My Only Voice



REFLUX DIGEST

|Volume 7 Number 2 |June 2003 |

|ISSN 1088-4939 | |

PAGER Testifies before Congress

On May 13, PAGER was asked to testify before Congress on the need for the Centers for Disease Control and National Institutes of Health to work on pediatric GERD.

Oral Testimony

Hi. My name is Katie Anderson. We want to thank the Committee Members and Chairman for letting us testify and present our written testimony for the record.

Everybody in this room knows about acid reflux and gastroesophageal reflux disease or GERD in adults. But you might not know it’s really common in babies and even older kids. Scientists think a few million kids have it. Some of you might have a child or a grandchild with reflux.

I can tell you reflux is unbelievably painful. I cried all night and all day until I was three years old. I threw up dozens of times a day, and I almost died twice when the acid got in my lungs. My dad had to sleep in a chair with me all night to keep me from aspirating again. We moved to Washington to get better doctors, but I ended up so scared of doctors that I used to freak out at the sight of Band Aids. My Mom said that one day when I was 1 ½ years old, she needed a medical test, but I crawled up on her and tried to protect her from the mean doctors. Mrs. Burns and my Mom can tell you more.

Good Afternoon. My name is Jan Burns and I’m the Assistant director of Pediatric Adolescent Gastroesophageal Reflux Association, PAGER for short.

I am here today as the voice of all of the parents, grandparents, relatives and friends who call us. PAGER receives calls and e-mail from around the world and our website receives 50,000 hits per month.

I have two children with reflux, Jenna and Rebecca. Rebecca severe asthma and lung damage from her reflux. This is her overnight bag of medication and her feeding pump. She has had numerous surgeries and as many as 50 clinic visits and 75 prescription refills in a year. She is cared for by a team of 10 medical specialists. Rebecca has a Section 504 plan and nursing plan at school and she often receives home tutoring from the public school because she misses 20-30 days of school in a calendar year. On the days when she can attend school she has to take a snack and a lunch of special foods that she’s allowed to eat during class if she needs to.

Before Rebecca was born, I had successfully raised two other children and had a Masters degree in early intervention with 13 years of experience. But, even a medical degree couldn’t have prepared me for the sleep deprivation and the 24/7 Intensive Care Parenting required to care for such a critically ill child.

Many of the PAGER families have genetic reflux. Jessica’s three daughters and extended family all have reflux. Jessica and Rachel both have Barrett’s Esophagus which is growth of precancerous cells in the esophagus due to reflux. Jessica’s grandmother died of esophageal cancer. Rachel still has difficulty eating and at age 5 is very tiny. Their family has catastrophic medical bills coupled with lost wages. Parents who contact PAGER tell the same stories over and again. We need your help to find a cure.

Good Afternoon. My name is Beth Anderson. I’m the Founding Director of PAGER Association.

Acid reflux in kids is both more painful and more dangerous than it is for adults. The acid can melt tooth enamel, put holes in the esophageal lining, cause asthma, sinus infections, ear infections, pneumonia and it can even lead to Sudden Infant Death. One of our babies choked and died in his mother’s arms – looking into her eyes for help.

We have learned a lot about treating reflux; but knowing how to control some of the symptoms in some children does not mean we have a cure and it does not mean that we even understand the disease. PAGER initiated the

continued

Table of Contents

Testimony 1-5

Organizational news 6-8

Medical Formula Task Force 8

Eosinophilic Enteritis 8

Conferences 8-10

Books etc 11-12

Products 12

Journal articles 12-13

From Parents 13-17

Kids Reflux Digest 18-19

Disclaimer

This newsletter is by and for parents of children with gastroesophageal reflux and professionals involved in their care. The information presented does not necessarily reflect the views of PAGER and is for informational purposes only. Nothing contained in the newsletter should be considered medical advice. PAGER does not endorse any of the organizations, products or treatments mentioned.

PAGER Staff

Beth Anderson, Director

Jan Burns, Assistant Director, Volunteer Coordinator

and Special Populations Coordinator

Tracey Butler, Office Manager

PAGER Board

Beth Anderson, Germantown, MD

Dr. Leah Brasch, MD, Chevy Chase, MD.

Laura Barmy, Ijamsville, MD

Dr. Benny Kerzner, MD, Washington DC.

Joel Campbell, PhD, Gaithersburg, MD.

Jan Burns, M. Ed., Arnold, MD

Contact Information

Pediatric Adolescent Gastroesophageal Reflux Association, Inc. – PAGER

PO Box 1153

Germantown, MD 20875-1153

301-601-9541 parent message line

gergroup@



Please Donate or Join

PAGER is a 501(c) (3) non-profit organization. Donations are tax deductible. Thanks to you, PAGER continues to grow and provide support to the families who need us! Membership is $25.00 per year for individuals, $100 for a group of up to 8 professionals, $500 for Corporations or Universities.

Reflux Digest Copy Policy © PAGER Association. You may make single copies for friends, but not in lieu of membership.

first genetic study of GERD, and one thing we have already learned is that GERD may actually be four or five totally unrelated diseases. It’s like a reversal of the old elephant joke: Three blindfolded scientists are talking about “trees.” Unfortunately, one of them is examining a lamppost and one is touching an elephants’ leg.

Families dealing with pediatric GERD would like NIH to sponsor research into the underlying causes of GERD and dividing the disease into subtypes. We would also like NIH to establish Centers of Excellence for the Study and Treatment of pediatric GERD.

PAGER would like to work with NIH or the CDC to educate the public and to disseminate treatment guidelines to physicians. It is believed that about half the children suffering with GERD never get an accurate diagnosis.

Finally, PAGER would like the CDC to collect epidemiologic data on pediatric GERD. Small studies indicate that up to 8% of all children have GERD as do 50-80% of children with special needs

The stress on our family was pretty typical. When my daughter Katie was a baby, her care left me dangerously exhausted. We sent her poor three year old brother to daycare because I wasn’t even capable of carrying on a conversation with him. My breaking point came one day when Katie screamed all the way to the pharmacy, she screamed all the way home and then she spilled her medicine as I was opening it. I lost it. I walked out of the house, down the street and I gave by baby away to the first person I saw. I didn’t know the woman’s name and it didn’t matter. At that point anybody was a better mother than me. I came back an hour later and that wonderful woman became my best friend.

Thank you very much for listening and thank you for caring about our kids.

WRITTEN TESTIMONY

Testimony presented Tuesday May 13, 2003, to the Committee on Appropriations, Labor, Health and Human Services, Education and Related Agencies Subcommittee by Beth Anderson and Jan Burns

GERD in Adults

Most adults are familiar with heartburn and gastroesophageal reflux disease – known as GERD. GERD affects about 15 percent of adults in the United States or 42 million people. Thanks to a big public awareness campaign five years ago, most adults now know to see a doctor about their symptoms.

GERD in adults can be a mild annoyance but it can also lead to adenocarcinoma, which has become the fifth most prevalent cancer in the Western world and is increasing in frequency. This type of esophageal cancer has a very low survival rate. Many adults who end up in the emergency room for investigation of a possible heart attack are actually suffering from their first attack of GERD. When new drugs are developed for GERD, they automatically become “blockbusters” (annual sales over a billion dollars) because sufferers are always seeking a better level of relief. The most popular drug for GERD is the top selling medication of all time with sales of $2.3 billion in 1999.

GERD in adults can be a very expensive disease leading to many doctor visits, many lost work days and the use of very expensive medications. The burden of the disease for adults in the US is estimated at $9.3 billion in direct costs alone, double that of colon cancer.

GERD in Children – Epidemiology

Ten years ago, GERD in children was considered very rare. However, recent small studies show that 5 to 8 percent of otherwise healthy children have significant symptoms of GERD, but only a small fraction are receiving any treatment at all. These statistics may be low as most parents are unfamiliar with pediatric GERD and may not report the symptoms to the doctor. One pediatric gastroenterologist predicted ten years ago that forming PAGER was pointless as we would never find ten other families in the DC area. Not only is pediatric GERD now considered one of the most common childhood ailments, in the Washington, D.C. area it has become a household word. PAGER has thousands of members worldwide, and our web site receives 50,000 hits per month.

The rate at which pediatric GERD is being diagnosed has increased dramatically, yet pediatric gastroenterologists still suspect that a large proportion of children suffering from GERD are not properly diagnosed. They are still seeing far too many children who have extremely serious health problems due to GERD that was not recognized by pediatricians. Better awareness and earlier diagnosis should be reducing the number of hospitalizations, yet one recent study demonstrated a 20 fold increase in pediatric GERD hospitalizations between 1971 and 1995. Surgery to correct pediatric GERD is not always effective and is reserved for severe cases, yet it is the third most common surgery in children. There has also been a 600 percent increase in GI medications given to children in recent years. In addition, the incidence of asthma and allergies in children both appear to be on the rise. These diseases are very closely related to GERD with many unfortunate patients suffering from all three conditions. We do know that the actual incidence of GERD in adults has been rising dramatically in the past few decades.

The most vulnerable children are those who have chronic medical problems, developmental delays or neurological issues. These children are very likely to have GERD which greatly complicates their care. Small studies show that 50 to 80 percent of children with asthma, autism, Down Syndrome, and cardiac anomalies have reflux in addition to their primary diagnosis. GER is so common in premature infants that they are presumed to have it unless proven otherwise. Further understanding of the incidence in these vulnerable populations is needed.

