Notes From Nancy:
Hello! The last few months have been
very crazy for me personally and that is why there hasn't been a newsletter in quite some
time. I apologize and from now on it will be sent out once a quarter.
If you have topics of interest related to GERD and related motility disorders, that you
would like more information on, please don't hesitate to email me!
I sent off the papers last month to make
International Association of Reflux Parents a legal non profit corporation! We
should receive confirmation from the state of Texas in a few weeks. Then, Mark(our
attorney) and I will begin the lengthy process of getting the IRS to give us tax-exempt
status. This could take anywhere from 3 to 6 months.
I have a lot of items that have been
donated for us to sell to raise money and I am in the process of trying to do that right
now. If you are wanting a quick tax deduction, please contact me---you can take a
deduction for a contribution to IARP for 1999, since we are tax-exempt pending. We
need your help!
I am going to be adding an online bookstore
to the GERD WORD web site! If there are books that you think we should carry in the
store, please email me.
God Bless and hang in there! :-)
Nancy-Executive
Director, International Association of Reflux Parents
A new treatment for gastroesophageal
reflux disease (GERD) by Conway Stuart Medical Inc.
SUNNYVALE, Calif.--(BW HealthWire)--June 7, 1999--A new
treatment for gastroesophageal reflux disease (GERD) by Conway Stuart Medical Inc. of
Sunnyvale made a very memorable debut at the Digestive Disease Week conference recently
held in Orlando, Fla. The treatment, called the Stretta(TM) Procedure, was greeted with
much enthusiasm by the more than 600 physicians and medical-industry people from around
the world who visited the company's booth.
Receiving the most attention -- and praise -- were the
Stretta Procedure video and equipment that were on display. Viewers of the video watched
with keen interest, and marveled at how easily and quickly the procedure could be done.
Some even watched it a number of times to better "digest" its information.
Another area drawing a lot of interest was the clinical trial
-- the methodology, clinical protocol, patient selection and outcomes. Many booth visitors
expressed a desire to conduct trials in their own areas. Company officials were delighted
that one of the most frequently asked questions over the four-day conference was
"When will it be available?"
The treatment offers an attractive alternative to current
medication and surgical options, and can be performed in about 40 minutes on an outpatient
basis.
Stuart Edwards, president and founder of the company, said,
"A terrific benefit of the Stretta Procedure is that patients are able to return to
full activity within 24 hours of having it done." Edwards estimated that its cost
would be approximately one-fifth that of the cost of surgery and about the same as a
year's supply of medication.
More than 14 million Americans (36 percent of whom are older
than 65) currently suffer from GERD, and, for unknown reasons, the number continues to
grow. It results when acidic stomach contents "reflux" up into the esophagus,
causing severe heartburn, regurgitation, chronic cough and other symptoms.
Researchers in Sweden have proved that even medically treated
GERD may accelerate esophageal adenocarcinoma. Further reports state that inadequately
treated heartburn increases the risk of cancer eightfold, while among study participants
who had particularly severe and long-standing heartburn, the risk of cancer rose by more
than 40 times.
David Utley, M.D., the medical director for the project,
stated: "Although GERD is rarely fatal, it ranks almost at the top of ailments that
impact quality of life. It is topped only by psychiatric disease."
To date, more than 30 patients have undergone clinical
testing of the Stretta Procedure. Utley said: "The Stretta Procedure is proving to be
dramatically effective in clinical studies against symptoms of GERD. Additional clinical
sites at major medical universities across the country also have begun conducting studies.
Testing will be conducted in several foreign nations, too."
He added that if further clinical data proves positive, the
procedure could be available to the general public before the end of the year.
The U.S. Food and Drug Administration has cleared the Stretta
Procedure for use in coagulating tissue. An FDA submission seeking clearance to promote it
for special GERD indications is currently pending.
For more information on the Stretta Procedure or the company,
visit the Conway Stuart Web site at www.conwaystuart.com or contact Carol Chludzinski,
vice president, Sales and Marketing, Conway Stuart Medical Inc., 735 Palomar Ave.,
Sunnyvale, Calif. 94086; telephone 408/733-9910; fax 408/522-8699. Chludzinski may also be
reached by e-mail at carolc@csmedical.com.
