Download My Only Voice - Pediatric/Adolescent Gastroesophageal Reflux

PAGER Association
Reflux Digest
June 2003 7(2) page 1
PAGER Association
Reflux Digest
June 2003 7(2) page 2
REFLUX DIGEST
Volume 7 Number 2
ISSN 1088-4939
June 2003
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
PAGER Association
Reflux Digest
Table of Contents
Testimony
Organizational news
Medical Formula Task Force
Eosinophilic Enteritis
Conferences
Books etc
Products
Journal articles
From Parents
Kids Reflux Digest
1-5
6-8
8
8
8-10
11-12
12
12-13
13-17
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
[email protected]
www.reflux.org
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.
June 2003 7(2) page 3
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.
PAGER Association
Reflux Digest
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 www.reflux.org
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.
June 2003 7(2) page 4
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.
PAGER Association
Reflux Digest
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-MissSIDS”) 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,
June 2003 7(2) page 5
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
PAGER Association
Reflux Digest
June 2003 7(2) page 6
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.
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.
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.
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.
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
Above: Beth and Katie Anderson, Jan, Rebecca and
Jenna Burns. Below: Rachel and Jessica Penkert.
Photos by Bill Petros of Washington DC
PAGER Association
Reflux Digest
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.
June 2003 7(2) page 7
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.
If you would like to join Team PAGER, contact Jan
Burns at [email protected]. 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, [email protected], 703-426-1768
Carla Williams is getting parents in Temple Texas
together to share information and offer support. Contact
Carla Williams, 254-791-1789, [email protected].
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.
Staff
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
PAGER Association
Reflux Digest
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.
June 2003 7(2) page 8
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:
http://www.foodlion.com. 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 amazon.com 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 iGive.com. Use the link on our
site or type:
http://www.iGive.com/html/refer.cfm?causeid=5949
PAGER Association
Reflux Digest
Medical Formula Task Force
Quite a few PAGER members have children on hypoallergenic 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
June 2003 7(2) page 9
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!
PAGER Association
Reflux Digest
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
June 2003 7(2) page 10
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.
PAGER Association
Reflux Digest
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 indepth 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.
June 2003 7(2) page 11
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: www.devdelay.org
St Joseph’s Children’s Hospital, Center for pediatric
Feeding and Swallowing Disorders, Patterson, New
Jersey, 973-754-4300, www.sjhmc.org
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 languageline.com
certified medical interpreters. PAF can be reached at
800-532-5274 or www.patientadvocate.org.
The North American Society of Pediatric Gastroenterology, 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
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Reflux Digest
June 2003 7(2) page 12
now available through www.naspghn.org and is available
in Pocket PC and Palm formats.
Eat Right 4 Your Type by Dr. Peter J. D’Adamo with
Catherine Whitney
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. www.acidrefluxkids.com
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.
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. www.askdrsears.com
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”.
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.
PAGER Association
Reflux Digest
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 www.flat-d.com
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.
June 2003 7(2) page 13
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:
http://www.medscape.com/viewarticle/451856 .
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:
http://www.medscape.com/viewarticle/452464 .
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
http://www.pediatrics.org/cgi/content/abstract/110/5/972
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”
http://www.medscape.com/viewarticle/453582 .
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
http://medscape.com/viewarticle/453693_2
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 http://medscape.com/viewarticle/453451
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
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Reflux Digest
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. http://medscape.com/viewarticle/453419
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.
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
June 2003 7(2) page 14
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 inhouse 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
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Reflux Digest
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 www.reflux.org
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.
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!
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
June 2003 7(2) page 15
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
PAGER Association
Reflux Digest
June 2003 7(2) page 16
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.
Angela Gaskin, Lillington, NC, 910-890-3-8464,
[email protected] Luke, (5/31/02).
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.
Sheryl Flum, Alexandria, VA, 703-379-5319,
[email protected] 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.
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,
[email protected] Tyler, (5/9/02).
Anitra Romig, Davie, FL, 954-424-2617, [email protected]
Dylan, (7/18/02).
Chris and Laura Showalter, Harrisonburg, VA, 540-4321377, [email protected] 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?)”
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)?”
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
PAGER Association
Reflux Digest
June 2003 7(2) page 17
an Upper GI test next week to rule out any structural
defects.
“Diagnosed at 7 weeks, taking cimetidine, awaiting
barium swallow & 1st appoint. W/ pediatric GI.”
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.
Mollie Loeffler, Alexandria, VA, 703-333-3108,
[email protected] Samuel, (12/24/02).
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,
[email protected] 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,
[email protected] 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, 518-4777233, [email protected] Brianna, (11/29/02).
Jenny Lawrence, Houston, TX, 713-862-8925,
[email protected] Seth, (12/26/02).
Amanda Forrest, Jacksonville, FL, 904-220-6096,
[email protected] Ian, (1/8/03).
Kate Finnie, Sydney, Australia, 02-9697-9936,
[email protected] 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,
[email protected] .
Julie Root, Clermont, FL, 352-241-9336,
[email protected] Abigail, (2/14/03).
“Multiple children w/ GERD (3 out of 4 have reflux).”
Rachel Rooney, Greenwood, MO, 816-537-6408,
[email protected] 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,
[email protected] Lukas, (10/8/99).
Yazmin Bratter, Sea Cliff, NY, 516-671-1168,
[email protected] Elijah, (3/18/03).
Stacy Hathaway, Flower Mound, TX, 469-293-0203,
[email protected] Megan (9/21/02).
Catherine Amwoza, Bolingbrook, IL, 630-679-0864,
[email protected] Dominic (11/23/02).
Susan Bizal, Bloomington, IN, 952-835-4161,
[email protected] 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
PAGER Association
Reflux Digest
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, 248-9601982, [email protected] Meredith (1/3/03).
Tessa Carmen De Roy, Los Angeles, CA, 323-660-0040,
[email protected] 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, 303833-6601, [email protected] 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).
June 2003 7(2) page 18
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, AnneMarie 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.
PAGER Association
Reflux Digest
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
June 2003 7(2) page 19
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.
PAGER Association
Reflux Digest
June 2003 7(2) page 20
Reflux Word Search
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Can you find these words?
ACID
ESOPHAGUS
REFLUX
BELCH
GERD
STOMACH
BURP
PAGER
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 www.acidrefluxkids.org and listen to Gerdie try to pronounce gastroesophageal reflux. Viewing software can be
downloaded it you don’t already have it.
PAGER Association
Reflux Digest
June 2003 7(2) page 21
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.}
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Reimbursed by major medical insurance
Includes 2 adjustable memory foam
lumbar and cervical pillows
Made with very soft body-contouring
memory foam
www.propuppillow.com 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
PAGER Association
Reflux Digest
June 2003 7(2) page 22