Impact on children and families

Most babies with GERD suffer considerable pain and cry inconsolably most of their waking hours. Actually, new studies show many babies with “colic” really have GERD. With GERD, the inconsolable crying can last for months or even years – much longer than colic. Children with GERD don’t enjoy eating and some even cry and pull away during feeding. Older children may limit their intake to very bland foods or white foods and not eat enough to grow. Some parents resort to slipping a bottle into their baby’s mouth while the child is asleep. A few children even have to be tube fed because of severe food refusal or because they throw up so much of what they eat that it is compromising their health.

Crying, refusing food and vomiting are well documented as the top three triggers of unintentional child abuse or Shaken Baby Syndrome. PAGER works with child abuse prevention programs helping parents to calm difficult babies and reducing the likelihood of abuse. PAGER refers to caring for a child with GERD as “24-hour intensive care parenting,” with parents often stressed to the breaking point. Many of our members have been diagnosed with clinical depression, and some have even been diagnosed with sleep deprivation psychosis. Most of our members say that caring for a child with GERD is the most difficult thing they have ever dealt with, and many decide not to have additional children for fear of having another child with GERD.

GERD has a particularly distressing effect on the lives of children with special needs. Their GERD often has more impact on their quality of life than their primary diagnosis because it causes poor nutrition, sleep deprivation and pain. One of our teen members with autism was not able to tell his parents how awful he felt every day of his life. When his dentist noticed that his teeth were eroding away, he was put on GERD medication. His mother was shocked when several of his problem behaviors vanished. He no long refused food. He stopped gagging, retching and spitting up. No more drooling or moaning. He stopped waking up at night. He became less combative, and he stopped biting. His breath even smelled better, and his personality was more pleasant. His ability to learn and cope with the world improved dramatically. He still has autism, but his life is much closer to normal.

The burden on the families of children with GERD has never been officially studied. It is not unusual for our babies to visit the pediatrician weekly, and older kids may see as many as four specialists (gastroenterology, pulmonology, ENT, allergy, nutrition, occupational therapy, speech therapy, etc) and require repeated testing. One of the PAGER children averages 50 doctor visits and 75 medication refills per year. Many of our families experience financial hardship due to expenses beyond what is covered by medical insurance. One child has had five fundoplication operations in an attempt to alleviate his symptoms. Luckily, most children never require hospitalization or surgery. Babies and toddlers with GERD require an extraordinary level of care and with few exceptions their mothers are forced to quit work. Our teens have been known to miss as much as one day of school per week due to pain and nausea, and many are home-schooled for this reason. The full range of costs associated with pediatric GERD have not been studied, nor have the costs associated with lack of treatment.

Awareness

Every parent and every person who works with children needs to know about GERD just as urgently as they need to know about vaccinations and preventing Sudden Infant Death Syndrome. In order for children to receive a proper diagnosis, parents need to know that they should keep looking for answers if their child has stomach aches, is a picky eater, wakes frequently at night, coughs a lot or spits up frequently. Many children experience intermittent periods of time with symptoms, so doctors rely on parents to tell them when the problem is more than temporary or more than a nuisance for the child.

PAGER’s public education efforts in the Washington, D.C. area have resulted in most local parents having some working knowledge of pediatric GERD and knowing what symptoms to report to their pediatrician. Recently, PAGER has been working with Dr. Bill Sears (author of 31 parenting books) on a national awareness campaign to teach parents about pediatric GERD.

Medical Knowledge of Pediatric GERD

Medical understanding of pediatric GERD symptoms has begun to improve in recent years. We now know that the symptoms of GERD vary widely from patient to patient. Airway symptoms such as asthma, pneumonia, apnea and Apparent-Life-Threatening Events (“Near-Miss-SIDS”) are being taken much more seriously. No longer must a child be starving and suffering from multiple bouts of pneumonia before being tested for GERD.

Possible signs and symptoms in children include:

• Pain - irritability, constant or sudden crying, "colic," back arching, abdominal pain above the belly button, chest pain, heartburn or burning sensation in the esophagus. (Rare - pain migrating to the shoulder/shoulder blade)

• Vomiting - frequent spitting-up or vomiting, frequent wet burps/ wet hiccups/food coming part way up more than an hour after eating, spitting-up after six months of age. (Rare - nausea, projectile vomiting)

• Eating - extreme pickiness about foods or textures, food intolerances, refusing food, eating only a few bites despite hunger, eating only when sleepy, gagging, choking, poor weight gain, weight loss. (Rare - excessive weight gain from constant drinking.)

• Respiratory - bad breath, constantly runny nose, frequent sore throat, upper respiratory infections, sinus infections, bronchitis, croup, wheezing, asthma, nighttime cough, nagging dry cough, throat clearing, noisy or labored breathing/stridor, hoarse or deep voice, vocal cord nodules. (Rare - pneumonia, aspiration, apnea, Apparent-Life-Threatening-Events, laryngospasm)

• Miscellaneous - poor sleep habits/ frequent waking, esophagitis, frequent ear infections or congestion, excessive salivation/drooling, pain-based aggression or clinging, needing to be held upright, intolerant of pressure on the stomach. (Rare - vagus nerve seizures, esophageal ulcers, strictures, tooth enamel erosion, peculiar neck arching/ Sandifur's Syndrome, Barrett’s Esophagus)

Treatment

Treatment of GERD in children has also improved. In the 1960s, a mother was likely to receive a prescription for Valium so that she would quit complaining about her child’s crying and throwing up. Occasionally, the babies were sedated as well. Now children with GERD are being given the same medications as adults, and several manufacturers have successfully completed safety and efficacy testing in children.

It is widely believed that early recognition and treatment of GERD can improve a child’s long term health. Some people also believe that early and aggressive treatment can help the symptoms resolve earlier because GERD has a self perpetuating component: when acid reaches the esophagus, it burns the tissues, reducing the function of the sphincter at the base of the esophagus, which in turn lets more acid escape. Unfortunately, for many children with GERD, current medications are not effective, even when given in large doses.

Unfortunately, we have also learned that some medications for GERD can be dangerous for some patients. Propulsid was being given routinely to children with GERD before it was discovered that interactions with other medications or a genetic inability to clear the drug properly could lead to toxic blood levels of the drug. Several children died before we understood the scope of the problem. This drug was voluntarily withdrawn from the market by the manufacturer. We are also learning more about dystonia and dyskinesia which can be caused by certain GERD medications. These conditions are respectively a form of severe muscle spasm and a type of muscle twitching that can look like Tourette’s Syndrome.

But, knowing how to recognize the disease or control the symptoms is not the same thing as understanding the disease. We actually know very little about how the underlying causes of the disease. Five years ago, PAGER sought out a group of molecular geneticists at Allegheny General Hospital Center for Genomic Sciences in Pittsburgh who had a wonderful reputation for discovering disease genes. At the time, GERD was not considered a genetic disease. We have now proven that it can have a genetic basis (JAMA 7/17/00), and thanks to an NIH research grant, the team is well on their way to pinpointing the exact gene that causes GERD (Chromosome 13, q14). Finding a gene for GERD will enable us to see what goes wrong on a cellular level, and it should allow for the pharmacogenomic development of medications that address the root of the problem instead of only masking the symptoms.

Oddly enough, our gene hunt is showing that GERD may actually be several unrelated diseases that look so similar they have been lumped together. In some cases GERD is probably a food allergy or sensitivity. In babies it may be a neurological immaturity of the digestive system and brain. People with long ligaments may have reflux because the top of their stomach doesn’t stay shut firmly. The type of GERD our genetic team is tracking seems to be part of a syndrome that includes some strange neurological symptoms. GERD associated with aging may be a different disease altogether. In a reversal of the old joke, we feel like there are three blindfolded scientists talking to each other about the characteristics of “trees.” Unfortunately, one is actually examining a lamppost and one is touching an elephant’s leg, but they all think they are discussing the same thing.

There are many other basic questions that have yet to be answered about pediatric GERD. What happens to children with GERD as they get older? How many children get better and at what age? Do they continue to have it into adulthood? Does it wax and wane? Are our children at risk for esophageal cancer later in life? Does it affect boys more than girls? Are the hotspots in PAGER’s database indicative of an environmental influence? As with much of medicine, the more we learn, the more we questions we find.

Helping Improve the Lives of Children with GERD

PAGER has identified several key funding needs for research, treatment and education regarding pediatric GERD. First, and foremost, PAGER would request the National Institutes of Health sponsor research to determine whether GERD in adults and children is one disease or several, and to help illuminate the cause(s) of this common but poorly understood disease. This could be accomplished through the establishment of Centers of Excellence in the Treatment and Study of Pediatric GERD.

Second, PAGER would like the CDC to study the epidemiology, natural history and burden of pediatric GERD.

Finally, PAGER would like to partner with the CDC, Center for Newborn Screening and Birth Defects, to educate the public about the symptoms of pediatric GERD and partner with NIH or CDC to disseminate guidelines for the diagnosis and treatment of GERD to primary care physicians. Too frequently children must wait several years and see several doctors before the disease is properly recognized and treated.

