Gastro
Esophageal Reflux
(GERD)
Gastro Esophageal Reflux disorder (GERD)
is very common in children with Hydranencephaly. On this page are links to
articles on GERD which are included in the book "Caring For Your Child With
Hydranencephaly"
The following info is from the University of Virginia This talks about
reflux in babies but most of the info also applies to children with severe
disabilities. It gives a really good overview of GERD, tests and possible
treatments.
Gastroesophageal Reflux in Infants
http://www.healthsystem.virginia.edu/internet/pediatrics/patients/Tutorials/GERD/GERD.cfm
Tests for GERD
Esophageal Manometry
http://www.cincinnatichildrens.org/health/info/abdomen/procedure/esophageal-manometry.htm
Gastric Emptying Scan
http://www.cincinnatichildrens.org/health/info/abdomen/procedure/gastric.htm
Having
An Upper GI
http://www.cincinnatichildrens.org/health/info/abdomen/procedure/upper-gi.htm
24 Hour
pH Probe Test
http://pediatric.um-surgery.org/new_070198/new/Library/24%20HOUR%20pH%20PROBE%20TEST.htm
Gastrointestinal Endoscopy
http://www.cincinnatichildrens.org/health/info/abdomen/procedure/gi-endoscopy.htm
Medications
used in the treatment of Reflux
Information on some of the more commonly
prescribed medications for Reflux in our children: I've set this section up so
that you can just print out the info on the medication your child is taking.
Cimetidine Oral
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682256.html
Ranitidine Oral
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a601106.html
Famotidine
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a687011.html
Nizatidine
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a694030.html
Omeprazole
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a693050.html
Lansoprazole
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a695020.html
Esomeprazole
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a699054.html
Metoclopramide Oral
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a684035.html
Surgery
Fortunately, it is extremely rare
for children suffering from gastroesophageal reflux to require surgery. In those
very few children who do require surgery, the most commonly performed operation
is called Nissen fundoplication. With this operation, the top part of the
stomach (the fundus) is wrapped around the bottom of the esophagus to create a
collar. After the operation, every time the stomach contracts, the collar around
the esophagus contracts preventing reflux.
This operation is very effective at
eliminating gastroesophageal reflux with long-term success rates approaching
90%, however, some children may develop very disturbing and debilitating
symptoms following fundoplication. The risks and benefits of surgery must
therefore be weighed very carefully.
Pros & Cons of the Nissen Fundoplication
http://www.geocities.com/fundofamilies/pros_cons.html
Fundoplication in Children
A Guide for Patients & Their Parents
http://www.ucsfhealth.org/childrens/edu/fundoplication.pdf
Open Vs Closed Fundoplication
http://www.geocities.com/fundofamilies/open_closed.html
GERD Nissen Fundoplication
http://www.columbiasurgery.org/divisions/surgical/gerd.html
Pyloroplasty
http://atoz.iqhealth.com/HealthAnswers/encyclopedia/HTMLfiles/900.html
Personal Stories of Children with Hydranencephaly
and reflux:
Daniel, age 8:
Daniel had his g tube put
in at 10 months of age. They did not do a nissen then. He started throwing up a
lot. He threw up on time into his trach during a trach change. I took him to the
surgeon, he sent him to radiology, they put the barium into his tummy and it
immediately went up instead of down. The radiologist yelled "sit him up and
empty his stomach!" It was pretty clear he needed a nissen. He has not had any
problems since then. I do have to vent him on occasion for gas. He has never
thrown up. Nancy R
Izzy, age 6:
I never knew Izzy had
reflux to tell you the truth. He never threw up and didn't spit up either. He
would get fussy if I laid him down after a meal. After a dr explained it to me
then I realized he needed to be elevated after meals and then he had his wrap
done. Things are all better now. Izzy's reflux never caused him to aspirate. He
only aspirated when eating or using a bottle...Michele
Heather, age 3:
My experience is the same as Michele¹s. By the time they checked for
reflux, we were doing pre-op testing. I just asked to have the fundo same time
as the g-tube surgery because of the experiences most of you wrote about that
said you needed the get the fundo just a couple of months after the g-tube
because of the aspiration and pneumonias. They did the testing to see if it was
necessary and they found a small instance of reflux in a fluoroscopy. Karen K
Noah, age 2 ½:
We have had a long struggle with reflux with Noah. When he was first born we
didn't realize he had hydran, but constantly vomited and screamed so we firstly
assumed that he just had reflux. We tried all the over the counter reflux meds,
but nothing settled him. Once he was diagnosed and he got the right meds
(seizure meds) he was a different boy, but was still refluxing all the time. We
kept him on different meds such as Mylanta and zantac and they worked OK for a
while, but it kept on getting worse.
We tried many things including raising the head of his cot to sleep, sitting him
up more, thickening his feeds, and also making his feeds smaller but nothing
really helped enough. By the time Noah was 2 he was refluxing so much that he
would bring so much and couldn't control it and would choke and aspirate many
times. Often during the day we would hear him vomit and cough and the next thing
we would know he would sound very rattly on his chest.
We did a milk scan to determine whether he was really aspirating, but at the
time of the test he showed definite reflux but no aspiration. We also did a
barium swallow. Finally we were referred to a pediatric surgeon who took one
look at us with our towel that went constantly with Noah and asked us why we
wanted to have a nissen fundoplication and we told him about Noah's chest
infections and straight away he agreed that he needed it done.
We are so glad that we have had the nissen done as Noah is no longer at risk of
aspirating from refluxing and is also experiencing a lot less pain. At the
moment Noah is still experiencing pain from gastritis which is inflammation of
the stomach, and we are trying to determine whether it is from refluxing still
(enough for it to occur, but not come all the way out) or from something else.
We have done a Ph probe and are going to be doing another barium swallow. So far
the Ph probe has shown that he doesn't have significant reflux any longer. Lisa
and Noah
Josh, age 5:
Josh suffered real bad with reflux until we got
him on Cisapride & Ranitidine together. He still had reflux but not as severe,
then Cisapride had its license revoked & it could only be given with parental
consent. With Josh being fostered we couldn't give consent & the SS wouldn't
owing to the risk of heart problems with Cisapride. So we tried all the other
reflux meds, then had the Nissen in April 2003, we can now see the benefit of
the Nissen its great not to have him screaming in pain. He still screams, but
that’s because he is a spoilt child LOL, actually BRAT sprang to mind before
child. The only thing we need now is something to make him sleep more than 2
hours.
Other pages in this section
Feeding & Positioning
Tube Feeding
Tube Feeding Experiences
Oral Feeding Experiences
Feeding Glossary
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