Effects
on behavior state of prone versus seated positioning for infant
Division of Pediatric Gastroenterology,
University of Pittsburgh School of Medicine, Pennsylvania.
To evaluate the effect of positioning on
behavior in infants with gastroesophageal reflux, 48 infants younger than 6 months of age
(range 1.5 to 28 weeks, median 13.5) with reflux were positioned continuously prone (24
infants) or seated (24 infants) during a 120-minute postprandial period, during which
behavior was monitored continuously. The prone position was associated with more sleep
time, 83.5 (16 to 113) vs 43 (0 to 117) minutes, P = .01. This increase in sleep time in
the prone position could be largely accounted for by a tendency toward a decrease in
crying time, 19 (0 to 82) vs 38.5 (0 to 91) minutes, P = .07, which is expressed further
by the significantly smaller number of prone than seated infants who cried longer than 30
minutes, P = .02. A parallel reduction in noncrying awake time in the prone vs the seated
position was not significant: 15 (0-51) vs 31 (3 to 84) minutes, P = .13.
Contribution of Gastro-Esophageal Reflux
To Apnea in Infants
Marc G Weiss, Jonathan K Muraskas, Harold A Conrad,
Thomas F Myers (Spon. by M. Susan Jay)
Gastro-esophageal reflux (GER) is purported to be a cause of apnea
and bradycardia (A/B) in infants. The degree to which GER contributes to A/B has not been
well established. We therefore reviewed one year's experience with 5 channel
polysomnograms (PSGs) to evaluate the role of GER in A/B of infancy. Methods: All PSGs
that we evaluated from 11/1/96 through 10/31/97 were reviewed retrospectively. We included
only those studies that recorded esophageal pH as well as chest motion (impedence),
airflow (nasal thermistor), heart rate, and oxygen saturation (pulse oximetry). Those
performed in infants beyond 6 months corrected gestational age were excluded. Studies were
a minimum of 12 hours in length. Infants were fed apple juice during the PSGs. Abnormal
GER was defined as esophageal pH < 4 for > 10% of study time. Apnea was defined as
cessation of airflow for > 15 seconds, bradycardia as heart rate < 80/min for >
10 seconds, and desaturation as oxygen saturation < 80% for >10 seconds. GER was
considered causative of A/B if the onset of GER preceded the A/B by < 2 minutes.
Results: 236 PSGs performed on 212 patients met the criteria. 65% of the studies were
performed on babies < 37 weeks gestation at birth. Studies were performed at mean
postnatal age 5.7 weeks, corrected gestation 39.3 weeks; only 37% were < 37 weeks
corrected. Abnormal GER was found in 114 studies (48%), A/B in 75 (32%). Of those with
abnormal GER, 41 (36%) had A/B, while 41 (55%) of those with A/B had GER. In only 5 cases
was GER felt to be a cause of A/B; of the patients with A/B, GER was a causative in 7%. Of
these 5 patients, 4 were < 37 weeks at the time of the PSG. CONCLUSION : While
GER commonly co-exists with A/B in infants, GER is an uncommon cause of apnea or
bradycardia.
Something I found Very Cute!
 |
Surgical Treatment of
Gastroesophageal Reflux in Children: A Combined Hospital Study of 7467 Patients:
Eric W. Fonkalsrud*, Keith W. Ashcraft, Arnold
G. Coran§, Dick G. Ellis, Jay L. Grosfeld, William P. Tunell#, and Thomas R. Weber**
From the Departments of Surgery, * UCLA School
of Medicine, Los Angeles, California; Children's Mercy Hospital, Kansas City, Missouri; §
C. S. Mott Children's Hospital, Ann Arbor, Michigan; Cook Forth Worth, Children's
Hospital, Fort Worth, Texas; J. W. Riley Children's Hospital, Indianapolis, Indiana; #
Children's Hospital, Oklahoma City, Oklahoma; and ** Cardinal Glennon Children's Hospital,
St Louis, Missouri.
Objective. To review retrospectively the
combined clinical experience with the surgical treatment of persistently symptomatic
gastroesophageal reflux (SGER) in childhood from seven large children's surgery centers in
the United States.