On behalf of the millions of infants, children, teens and their families who suffer with GERD, thank you for your kind attention.

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Above: Beth and Katie Anderson, Jan, Rebecca and Jenna Burns. Below: Rachel and Jessica Penkert.

Photos by Bill Petros of Washington DC

Organizational News

Volunteer Update

All of our volunteers contribute so much to PAGER by answering phone calls and e-mails, educating local doctors, and contacting the local press. Thank you to all of our volunteers!

One of our new volunteers, Carla Williams just can’t be stopped. She answers phone calls for PAGER, monitors the discussion board while taking care of her son Gage who has a feeding tube and complex medical issues. She is juggling all of this while her husband is deployed overseas and still intends to start a support group in her community! Thank you Carla for your energy and enthusiasm!

Another volunteer, Jessica Penkert stepped up to the plate when we were asked to testify on Capital Hill with little advanced warning. She was willing to drop everything, rearrange her schedule and join us for the testimony. Jessica and her beautiful daughter Rachel joined the PAGER delegation and let us share her family’s struggles with genetic GERD.

If you would like to join Team PAGER, contact Jan Burns at jjanburns@. Volunteers are especially needed to run support groups in all locations. Training will be provided.

Support Groups

Don and Marianne Bates are getting all of our Northern Virginia members together on June 26 to organize a local support group. Please join us at the Burke Library from 7:00 to 9:00 p.m.. If you are interested in attending or would like more information, contact Don and Marianne Bates, Don.Bates@, 703-426-1768

Carla Williams is getting parents in Temple Texas together to share information and offer support. Contact Carla Williams, 254-791-1789, GJWTemple@.

Reaching out

PAGER Staff often teach classes on GERD and fussy babies to groups such as daycare providers or as guest lecturers for a series of parenting classes. We have recently submitted grant proposals to get this training on tape as the demands of running PAGER are making it harder to do these classes. If you are a trained PAGER volunteer and want to do these classes in your area, just call for an outline. We have also been working with PAGER members who want to have a display at a local health fair. We can send you all the materials and all you have to supply is an inexpensive display board from an office supply store and some photos of your child.

Going to School with Acid Reflux

Jan has finished the long awaited booklet on the issues faced by parents and kids when GERD last through the school years. Conicidentally, the day the final draft was done, we got an e-mail message from member Bonnie Brown. Her daughter’s teachers were having trouble understanding the situation and their gastroenterologist, Marc Tsou of Children’s Hospital of the Kings Daughters in Norfolk, had taken it upon himself to go out to the school and educate the teachers. If you need a copy for your teachers, send $5.00.

Staffing and Program Focus

This is part of a slide we use when we do presentations about PAGER and our focus areas. The full size slide normally includes over a dozen programs such as volunteer training, booklets, web site, etc that fulfill each of these overlapping circles. As you can see, there is a lot of work balanced on a small number of staff – only two full time equivalents.

Darren Retiring as PAGER’s spokesperson

Darren Bennett of the San Diego Chargers is no longer able to devote time to PAGER. His son is sick and he needs to start working with another non-profit organization that their family is involved with. Darren has been a big help with the walk/run. Thanks, Darren! We wish you and your family all the best.

PAGER Seeks Celebrity

Non-profit organizations have always hoped for a celebrity spokesperson on the belief that it helps raise awareness and improves funding. A recent study shows this is more important than we thought. An article in the New York Times in December described how even government funding for spinal cord injury and Parkinson’s disease have soared since Christopher Reeve and Michael J. Fox have been active in the causes. When we testified before Congress, half of the hearing time was devoted to Arnold Schwarzeneger and a group talking about funding for after school programs. The other eight groups testifying had to share the last hour.

Several successful non-profit groups and congressional staff have urged us to find a celebrity even if it means accosting one in an airport. One group started getting the local movie shooting schedules and having mothers take kids out to stalk a celebrity. It worked and their research program took off. This is a sad commentary on our system of research funding, but we have to face reality and do what we can to help our kids.

Please don’t hesitate to tell your story to a celebrity if you get a chance. Meanwhile, here is a cute picture of Mr. Schwarzeneger with Jenna Burns, Rebecca Burns and Rachel Penkert.

Event Assistance needed

PAGER is looking into hosting fundraising events in the Washington DC or Annapolis area. There are several possibilities under discussion ranging from a fancy evening event, to a lecture, to a daytime event for children. Do you know somebody who LOVES to plan parties? A gifted decorator? A caterer? A florist? A local company that would like to sponsor an event? A graphic designer? Somebody with a huge Rolodex of friends to invite? We have a couple of very fun ideas but need help making them a reality.

Food Lion-Lion Shop and Share

PAGER is now enrolled in the Food Lion Shop and Share Program. PAGER families, friends and neighbors who shop at Food Lion must register PAGER as the recipient of donations for purchased made at Food Lion. and have their MVP card scanned every time a purchase is made at Food Lion. Food Lion shoppers can register by calling 1-800-210-9569 or visit the website at: . You will need to provide your name, address, phone number and 12 digit MVP Card number. If you register on the Food Lion website, you will need to provide the state: Maryland, city: Germantown and name of organization: PAGER Association. Please offer to sign up your friends and neighbors for this wonderful program and you will be helping PAGER every time your shop. There is no cost for this program and you will receive discounts for your purchases by using the MVP card.

Many stores only donate to schools. Do you know of others who will donate to PAGER if we register?

Feedback

Thanks to all of you who filled out the satisfaction survey from the last newsletter. Your ideas are very valuable and we will keep them in mind as we continue to grow. The winner of the free book is Kim Torre Tasso.

Please don’t hesitate to send an e-mail or call if you have concerns or feedback beyond the survey.

Shopping for PAGER

Some of our new sponsors are donating a portion of their sales to PAGER. There are several new links to our sponsors on the links page of the web site.

Remember to shop by visiting the PAGER web site and clicking the link. You must putchase within 24 hours for PAGER to get credit. We are also a registered charity with . Use the link on our site or type:



Medical Formula Task Force

Quite a few PAGER members have children on hypo-allergenic formulas such as Neocate, Elecare and Vivonex which are available only by prescription. These medical formulas are complete nutrition and do not contain any proteins or peptides, they contain only vitamins, minerals and amino acids. Medical formulas may cost several hundred dollars per month. Private insurance does not always cover the cost. In 29 states, children with certain metabolic conditions may receive free formula, but a child with GERD or protein intolerance may not get this cost covered. WIC covers medical formulas, and in some states Medicaid will help. Unfortunately, there are very large gaps in the coverage.

PAGER has contacted other groups whose members use medical formulas and is establishing a national task force to work together to improve the situation. If you are a medical formula consumer, we would like to know more about your experiences.

Review of Eosinophilic Esophagitis

Alan M. Lake, MD

Pediatric Gastroenterologist, Lutherville, Maryland

Children with the symptoms of chronic gastroesophageal reflux disease (GERD) are usually assumed to have complications based on gastric acid entering the esophagus. Treatment thus focuses on reduction of acid production and techniques to improve gastric emptying and reduce reflux regurgitation. Over the past two decades, however, it has become clear that some children with persistent reflux issues have developed an inflammation of the esophagus that features invasion of the lining of the esophagus with an inflammatory cell called the eosinophil.. classically a feature of “allergic” inflammation.

The symptoms in children with “classic” GERD and those with “eosinophilic” GERD overlap greatly. Both have reflux regurgitation, intermittent emesis, abdominal pain, night waking, and discomfort with swallowing (dysphagia). Children with Eosinophilic Esophagitis (EE) are more likely to be male, often have a history of allergic symptoms involving the skin or respiratory system, and characteristically do not respond well to acid suppression with H2 blocking agents (e.g. Zantac or Pepcid) or proton pump inhibitors (e.g. Prevacid or

Nexium). In the infant and toddler, food refusal and weight loss are seen more commonly in EE than classic GERD. The children can present with the symptoms of EE from infancy through adolescence in to adulthood. The older children and adults often present with food sticking in the esophagus.

At present, the only way to diagnose EE is by esophageal biopsy done at the time of upper endoscopy. Some eosinophils may be seen in the lower part of the esophagus in any child with GERD, however, in children with EE, biopsies of both the middle and the lower esophagus will have more than 20 eosinophils in a single “field” when viewed through a microscope. When viewed through the endoscope, the esophagus may appear completely normal or it may have patches of white material coating the lining. Eosinophilic esophagitis must be considered in any child who fails to respond to acid suppression and must be eliminated as a possibility before a surgical procedure is done to tighten the lower esophagus (the Nissen operation). Children with EE do not improve after the Nissen operation. EE is especially common in infants with GERD who are breastfeeding and have eczema.

The treatment of eosinophilic GERD is best coordinated with a pediatric allergist. In some children, blood tests or skin tests will reveal an allergy to a single or small group of proteins in the diet. Elimination of these proteins from the diet produces symptomatic relief. Unfortunately, many of the children with EE will not have an easily identified food allergy. They can be treated with a highly restricted diet using feedings based on amino acids, or with oral medication to suppress the allergic inflammation using cortisone or prednisone. The treatment may need to be continued for years, though most patients do very well.

