persist and don’t go away (if they persist for longer than 3 – 6 months) you get the diagnosis of gastroparesis.
Is there a particular pediatric age group that is more susceptible to gastroparesis?
Dr. Jaya Punati: It can occur in any age group but is more common in adolescents .
It seems that gastroparesis can have far more detrimental affects to younger children that those who acquire the disease later in life, is that correct?
Dr. Jaya Punati: Yes. The most important characteristic of a child is growth. During the pediatric age group, you are growing both in your height as well as your weight, your organ development in addition to your cognitive development – All growth is dependent on adequate nutrition. If a child has poor nutrition or is unable to get nutrition, it is going to affect the overall development of that child.
When these children come to you, do you usually know right away that their problems are the cause of gastroparesis?
Dr. Jaya Punati: Alas, no. There isn’t a single specific guaranteed test to diagnose gastroparesis. It is mostly a clinical diagnosis that we base on symptoms – typically patients present with persistent nausea, abdominal discomfort and vomiting (that occurs several hours after eating a meal). They typically complain about vomiting up food at dinnertime that they ate for breakfast, or vomiting up a meal that they ate several hours ago. The other problem with gastroparesis is that all of us have these symptoms after an infection. The question then becomes: How long do you wait for your body to get back to baseline (recover) before you decide that it needs help?
Before the pacemaker, how would you treat these kids?
Dr. Jaya Punati: Treatment is directed toward relief of symptoms of nausea or vomiting. Medications that help with improving motility may also be tried empirically .
Can you give a few examples please?
Dr. Jaya Punati: Specific medicines such as ondansetron (brand name: Zofran), promethazine (Phenergan), diphenhydramine (Benadryl), erythromycin help with nausea and or vomiting
So this is all just covering the symptoms and not treating the problem?
Dr. Jaya Punati: The erythromycin (brand name: E-Mycin, E.E.S., Ery-Tab, ect.) is a motility agent, so it improves gastric motility. There are a few others that have similar effects such as Reglan, Zelnorm and Cisapride. They are no longer available to us (mainly because of side effects).
In most cases of gastroparesis, is it the muscles that are at fault?
Dr. Jaya Punati: Basically, we see 2 kinds. The muscles are actually perfectly fine and well developed. It is a question of whether they get the appropriate nerve signal to contract and empty, or whether there isn’t strength in the muscle itself to generate an appropriate strength contraction. Either way, whether it is the muscle at fault or the nerve signal at fault, the end result is that there is not an appropriate contraction.
What exactly does this pacemaker do?
Dr. Jaya Punati: People don’t understand the exact mechanisms of how it helps the symptoms, but we do know that the pacemaker helps to provide electrical stimulation to the muscles at steady frequency. The pacemaker helps with the symptoms. They are able to eat food and keep it down. When we study the motility of the patient before and after the pacemaker, we may not see drastic changes.
How long would it take to see some changes?
Dr. Jaya Punati: It is pretty quick (within 24 – 48 hours) though it may not be a complete cure or 100 percent relief of symptoms. However, we do see significant improvement.
Can you discuss how exactly the pacemaker works?
Dr. Jaya Punati: Sure. I have an example of one here. This is the pacemaker – the device that has the electronic components. This is where the leads (or wires) go that are connected to the pacer maker, and the other end of the wire is inserted into the muscles of the stomach.
Where does this go?
Dr. Jaya Punati: The wires are placed in the abdomen with the tips ending in the muscles of the stomach wall.. Once the wires are implanted in the stomach wall, a pocket is created under the skin and the pacemaker is placed in it. So everything is actually under your skin. Patients able to feel the pacemaker device under the skin.
How long does the pacemaker stay in?
Dr. Jaya Punati: The battery for this particular pacemaker will last anywhere from 3 – 5 years based on the setting of electrical frequency The patients maybe able to tell if the battery is dying out. The effect (strength of the electronic discharge from the pacemaker) weakens and symptoms may recur.
How often do these electronic discharges occur?
Dr. Jaya Punati: The pacemaker is adjusted to stimulate the stomach nerves at a frequency that optimally improves the symptoms.
Do the children ever say if they can feel anything?
Dr. Jaya Punati: Some children do. It is not uncomfortable though. They can tell whether the pacemaker is working or not. If for some reason the wires become dislodged they may feel it .
How do they turn it off?
Dr. Jaya Punati: There is a special electronic device that works similar to a remote control that is used to turn on or turn off the device or to adjust settings Many times we have to turn off the pacemakers if they are going through electronic monitors (scanners at airports). They either have to turn it off or they have to bypass it. The remote control can only be used by a doctor and is not given to the patient.
Can the patient both turn on and off the pacemaker at will?
Dr. Jaya Punati: No. Only a qualified physician can adjust the settings of the device and turn it on or off.
When you turn it off, does the child relapse and become sick again?
Dr. Jaya Punati: Some patients with a gastric pacer seem to recover adequate function of the stomach after a few years and may not need the device any further. Others may have their symptoms recur and need the pacer turned on.
Does the pacemaker strengthen the muscles over time so that you don’t need to replace the battery once it dies?
Dr. Jaya Punati: As mentioned before, we do see that some children (within a year or two) no longer require the pacemaker. Others may need to have it replaced. We still don’t fully understand how the ‘reset’ in the stomach happens.
How many pacemakers have you implanted in patients for gastroparesis?
Dr. Jaya Punati: We have about 18 pediatric patients who have received a pacemaker at our center
What is the success rate for those children who were implanted with the electronic device?
Dr. Jaya Punati: At this point, I am going to have to say that there has been a 100 percent success rate for an improvement in the symptoms. We have had a few issues with placement and side effects, but as far as the vomiting and function of the stomach, almost all of them have had significant decrease of the symptoms.
What are some of the side effects of gastroparesis?
Dr. Jaya Punati: Well, since it is a surgery one of the major side effects would of course be the recovery aspect from the incisions (the aches and pains that follow from being cut open). Refered pain at other sites can also occur.
Are there any particular dangers that can come from having electric currents incessantly travel through your body?
Dr. Jaya Punati: It is an invasive surgery, however, we have not encountered any life threatening problems caused by the currents from the pacemaker. This is very similar to that of a heart pacemaker.
This is both a new thing for you as well as for science. How do you personally feel about it?
Dr. Jaya Punati: I think that it has been life saving for a lot of the children that we have used this on. Nevertheless, it is not prime time! This is not something that we advertise to every patient that walks through the doors. We still need to give due thought to the traditional medical therapies available, before considering a gastric pace maker. If a child has failed to sustain adequate nutrition and control of symptoms with traditional therapies a gastric pacer can be an option.