Design. During the past 20 years, 7467 children
<18 years of age underwent antireflux operations for SGER at the seven participating
hospitals. Fifty-six percent were neurologically normal (NN) and 44% were neurologically
impaired (NI). The most frequent diagnostic studies were upper gastrointestinal series
(68%), esophageal pH monitoring (54%), gastric emptying study (32%), and esophagoscopy
(25%). The age at operation was under 12 months in 40% and 1 to 10 years in 48%. The type
of fundoplication was Nissen (64%), Thal (34%), and Toupet (1.5%). A gastric emptying
procedure was performed on 11.5% of NN patients and 40% of NI patients. Laparoscopic
fundoplication was performed on 2.6% of patients.
Results. Good to excellent results were achieved
in 95% of NN and 84.6% of NI patients. Major complications occurred in 4.2% of NN and
12.8% of NI patients. The most frequent complications were recurrent reflux attributable
to wrap disruption (7.1%), respiratory (4.4%), gas bloat (3.6%), and intestinal
obstruction (2.6%). Postoperative death occurred in 0.07% of NN and 0.8% of NI patients.
Reoperation was performed in 3.6% of NN and 11.8% of NI patients. The results and
complications were similar among the participating hospitals and did not seem related to
the type of fundoplication used.
Conclusion. The excellent results (94% cure) and
low morbidity with gastroesophageal fundoplication with or without a gastric emptying
procedure from a large combined hospital study indicate that operation should be used
early for SGER in NN children and to facilitate enteral feedings and care in NI children.
Reproducibility of
24-Hour Intraesophageal pH Monitoring in Pediatric Patients
Received Mar 17, 1997; accepted Jun 5, 1997.
Lori Mahajan, Robert Wyllie, Luis Oliva, Francisco Balsells, Rita Steffen, and Marsha Kay
From the Section of Pediatric Gastroenterology and Nutrition, Cleveland Clinic Foundation,
Cleveland, Ohio.
Objective. Despite the widespread use of 24-hour intraesophageal pH monitoring for
evaluation of gastroesophageal reflux in infants and children, there is little published
information regarding the reproducibility of ambulatory pH studies in this patient
population. The purpose of our study was to evaluate the reproducibility of 24-hour
intraesophageal pH monitoring in pediatric patients.
Methods. We prospectively investigated 26 patients with symptoms suggestive of
gastroesophageal reflux (14 females and 12 males) ranging in age from 1 month to 18 years
(mean, 9.2 years). The patients underwent extended intraesophageal pH monitoring over two
consecutive 24-hour periods.
Results. Data analysis revealed that the overall reproducibility of ambulatory 24-hour pH
monitoring is only 69% (r = 0.32). Eight of 26 patients had conflicting results on day 1
compared with results on day 2. Of the 8 patients with conflicting results on day 1 versus
day 2, 5 had normal studies on day 1, but demonstrated pathologic reflux on day 2. Thus,
the false-negative rate for day 1 was 19.2%. The statistic calculated for the total time
the pH was abnormal was 0.32, with values <0.4 representing poor correlation. Spearman
correlation coefficients indicated that the percentage of time with pH <4 (r = 0.64)
and the number of reflux episodes (r = 0.71) per 24-hour period are the most reproducible
pH parameters.
Conclusion. The reproducibility of 24-hour intraesophageal pH monitoring in the pediatric
population is suboptimal. The investigation should be extended or repeated if the result
does not correlate with the patient's clinical history.
Malisa’s Story: A
Teenager Living with GERD and CIP
 When I first got sick I was a month away from my
15th birthday and in the 9th grade. In October 1992 I went to the doctor because of a sore
throat and ended up getting a flu shot during my visit due to childhood asthma. The next
day I was very nauseous and over the next month I lost over 15 pounds. I was 5'5" and
down to 88 pounds by a month later. Over the next year my symptoms progressed from nausea
alone to nausea, severe pain, bloating, heartburn, reflux and vomiting small amounts of
food up to 50 tims a day. My doctors had no clue what was wrong with me and told me it was
all in my head. It wasn't until May of 1994 that I finally got a diagnosis after traveling
to Shands Hospital at the University of Florida. They performed a manometry of my stomach
and small intestine that showed that the motility was very poor due to the nerves not
functioning properly. They diagnosed me with chronic intestinal pseudo-obstruction(CIP).