The “take home” message is that if your child has symptomatic GERD, but is not responding to treatment with acid suppression, discuss the possibility of eosinophilic esophagitis with your gastroenterologist and pediatrician. Your child does not need to have any other allergic symptoms such as eczema, hives, asthma, or puffy eyes, when eosinophilic esophagitis is present. Furthermore, children with “classic” GERD in early childhood can later develop “eosinophilic” GERD, even up to the age of college.

This Baby Blues comic is brought to you by Beth Anderson. Happy Father’s Day, Eric!

Conferences

Functional GI Disorders Medical Conference

The International Foundation for Functional GI Disorders (IFFGD) hosts a yearly conference about disorders such as Irritable Bowel Syndrome (IBS) which do not yet have an identified cause. This conference is interesting because there is more talk about alternative and complementary medicine, psychological impact, neurogastroenterology and semantics than at other medical conferences.

In the alternative and complementary medicine workshops, one of the resounding messages is that the popular authors pushing a mind/body/spirituality /nutrition angle are not crackpots. In fact, many have medical degrees from Harvard. The speaker urged the doctors to read these books and get ahead of the curve since medicine is going to be putting more emphasis on these ideas.

Another interesting lecture was about a world tour of medical practices in other countries. The researchers had an almost impossible time finding an herbal medicine practitioner in Cost Rica. They finally found an herbal doctor working at the local GNC in the mall. He questioned our methods of preparing herbal remedies. For example, he said that ginger is useful only if it is grown in certain conditions, is picked at the correct moon phase, and prepared in a very specific way.

Interestingly, the notion that healing is a function of the time the doctor spends talking to the patient did not hold true. The doctors in one country barely communicated with the patient.

The emphasis on the psychological aspects of gastrointestinal disorders is bitter sweet. On the one hand, it is nice to have discussions of quality of life and the impact of stress on the body, but it is also very disconcerting to realize that many doctors still think that a disease with a psychological component or stress trigger is a disease of the mind, not of the body. Sadly, many doctors are still dumping their difficult to treat patient onto psychiatrists.

The most promising work in gastroenterology revolves around understanding how neurotransmitters function in the GI tract and how to selectively manipulate them. The same 43 neurotransmitters in the brain are present in the gut, so if the neurotransmitters in the gut are out of whack, it isn’t surprising that the patient’s thinking and emotions may also be impacted. An inability to suppress physical pain signals may logically be correlated with a tendency to have strong emotions. For instance, patients with IBS are very prone to depression. It used to be thought that the depression caused the IBS. Now we are starting to understand they are both symptoms of neurotransmitter malfunction.

The semantics discussions were fascinating. “Functional” GI disorder means, that you can’t find any explanation for the symptoms or any actual damage. These conditions used to be called “idiopathic” which is Latin for “no cause,” or “psychosomatic” which inferred that the patient was making herself sick. The definitions of many GI diseases are shifting dramatically, especially the functional ones, hence the semantics discussion.

Most people probably think that gastroenterologists understand the basic causes of the diseases/disorders they deal with. Unfortunately, we have a long way to go before this will be true. One speaker cautioned the audience against letting patients think they understand IBS. He presented a case study of a woman who had been to numerous doctors and psychiatrists looking for a treatable cause for her symptoms. She had been through every test in the book; no cause could be found and no treatment could keep her out of the bathroom long enough to hold a job. She finally convinced the speaker to cut out a tiny section of her intestine with a laparoscope and look at all the layers under a microscope. Previous biopsies had shown nothing, but a high power magnification of the outer muscle layer slide showed eosinophilic disease (See Dr. Lake’s article in this issue). She is now working with an allergist.

Food Selectivity: Sensory integration and the Nutritional, Oral, Medical and Behavioral Influences on the Picky Eater.

Sponsored by: St Joseph’s Children’s Hospital, Center for Pediatric Feeding and Swallowing Disorders, Patterson, New Jersey. Several hundred professionals from 20 states attended. The conference was so popular, 150 applicants were turned away and the program will be repeated this fall.

The staff of the St. Joseph’s Feeding Clinic gave a presentation on the feeding program for children with a variety of feeding disorders. Picky eaters are characterized by one or more of the following: food /liquid refusal, food selectivity, oral pharyngeal dysfunction, failure to advance texture. It is believed that picky eating is more than a “normal phase.” When growth and nutrition are compromised and the problem persists over time, there are associated problems such as sleep disturbance, irritability, speech and cognition delay. Long term feeding issues may be associated with learning problems and social/emotional issues. Generally, food refusal and selectivity are both learned patterns. The main contributing factors are different. Medical and motor issues are related to food refusal and selectivity is mainly related to a learned pattern or habit. We all know the consequences of food selectivity: poor intake and poor nutrition, parental stress and poor health. There is also evidence that selectivity is accompanied by: acting out, fearfulness, toileting problems and refusal to comply with parental requests. Intervention may include repeated exposure to the same foods. It is estimated that the child will need to be exposed to a new food 10 or more times before accepting it. Other factors that may lead to an increase in variety of foods accepted include pairing intake with a feeling of abdominal comfort. Medical intervention may be necessary to decrease abdominal pain and reduce/eliminate reflux episodes. It is also important to pair a new food with an accepted food or with a positive event (reinforcement). A positive, relaxed social environment will go a long way toward ensuring that the child feels that it is “safe” to eat.

It was clear from the presentation that children with a feeding disorder often need a team of skilled therapists and doctors to develop and implement a feeding program. Many of the techniques need to be monitored by a doctor and the child may need ongoing medical support to monitor medication, weight and hydration. Food allergies need to be identified so that the child eats foods that will leave him/her feeling satisfied rather than in pain. The take home messages were to give a child with a feeding disorder a great deal of exposure to new foods. Before the food goes near his/her mouth, he/she needs to feel comfortable having a new food on the plate, then touch it and eventually bringing it to his/her mouth. The process for accepting new foods can take weeks or months, depending on the child and the program. If a child has complex medical, sensory and behavioral issues related to reflux, it is best to seek the assistance of a feeding team.

Kelly Dorfman, a nutritionist in private practice and staff member of Developmental Delay Registry gave an in-depth talk on nutritional issues. She believes there are 2 types of diet: biochemical (food, nutritional supplements) and neurological (touch, movement). She believes that picky eating is related to a combination of oral motor dysfunction, sensory integration and modality trouble and nutritional deficiencies, leading to poor digestive functioning. As a result, some kids have plenty of calories but little nutrition, leading to high calorie malnutrition. Others are in adrenal overload all of the time due to the stress of chronic illness, leading to depletion of vitamins and appetite suppression. Others are dealing with a sensory/vestibular system gone haywire. Examples include the child with chronic fluid in his/her ears. These children are disoriented by the sensation of stuffy ears and may experience poor appetite, lethargy, dizziness and nausea. A child with a hypoactive vestibular system may have poor muscle control, lethargy and crave spinning or movement. It is felt that constipation and reflux are common in this group. Children can have a combination of factors leading to poor intake and digestion.

Some suggests for improving intake, nutrition and digestion were suggested. A word of caution: It is advisable to consult your child’s physician before trying any of these suggestions on your own. Kelly Dorfman suggests finding an alternative/complementary practitioner with experience with pediatrics for consultation.

1. Vitamin deficiencies: Vitamin B1 and Zinc deficiency may lead to loss of appetite and malnutrition. A restricted diet may be deficient in calcium. It is felt that supplements (such as a good quality multivitamin) may close the gap created by picky eating and may replace nutrients missing from a restricted diet. In addition, it is felt that kids with chronic illnesses such as GERD have a higher need for nutrients due to the stress on the immune system. Nutrients may also increase the availability of raw materials for neurological development.

2. Gluten/diary free diet. Again, consult with your physician before trying a special diet. This diet may help children with frequent ear and sinus infections, asthma, and chronic diarrhea.

3. Digestive Enhancement: Digestive enzymes may help a variety of digestive symptoms including: bloating, fullness and poor appetite. The speaker felt that children with irritability who crave carbohydrates might have yeast overgrowth.

Resources:

Developmental Delay Resources:

St Joseph’s Children’s Hospital, Center for pediatric Feeding and Swallowing Disorders, Patterson, New Jersey, 973-754-4300,

Miscellaneous News You Can Use

Are you having trouble with a slow appeal process at your insurance carrier? Are you being denied a treatment or device that you need? Do you need assistance with a preauthorization hassle? Are you having trouble with an application for Social Security Disability, Medicare or Medicaid? The Patient Advocate Foundation serves as a liaison between patients and their insurer, employer or creditors. Case managers and attorneys can help you resolve many different types of problems. They are able to take calls in 150 languages through certified medical interpreters. PAF can be reached at 800-532-5274 or .

The North American Society of Pediatric Gastro-enterology, Hepatology and Nutrition (NASPGHN) has released a Clinical Practice Guideline Summary which is a shorter version of their 31 page Guidelines for Evaluation and Treatment of GERD in Infants and Children. The new document is only eight pages and is probably sufficient for most doctors, but the medical terminology will make it tough for most parents. It is now available through and is available in Pocket PC and Palm formats.

NASPGHN has just developed a cute new reflux site and cartoon The classroom discussion between Professor Gusty and his student, Gerdie, is funny and pretty sophisticated.

Dr. Sears has two interesting smoothie recipes on his web site. He has a very strong interest in nutrition that was cultivated when he experienced a serious illness. He developed the smoothie specifically for people whose stomachs aren’t very interested in breakfast. He finds a smoothie particularly helpful for kids whose stomachs empty slowly. Sip it all morning.

Mercy Medical Airlift and Angel Flight offer travel assistance for specialized medical treatment, evaluation or diagnosis away from home. 800-296-1217

Books and Other Reading

The Milk-Soy Protein Intolerance (MSPI) Guidebook/Cookbook by Tamara Field

When her 7 week–old-son was diagnosed with MSPI, Tamara Field was advised to stop breastfeeding her son and switch to a special formula. Following her doctor’s suggestion, she gave up breastfeeding but became determined that if she were to have any more children, she would try the MSPI diet herself in order to be able to breastfeed again. When she became pregnant with her second son, she started the diet. As she states in the introduction, she was determined that she would not “lack for good things to eat” and she “would find chocolate that was acceptable on this diet.” Over time, she found many acceptable alternatives for common diary/soy containing foods and created a broad range of recipes for this guidebook. “The goal of this book is to be of assistance to the woman who is handed a list of ingredients and told ‘stay on this diet and you can keep breastfeeding’ or ‘simply avoid all milk and soy products’.” As she learned very quickly, “the word simply does not apply here.” The first rule of the MSPI diet is to read labels very carefully. In the first section of this book, she lists ingredients to avoid (milk products and common constituents of milk used in many processed foods, as well as soy products), and provides a lengthy list of food substitutions for milk and soy ingredients. She also provides many manufacturer and product listings for these alternatives as well as contact information (by mail, phone, and email). The second section is a cookbook which contains recipes for beverages, appetizers, salads, soups, main courses, including meatless dishes, side dishes, and a section with breads and muffins, brunch dishes, and best of all, cookies, cakes and “comfort foods”.

Eat Right 4 Your Type by Dr. Peter J. D’Adamo with Catherine Whitney

Dr. James D’Adamo is a naturopathic physician who has been investigating the link between blood type and diet since the late 1950’s. He did his early research in Europe at several spas. He noticed that “although many patients did well on strict vegetarian and low-fat diets, which are the hallmarks of ‘spa cuisine’, a certain number of patients did not appear to improve, and some did poorly or even worsened.” He decided that “since blood was the fundamental source of nourishment to the body, perhaps some aspect of the blood could help identify these differences.” By correlating blood-type with diet he began to notice certain patterns. For instance, Type A patients do poorly on high-protein diets which contain a lot of meat, but do well with vegetable proteins like soy and tofu. Type Os however, do best on a high protein diet containing meat. His son, Peter D’Adamo (also a naturopathic physician) has continued his father’s research and summarized his findings in this book. His basic finding is that blood type is a more reliable measure of a person’s identity than race, culture, or geography because blood types developed during different phases of human evolution; Type O evolved from hunter-gatherer societies, Type A evolved with agrarian society, Type B appeared as humans migrated into colder, northern regions, and Type AB evolved more recently from the intermingling of different groups. The human diet changed over time and the blood-types reflect these differences. The book includes a diet plan for each blood type including beneficial foods, neutral foods, and foods to avoid in each category: meats and poultry, seafood, dairy and eggs, oils and fats, nuts and seeds, beans and legumes, cereals, breads and muffins, grains and pasta, vegetables, fruits, and beverages/condiments. Each section contains a sample daily meal plan, recipes, and a stress profile for each type, with exercise guidelines.

The Happiest Baby on the Block by Harvey Karp, MD

This book deals with fussiness from the baby’s perspective. Dr. Harvey Karp cites evidence that the womb is a very noisy, sloshy place and that babies miss this environment when they are born. His humorous book with adorable cartoons describes fairly simple techniques to replicate the sound and feel of the pregnancy for your baby.

Dr. Karp calls the first three months of a baby’s life, the fourth trimester. He says we need to stop acting as if human babies are fully developed at birth. They are not like horses; they can barely eat, let alone run. He suggests we act more like kangaroo mothers and humans from other cultures who raise independent children by keeping them close 24 hours a day during the first months.

The techniques from The Happiest Baby on the Block are also on video or DVD and must be seen to be believed. The babies on the video have sometimes been crying for hours before Dr. Karp demonstrates his techniques for their amazed parents. The babies calm so quickly they appear to have been shut off with a switch. Dr. Karp admits that the techniques probably won’t fully calm a baby with reflux, but they help a lot.

The book may be ordered directly from Dr. Karp. If you use code happy01 you will receive a discount and PAGER will receive a donation if you purchase a video.

Listening for Zebras by Marian Sandmaier

The Washington Post had a wonderful article June 3rd written by a professional writer who became convinced her daughter’s symptoms were serious. She brilliantly describes the emotions of having to do your own medical detective work and the lengths to which a mother will go to protect her child.

Consumer Reports on Heartburn/Antacids

The September 2002 issue of Consumer Reports had a very good article on heartburn. They presented an overview of the condition, a table showing how to distinguish the symptoms of GER from an ulcer or a heart attack, rated 16 antacids, and provided a table listing the cost and other data on prescription medications for GERD.

Products of Interest

Many children with reflux also have trouble digesting particular foods. Some are more prone to intestinal gas which can be very embarrassing. There is a new product on the market that can be worn in the underwear to absorb odors. These activated charcoal pads are made by FLAT-D Innovations and are available in disposable or washable models. 866-354-0056 or flat-

Want a second opinion for only $13.00? Your Diagnosis is a web site that will ask you many questions and then give you several possible diagnoses. Interestingly, you don’t pay until after you have answered all the questions.

Medical News of Interest

The March/April edition (vol. 22, no. 2, p. 53-57) of Neonatal Network reviews the effectiveness of three popular H2 blockers: Tagamet (Cimetidine), Pepcid (Famotidine), and Zantac (Ranitidine) in newborns and infants. The article lists dosages, administration

techniques, contraindications, potential adverse effects, as well as nursing implications. Continuing Education Credit is available. Please see page 49 for further details.

A recent study in Pharmacotherapy (23:4 p. 460-471, 2003), “Pharmacogenetics of the Proton Pump Inhibitors: a Systematic Review” examines differences in the metabolism of PPIs due to genetic polymorphism of the liver enzyme CYP2C19. This article is summarized at: .

According to an article reviewed in Medscape Medical News, “Baclofen acutely reduces symptoms and episodes of gastroesophageal reflux disease (GERD) and raises gastric pH, according to the results of a study published in the April issue of Gut.” Baclofen is most commonly used as a muscle relaxant in cases of multiple sclerosis or spinal cord injuries. CME credit is available. A summary of this article can be found at: .

An article in Pediatrics (vol. 110, no. 5, Nov. 2002) “Gastroesophageal Reflux and Cow Milk Allergy: Is There a Link?” finds that “in a high proportion of cases, GER is not only CMA (cow milk allergy) associated but also CMA induced” For a summary, see

On Medscape’s “Ask the Expert” someone asks if it is “possible to have significant acid reflux and be asymptomatic?” Dr. Chey responds that “there is some indirect evidence to address this question. It has been suggested that approximately 25% of patients with Barrett’s esophagus on upper endoscopy will have no history of reflux-related complaints…It is also important to realize that patients with extraesophageal manifestations (cough, hoarseness, asthma) of GERD often present without the classic reflux-related symptoms of heartburn and regurgitation” .

An article in Chest (vol. 123, no. 4, April 2003) “Role of Gastroesophageal Reflux in Older Children with Persistent Asthma” researchers found a significant reduction in the use of bronchodilators and inhaled corticosteroids after treatment for GERD. Summarized at

A recent study in Gastroenterology 5(1), 2003, “Should GERD Therapy Be Stepped Up, Stepped Down, or Not Stepped at All?” finds that esophagitis healed in 78% of PPI treated patients, 50% of H2RA treated patients, and 24% of placebo treated patients, suggesting PPI treatment eliminates symptoms and treats esophagitis more effectively than other treatments. Summarized on Medscape at

Fermentation of undigested carbohydrates in the colon may lead to GERD, according to an article in Gastroenterology (vol. 124, no. 4, April 2003). Approximately 2-20% of carbohydrates are not properly digested in the small intestine. These undigested food residues are metabolized into short-chain fatty acids and hydrogen by microorganisms in the intestine. Exposure of the proximal colon to these metabolites can cause relaxation of the lower esophageal sphincter and reduce gastric motility. Avoiding foods that cause gas may help reduce GERD.

Infants with regurgitation (vomiting) related to GER, without other medical complications were alternately given formula mixed with a thickening agent and regular formula. Reflux episodes and regurgitation were monitored using a pH probe. The frequency and amount of regurgitation were significantly lower when the infants were given formula with a thickening agent. There was also a reduction in the severity of reflux episodes. While thickening formula did not reduce the number of reflux episodes, it did significantly reduce the amount of regurgitation or vomiting. Effects of Thickening Feeding on Gastroesophageal Reflux in Infants: A Placebo-Controlled Crossover Study Using Intraluminal Impedance. Wenzl, TG, et. al.Pediatrics 2003 April;111(4 Pt 1):e355-9

Parent Observations and Lessons from the Trenches

A parent recently called PAGER with a story about how long it took to get her two children diagnosed with GERD. Her baby was suffering from obvious GERD symptoms but the mother had to fight tooth and nail for five months to get a diagnosis. At one year, he finally has a diagnosis and a referral to a surgeon because it has gone untreated so long. The same day, her older son with chronic sinus infections and no other symptoms was diagnosed with GERD by an allergist – in five minutes.