With CIP the motility is so slow that it acts like an actual obstruction. In July of 1994,
it was determined that I was as malnourished as the children in Ethiopia. I was put on
intravenous nutrition called total parenteral nutrition(TPN) through a permanent
IV(Broviac central line) in my chest. Although I still had the nausea and the pain, I felt
my energy level slowly starting to improve.
In October 1994, I got a G-tube(in my
stomach) and a J-tube(in my small intestine) in hopes of getting my nutrition through the
J-tube instead of intravenously. J-tube feedings are considered much safer since they
don’t have the complications of severe blood infections or liver disease that can
occur with IV feedings. Since I’ve been on TPN I’ve had three severe blood
infections with fevers as high as 104. However, the J-tube feedings were not completely
successful because the motility wasn’t good enough to move the feedings through my
intestinces. Over the past five years I have been able to slowly increase the amount of
feedings that I get to a little over two cups a night. Yet, I still get the majority of my
nutrition and hydration through the central line in my chest. I currently need over 4
liters of fluid a day intrvenously to keep me well nourished and hydrated.
In February of 1997, I had two gallstone attacks and
subsequently had my gallbladder removed. Over the past two years I have been doing farily
well. Although recently my pain has gotten worse again and in addition ot my motility
disorder I now have pancreatic problems also.
As you can imagine, my normal teenage life pretty much
came to a halt with all of this. I missed all four years of high school and was home
tutored. I think the hardest part of being sick as a teenager was missing out on all of
the social aspects of being 15, 16, 17, 18...I still feel like I am catching up on all of
it. It was also really hard for me when I did not have a diagnosis because I knew I felt
so sick and the doctors were telling me there was nothing physically wrong. Normal
teenagers have to deal with an identity crisis as it is, but when you are sick and the
doctors are telling you that you aren’t sick--that makes for a pretty confusing and
frustrating adolescence!!!
I graduated from high school in 1996 and am now 21
years old and in my third year of college. I live in the dorms...tubes, illness, pain and
all. I even go to classes hooked up to my IV fluid. My goal is to be a pediatric nurse
practitioner and work with children and adolescents that are chronically ill. I volunteer
at two local children’s hospitals in addition to going to school full-time. I love
volunteering and seeing the kids’ smiles when they realize that I know what it feels
like to be sick. I volunteered with one little girl who had a G-tube who thought it was
the neatest thing that I had one, too.
Having a chronic illness is extremely difficult and
frustrating at times, but so many people and experiences would be missing in my life if I
had never gotten sick. For three years I was a camper at one of Paul Newman’s camps
for serioulsy ill children. Camp was an incredible experience for me since everyone there
knew what it felt like to be sick. There is an exceptional prsence of unconditional love
and acceptance there that literally changed my life. The counselors and campers I met
there continue to be a very important part of my life. For the past two summers I have
gone back to camp as a volunteer counselor to give other children the love and acceptance
that was given to me.
Despite having a chronic illness for the past six years
I lead a fairly normal life. I feel that having an illness as a teenager has made me a
stronger, more determined person. Since I have my whole life ahead of me, I have the
ability to use my illness in a postitive way to help others. I love talking to other
teens, young adults, and parents who have similar problems. Please feel free to email me
anytime!
Malisa Matheny---Email: Ruthemath@aol.com
Symptoms of CIP:
Abdominal pain, cramping, constipation,
diarrhea, nausea, vomiting, distention, early satiety, food aversion, weight loss and
inability to eat normal amounts of food.
Often times, gastroparesis, dysphagia,
esophagitis, gastric reflux, malnutrition, difficulty with urination, bacterial overgrowth
may occur.
In addition, patients may experience low back
pain, lethargy, muscular and/or joint pain, as well as, other unexplained symptoms.
Patients with CIP may not look ill. Some may
be of average weight, others underweight, and still others may be obese.
American Society of Adults with
Pseudo-Obstruction, Inc. is a great source of information on this disorder.
Email: asapgi@sprynet.com |