[pic]My daughter Kaley was born in October of 2002. She was a healthy, beautiful, 8 lb., full-term baby without any complications during pregnancy or delivery. My husband and I were beside ourselves with happiness and joy (and continue to be)! The first evening after having Kaley, the nurse took her for routine checks and returned her explaining to my husband and I that Kaley should sleep on her side and elevated because she may have amniotic fluid left in her lungs. They called her a “spitty” baby. We took her home after spending the usual 2 days in the hospital post delivery. At home I nursed her every two to three hours. Nursing was very difficult because Kaley would begin to eat and within a few seconds of feeding she would pull back and scream. Then she would want to nurse again, then pull back and scream. This occurred constantly during all of her feeding sessions. I noticed that once she would eat, she would experience a heavy spit up, throw up or projectile vomit across the room. Her pediatrician said that she had “a little bit of reflux”, but that reflux is a common condition in babies. He also thought to recommend an Upper GI test but thought that the reflux was not that severe because Kaley was gaining weight and thriving.

Around one month of age, Kaley began to stop breathing (what we now know was really choking) in her sleep. About 1-1 ½ hours after eating (she would usually be sleeping as newborns do) she would suddenly arch her back, throw her little arms in the air and stop breathing. This occurred maybe once a week, then every other day and then daily. When she would go into these ‘fits’ we would frantically try to pat her on the back, as if we were burping her, and she would begin breathing again. When I spoke to her pediatrician (actually a different pediatrician in the same practice) about this occurrence, I was told that babies with reflux sometimes do this and it is called Sandifer’s Syndrome. Again I was told that she has a “little bit of reflux” and she would grow out of it by the time she was 1 year old.

One afternoon, I was holding Kaley upright after feeding (she was sleeping on my shoulder) and she arched her back and stopped breathing. Regardless of the pats on the back and trying to suction her mouth with a bulb syringe she would not begin breathing. Luckily, my mother was in town and took Kaley from me while I hysterically called 911. While calling 911, my Mom began pulling on Kaley’s tongue that had seemed to fall back into her airway. By this time Kaley was turning blue. Shortly before the ambulance arrived, Kaley began breathing on her own. At this point, we were terrified, exhausted and frustrated and I had enough of being told that Kaley had “a little bit of reflux”. We took her to the ER where I demanded that she and I stay in the hospital until something was done about this problem. The doctor in the ER arranged for my husband and I to talk to the in-house pediatrician, Dr. Clemmens. Dr. Clemmens sat down with my husband and I, really listened to what was going on and took notes. He ordered every test imaginable and took a real interest in Kaley. At the hospital, all of Kaley’s tests came back normal. Dr. Clemmens then recommended that Kaley transfer to Johns Hopkins where they specialize in pediatric disorders.

Once Kaley was at Johns Hopkins a sleep and ph study were arranged. As it turned out, Kaley scored in the moderate range for acid reflux. The doctor explained that any score over 12 was a positive result…Kaley scored a 22. The pulmonary doctor explained that when infants reflux they may cover their airway with their tongue to prevent anything entering their lungs. This is the explanation for her breathing/choking trouble. Once her diagnosis was established, Kaley was released from Johns Hopkins 6 days later on thickened formula (which helps to keep food down), medication: Prevacid and Reglan and a sleep apnea monitor. Thankfully, she is doing quite well (knock on wood)! She is 6 months old and in the 97th percentile for weight! I am eternally grateful to Dr. Clemmens for his empathy and medical proaction that he took for Kaley. She is a very happy, healthy and charming little girl and all of us are resting a little easier these days.

I hope this story finds comfort to other parent’s who have infants and/or children who are experiencing acid reflux. It is a terrifying and exhausting experience for both the parents and children. We are very fortunate that we found excellent medical and emotional care through Anne Arundal Medical Center in Annapolis, Maryland and Johns Hopkins in Baltimore, Maryland. I wish the same for each parent and child experiencing acid reflux.

Sincerely,

Tamara Gasior

From

The links page has been totally updated. There are sections for medical information, books, products information which includes links the full package insert for all the reflux medications, and links to home pages.

[pic] Subject: thickening breastmilk

Okay, I am going to post something that I am sure will get confused responses, but here goes. I also breastfeed and I pump part of the time for bottles also. We were thickening with rice cereal from when my daughter about 2 months until 5 months old. I would notice that the tsp. per ounce we used looked thick at first, but then seemed to water down some. Also, I would read about all these people having to buy new nipples to allow the thickened feeds through, but I never had to do this because she was able to drink it fine. My ped. GI had us continue until one day when we visited his office and he happened to have a resident student with him. The resident had just completed a rotation in the NICU at a children's hospital and said that breastmilk breaks down the rice or oatmeal cereal and basically turns it to nothing. She said that in the NICU, they thickened breastmilk with "Thick-it" which is purchased at pharmacies. My doctor said that he had heard this, but thought that the rice cereal still thickened breastmilk some. However, he told us we could stop since we had not noticed any improvement with the thickened feeds. We also switched meds. that day and noticed a improvement with the med. change. I don't know if this is true and I hope I don't add to the confusion, but thought you might want to know my experience. Good luck!

[pic] Robby's story:

Our son was born 5/20/02, the only boy of our three children. I had experienced preterm labor with Robby as well as with my second pregnancy (she was 5 weeks early). He came to us seven weeks early and 4 pounds 10 ounces. The hospital staff was very impressed with his strength and vigor and repeatedly told us how lucky we were. He appeared to be totally healthy, and they discharged us after only 36 hours. He spent only 4 hours in the special care nursery for observation. Though tiny, he breastfed superbly (better than my other two). We noticed nothing out of the ordinary until day ten. On that day while visiting with a friend I became concerned that Robby looked a little "gray". I immediately picked him up and undressed him to evaluate him and make sure I wasn't over-reacting. He got angry, cried and became vigorous again. I fed him shortly there-after and placed him on my shoulder to burp him. A few minutes later I took him down to look at him and he was purple and limp. The next few minutes seem like a blur to me. I know I ran to the kitchen (and better lighting). I vigorously rubbed his back and yelled at him to wake up. When he didn't respond I gave him a few breaths and rubbed his back like the doctors do to stimulate newborns. That brought him around and he screamed. I called 911 and we went to the hospital.

While in the hospital he was started on oxygen and attached to all the machines. We spent the next three and a half weeks running tests. Chest X-rays, EKGs, EEGs, CAT scans, and a Barium swallow. The barium swallow showed obvious reflux. He continued to breastfeed beautifully through it all. Every other test was normal. The machines however showed numerous apnea and bradycardia spells though out each and everyday. Most times he recovered from these episodes without any help from the staff or us, though sometimes we had to stimulate him o make him come around. His pediatrician started him on Theopholine for the apnea and Reglan for the reflux. He was diagnosed with GERD and Apnea of Prematurity. After a week of these meds he was switched from Theopholine to Caffeine for the Apnea episodes. Caffeine is less caustic to the digestive system). We went home with an Apnea monitor, oxygen, and a Reflux wedge for positioning.

After two days we returned to the hospital for severe jaundice. He was treated with photo-therapy lights and sent home with a home photo-therapy light for the next week. Thoughout all of this Robby didn't show signs of discomfort but didn't sleep more than 2 hours at a time. He "spit-up" with more frequency s the days passed but continued to gain weight and thrive. He did however continue to have numerous Apnea/Bradycardia episodes a day, sometimes as many as 20 per day. By 5 weeks of age I started to see Robby show signs of being uncomfortable 20-30 minutes after eating. The pediatrician referred us to a GI specialist at this time, who started him on Zantac 3 times a day. Unfortunately we relocated just after this so we had to begin the process again.

Robby was still on oxygen at this point as well as the apnea monitor. The Zantac seemed to relieve his pain for about two weeks and then he out-grew the dose. Once we settled and found new doctors we increased his doses of Zantac and Reglan for his weight and that once again made him comfortable. We weaned him from his oxygen at 4 months and continued to increase his meds as needed. I tried introducing some solids at this point after relenting to pressure from his Pedi GI who felt this would solve most of Robby's problems. However by 5 months I began to feel like the Zantac was not relieving his discomfort and the solids just seemed to make him more uncomfortable. He slept very little and fussed/cried most of his waking hours. I pressured his pedi GI to try a proton pump inhibitor, but was told that Zantac was the drug of choice and most babies responded to this therapy.

Finally at 6 1/2 months the doctor agreed to give Prevacid a trial period. Within three days Robby was smiling cooing and seemed like a new baby. Then the doctor phoned and said his department head wanted to switch him to Prilosec because it came in a liquid form. I was hesitant to say the least after finally finding what I thought would work. We tried the Prilosec for six days and then I switched him back. I notified the doctor the next day and begged him to allow us to use the Prevacid because Robby had regressed to not sleeping and fussing so much again. He agreed and we have been on Prevacid again for 2 weeks.

We have since begun the battle of solid food. Robby has never had any problems with food refusal but it seems each time I try solids for a day or two he becomes restless and irritable. I am so grateful for the strides we have made and that my son continues to make it over each hurdle, yet we still seem to have such a long road ahead of us. I long for the day he can be a more normal baby and we can both get some much needed quality sleep. Thank you again for all you have done for the rest of us out here.

Sincerely, Laura

"It is only when we have experienced love that we truly realize what would be lost by missing it" Leo Buscaglia

New Members March/May

Kimberly Thornton, Mount Airy, MD, 301-831-5216, kt5604@ Tyler, (5/9/02).

Anitra Romig, Davie, FL, 954-424-2617, aneat@ Dylan, (7/18/02).

Chris and Laura Showalter, Harrisonburg, VA, 540-432-1377, clshowal@ Lance, (5/02).

“Started a couple weeks after birth – with gagging and choking at times other than meal-time, along with painful crying, spitting up and occasional vomiting.”

Questions for other members: “- did this cause developmental delay? - when child was old enough to roll over, did he/she have trouble sleeping on his/her back (trouble & choking?)”

Angela Gaskin, Lillington, NC, 910-890-3-8464, regisgaskin@ Luke, (5/31/02).

Michelle Livingood, Chalk Hill, PA, 724-329-0984, Ben, (5/1/91). “Asympomatic until 3 mo. Ago, then headaches & abdominal pain. Found to have F.A.P. and GERD w/ lesions in esophagus. Taking Nexium & Zantac – not doing well w/ meds – very tired & grouchy but symptoms are gone.” Questions for other members: “Does the side effects of meds continue or do they lessen?How do you send a growing boy to bed hungry (avoiding eating 3 hours prior)?”

Sheryl Flum, Alexandria, VA, 703-379-5319, sflum@ Lauren, (11/19/01).

“I adopted my daughter Lauren in Hefei, China, the day before her first birthday. Thus, I have no information about her family history. There was no indication of any digestive problems in her referral information either.

Since the day after I received Lauren, she has been periodically vomiting. Sometimes she vomits immediately after eating, sometimes it is several hours after eating. Sometimes its only a small amount of food or milk, sometimes it is whole pieces of undigested food eaten as much as 6-7 hours earlier. She’s gone about 8-9 days without throwing up. She’s also had spates where she’ll throw up 5-6 times in a single day. She is always congested – her breathing sounds like she is purring. She’s had 3 ear infections all in the right ear.

My pediatrician at first thought the vomiting was due to the way she was swallowing. He felt that the “juicy” breathing sounds were caused by a lack of cartilage around her trachea. When the throwing up didn’t stop and she was still congested, he tried her on the allergy medicine Zyrtec. We were hoping she had an allergy to dust or mold that was causing congestion which led to vomiting. (Lauren often coughs before throwing up.) That didn’t work.

Next we tried Zantac. The vomiting continued. Lauren throws up without warning. She is generally perfectly happy before she vomits. Then she coughs or hiccups, and it’s like a dam bursts. Sometimes it comes through her nose. As soon as the shock of throwing up passes, she is just fine – and she’s often hungry! Lauren frequently throws up in the car.

Finally the pediatrician recommended that we see a gastroenterologist. I was a bit reluctant to rush to a specialist since I didn’t want to put Lauren through testing if her general pediatrician (whom I like immensely) could find a solution. But as no solution was forthcoming, the specialist seemed appropriate.

Yesterday, Lauren was examined by the pediatric gastroenterologist. She is now 15 months. Based on her symptoms, the specialist believes she has reflux. He also believes it is likely that she’s had it all of her life, but there is no way to confirm this. She is scheduled to have an Upper GI test next week to rule out any structural defects.

Lauren is now on two medications. She takes 2 cc’s of Zantac, twice daily. She will also now take 1 cc or Reglan, 3 times daily, each does to be given 30 minutes before breakfast, lunch, and dinner. I have not done a lot of research on either drug yet, and would appreciate any information on the potential side-effects. We’re hoping that the drugs will reduce her congestion. Additionally, the GI recommended that Lauren not eat too much at any one meal.

With all this, Lauren is still thriving. She has gained more than 2 pounds during the three months she’s been home. She is developmentally on track – she walks well, feeds herself, and is learning to speak. I am very hopeful that she will ultimately outgrow the reflux. I am concerned however, that she is already 15 months old and still vomiting regularly.”

Lisa Bushman, Alexandria, VA, 703-339-7413, jesseandlisab@ Talia. “Had multiple short spells without breathing in the first couple of weeks. Was hospitalized from 48 hrs. after birth for 5 days.”

Anne Schmidt, Omaha, NE, 402-573-8297, andynanne@ Aubrianna, (7/02).

“Aubrianna was born six weeks early and seem to have reflux within the first week of life. By six weeks of age, it had escalated to food refusal and painful colic-like episodes (screaming for 1-3 hours) at each feeding, along with profuse spitting up. The real difference seem to come when we tried Neocate at four and half months of age. She was also diagnosed with MSPI (Milk Soy Protein Intolerance), which would be why changing to Neocate made such a difference. We had tried Alimentum, but it still has some milk proteins, and this did not sit well with her at all. The primary formula she had been on until we went to Neocate was Isomil, a soy based formula. Her painful episodes reduced significantly by seven months of age. We also have her on Zantac, three times a day. We did try Prilosec at two months of age, but again, this did not sit well with her. Her spitting up/vommiting episodes seemed much worse than with zantac, although it could have been just a bad time frame for her reflux/MSPI when we tried it. Her pediatric GI (which we finally got referred to at six months of age) suggested that we also put her on Reglan, however we had read about possible Parkinson’s type side-affects with this drug, and Aubrianna was not losing weight (she had always gained weight). Also, by that point, we felt that the Neocate was probably making a difference for the better, so we decided to decline the Reglan, the possible advantages did not outweigh the possible negative side-affects. At eight months old, she is now trying solids, but it is going slow.”

Sheri and Dan Valenti, East Greenbush, NY, 518-477-7233, slvalenti@ Brianna, (11/29/02).

“Diagnosed at 7 weeks, taking cimetidine, awaiting barium swallow & 1st appoint. W/ pediatric GI.”

Mollie Loeffler, Alexandria, VA, 703-333-3108, molliemorison@ Samuel, (12/24/02).

Jenny Lawrence, Houston, TX, 713-862-8925, jennylawrence@ Seth, (12/26/02).

Amanda Forrest, Jacksonville, FL, 904-220-6096, oddbird77@ Ian, (1/8/03).

Kate Finnie, Sydney, Australia, 02-9697-9936, katefinnie@.au Gus, (2/25/03).

“I have two children Oscar (2) and Gus (6 weeks), both of which suffer from reflux. I also suffer from reflux as do my sister’s two children, my mother, my paternal grandmother and my husband’s mother, so I guess you could say that in this family it is well and truly hereditary.

Having just escaped to the local shopping mall sans children – thank god for fathers – and seen loads of babies sleeping peacefully sleeping in their prams I have to wonder what I did to get two human mix masters with wails to match the motion. I suppose the hardest thing for me at the moment is the ‘reflux imposed’ house arrest…”

Kathy Gunter, LaGrange, GA, 706-883-7322, KBGuntercccslp@ .

Julie Root, Clermont, FL, 352-241-9336, jewel3364@ Abigail, (2/14/03).

“Multiple children w/ GERD (3 out of 4 have reflux).”

Rachel Rooney, Greenwood, MO, 816-537-6408, mom21boy@ Kyle, (10/21/02).

“I think my experience thus far has been fairly positive. My son was diagnosed early. The first medication (Zantac) we tried has worked for us so far. The dosage has been adjusted a few times, but I have gotten better at recognizing the signs that it needs to be changed.”

Bethany Sherrard, Industry, TX, 979-357-4769, neezer2@ Lukas, (10/8/99).

Yazmin Bratter, Sea Cliff, NY, 516-671-1168, ybratter@ Elijah, (3/18/03).

Stacy Hathaway, Flower Mound, TX, 469-293-0203, sshathaway@ Megan (9/21/02).

Catherine Amwoza, Bolingbrook, IL, 630-679-0864, cathya@ Dominic (11/23/02).

Susan Bizal, Bloomington, IN, 952-835-4161, suebizal@ Gabriella (2/6/03).

“I have an infant who has just been diagnosed with GERD. She has been put on Zantac which has helped tremendously, and we switched to straight formula at the same time. My milk dried up at that time. She was getting part pumped breast milk, part formula since 8 weeks, all breastmilk before that. Since being put on Zantac and going to formula, it has been impossible to get more than 2 ounces in her at one feeding. Before, we were getting 4-5 ounces in her. It would take 45 minutes or so and in a couple of installments, and she fussed but she would eat it. Now she will only do 2 ounces and maybe 2 more ounces an hour to an hour ½ later. She isn’t fussy or crabby though. Has anyone else had this problem or something similar? Is she just adjusting to being in less pain? Or is the formula filling her up more than the breastmilk? It just seems very odd. Help!”

Terri and William Frank, Walled Lake, MI, 248-960-1982, terrifrank@ Meredith (1/3/03).

Tessa Carmen De Roy, Los Angeles, CA, 323-660-0040, tessacarmen@ Jackson (8/17/02).

“I am trying to get a handle on what sends Jackson careening into another round of severe difficulty as opposed to just the day to day difficulty which seems to be resolving itself very incrementally. Most recently, the addition of yams to his diet (he is eight months old) sent him into several days of disrupted sleep and discomfort – all of which we are still in, so I don’t know when and if and how it will resolve. Any information about diet issues would be helpful.”

Renewing Members:

Anne-Marie Nichols (renewing), Longmont, CO, 303-833-6601, ampjnichols@ Lucie Mae (3/13/03). “I’m mom to two refluxers; Nathan, now 3 and Lucie, almost 7 weeks. Nathan was 7 weeks premature (3lbs. 11 oz.) and spit up from the very beginning. Luckily for us he was a “happy puker” And had no pain. Unfortunately though, he puked up to 30 or 40 times a day, sometimes projectile, sometimes just oozing out. Nathan, us, furniture, toys and carpets were covered in puke. Because he had good weight gain, his pediatrician said this was only a “laundry problem” And never did any tests, never had us try different formulas (I switched to soy just because it smelled better when spit up), never had us thicken the formula or try any medications.

At 8 months, we moved from Illinois to Colorado. As soon as I could, I scheduled appointments with the Children’s Health Clinic and a pediatric GI specialist at Children’s Hospital in Denver. Both his new pediatrician and the GI specialist said throwing up that much wasn’t normal. The specialist ordered a barium swallow, which showed reflux (duh!) and put him on Reglan. However, nothing seemed to help and Nathan continued to reflux.

Also around this time we noticed that Nathan seemed really “floppy” and wasn’t sitting up very well. We had him evaluated and he started occupational and physical therapy through the school district’s Early Intervention program. They said his low muscle tone was the cause of his reflux (the muscles weren’t holding the food down). He stopped refluxing at 13 months when he developed enough muscle strength to crawl. Another effect of the reflux and low muscle tone was that he gagged on food, was slow to start solids, and didn’t stop using a bottle until nearly 2 years of age. We worked with his OT on eating, and now he's doing great. He eats everything but chicken and fish.

Lucie was born nearly 4 weeks early this past March. (6 lb). In the hospital she was slow to eat, and spit up a lot. When we got her home, her eating improved and her spit up increased. At 4 weeks, it was obvious to me that she had the painful form of reflux – arching, crying and spitting out the nipple at feedings. Her pediatrician agreed and recommended thickening her formula with rice cereal (2 tsp. Per ounce). After a week, the spit up lessened, but not the discomfort. Lucie was then put on .4 ml of Zantac twice a day. It seems to have helped somewhat. She doesn’t puke up as much, it’s rarely forceful enough to come out of her nose like it used to, and her pain is somewhat less. However, it already is beginning to lose effectiveness, and I have a call into her pediatrician to either up her dose or try something else. Lucie also has a full blown colicky time late in the afternoon to early evening. She cries and cries and nothing seems to comfort her. We’re experimenting with everything from baby wearing, to music, to stroller rides, to stripping her down to just her diaper, to a nice warm bath. It’s a trying time for the whole family when she’s like that. Thanks for reading our story.”

Also Renewing: Lisa Platow, Benny Kerzner, Robert and Wanda Grimaldi, Marguerite Le Vecke, Diane Flores, Kathleen Biles, New Visions Feeding Clinic, Ann Cacigas, Lisa Merritt, Jacque and Al Pulsifer, Cedric Priebe, Greg and Tammy Harvey, Rosemary and Lawrence Navarre, Jeffrey and Rebecca Krol, Theodore and Mary Dalpiaz, Jake and Angelette Howard, Anne-Marie Nichols.

Thank You

Friends (up to $25): William and Michaelene Nally, Stephen and Amy Smith, Brad and Diana West, Don and Marianne Bates, Yazmin Bratter, Lisa Bushman, Catherine Amwoza, Jacqueline Barth

Contributors ($26-99): Robert Grosshandler, Marguerite Le Vecke

Supporters ($100-$499): Lisa Gray, Patricia and Richard Gambino, Jay and Valerie Aber, Fannie Mae Foundation, SHS International.

Kids Reflux Digest

Science Fair Project:

Title: What is the Best Drink for Someone with Reflux?

By Rebecca Burns, Grade 3

Problem: To find good drinks for kids with reflux. Some drinks don’t taste good and some drinks hurt your throat if you have reflux. Sometimes the doctor might tell a kid not to drink orange juice or soda. I want to know what drinks I can drink. I want to know what drinks are high in acid.

Hypothesis: I think orange juice has a lot of acid because oranges have a lot of acid in them. My doctor told me not to drink orange juice, soda or drinks with caffeine.

Materials: Litmus paper, liquids and juices, paper cups.

Procedure:

1. Take out the liquid or drink.

2. Put the liquid in cups.

3. Put the litmus paper in the liquid.

4. Count to three.

5. Take the litmus paper out.

6. Look at the color of the paper.

7. Match the color from the color key card. That is how you test.

Results:The following liquids were tested. The number tells the pH or acidity of the liquid. A number 4 or less is acidic.

Simply Orange Juice 3

Hi C Fruit Punch 2

Minute Maid Pink Lemonade 2

Silk Vanilla Soy Milk 5

Tropicana Twister Blue Blast 2

Hawaiian Punch 2

Twister Kiwi Grape Combination 1

Twister Tropical Fruit Fury 2

Stop and Shop 100% Apple Juice 3

Lemon juice 1

Vinegar 1

Kool Aid Cherry Sqeeze 2

Orange Gatorade 2

Maui Lai Mango Mango 3

Simply Orange High Pulp juice 3

Hi C Pink Lemonade 2

White Grape Juice 2

Minute Maid Low Acid Orange Juice 3

Cran cherry Juice 2

Sunny D Juice 2

Nesquik Chocolate Milk 4

White Wine 2

Fat Free Milk 4

Cran Mango Juice 2

Minute Maid Original Juice 3

Lactaid Milk 4

Tap water 3

Brita water 3

Hot coffee 3

Coca Cola 1

Splash Cooler Capri Sun 1

Sprite 3

Conclusion: I tested 32 liquids to see how much acid was in them. I found out that most liquids were a pH 3 or pH 4, which is high acid. I found out that only a few liquids were 4’s and 5’s, which is low acid. I was surprised that Coca Cola was a pH 1 and Sprite was a pH 3. We got an ad in the mail about low acid orange juice for people with reflux. We tested that juice but it had the same amount of acid as regular orange juice. They didn’t tell the truth in the ad! I found out that most drinks have a lot of acid in them and that isn’t good for reflux. The best drinks for someone with reflux are: chocolate milk, lactaid milk and soymilk. I found out that the best soda for someone with reflux is Sprite because it has less acid than Coca Cola. I can’t drink a lot of soda because it makes my reflux worse but from now on, I will drink Sprite instead of Coca Cola.

My Trip to Capitol Hill

By Rebecca

Here are some exciting parts of my trip to Capitol Hill. When we got there we saw a video that tells us about what to say and do. After the video was over the person told us the Do’s and Don’ts TO SAY to the people we are meeting with. Then we had a meeting with our group and finding the groups we were in. First we went to a building with doors and flags from the different states. We had a meeting in Congressman Udall’s office and got to have our picture taken in his office. He is from Colorado. Then we walked to the Rayburn Office Building and we had another meeting. When we were leaving, the fire alarm went off because there was a real fire in the building! But, it was a small one and it didn’t hurt anyone.

Then we had one more meeting. After that meeting, we had lunch. We visited Sentator Sarbanes and Senator Mikulski’s office and we told them that they should give more money for research about reflux.

The best part of the day was lunch and missing school and seeing the Capitol.building and all of the offices where the senators work. They were really nice to kids and gave us books about congress and the Capitol. I hope I get to go next year. I hope some other kids with reflux will come too.

Reflux Word Search

|H |

|ACID |BELCH |BURP |

|ESOPHAGUS |GERD |PAGER |

|REFLUX |STOMACH |VOMIT |

Word Search by Jenna Burns

There is a new web site about pediatric GERD featuring Gerdie and her teacher, Professor Gusty. Check out the20 minute cartoon on and listen to Gerdie try to pronounce gastroesophageal reflux. Viewing software can be downloaded it you don’t already have it.

SLEEP YOUR WAY TO BETTER HEALTH!!!

Drug Free Alternative, FDA approved Pillow

The PROP UP PILLOW is the most innovative patented way to help treat reflux for children and adults.

{Invented by a single Mom who had the start of esophageal cancer from reflux, who now dedicates her life to educating and helping others with reflux.}

Comes with 4 pillow cases

Reimbursed by major medical insurance

Includes 2 adjustable memory foam lumbar and cervical pillows

Made with very soft body-contouring memory foam

1.888-812.7499

PAGER Association, Inc.

Pediatric Adolescent Gastroesophageal Reflux Association

PO Box 1153

Germantown, MD 20875-1153

Full Address Service Requested

Do not destroy newsletter

Tucker Sling Ad

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Staff

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