How to Know when it's time for a Feeding Tube

I am doing lots of research on the feeding tube just to make sure this is what is going to help matthew. I want to do what is good for him and so far I am still going to see the surgeon for a consult next Thursday. Sorry it's not formated correctly but I don't have time to fix it.. lo. Maybe later. This happpened when I "Copied and Pasted" it....

Evaluating a Child for Gastrostomy Tube Placement
Athos Bousvaros, M.D., Dept. of Gastroenterology,
Children’s Hospital, Boston, MA
allergy, or incorrect preparation
of formula. In these
cases, treatment with the appropriate
formula or medication
may increase oral intake.
Unfortunately, only a few patients
have an easily correctable
cause of malnutrition.
2. Is the child safe to eat by
mouth?
Some children may not be
malnourished, but are referred
because of respiratory symptoms.
These children usually
have a neurologic disorder,
such as cerebral palsy or muscular
dystrophy. When they
eat or drink by mouth, food
enters not only the esophagus
and stomach, but also the
lungs (aspiration), and nasal
passages (naso-pharyngeal reflux).
Typically, these children
have been hospitalized
for pneumonia and may also
have recurrent "bronchitis",
"asthma" or "sinusitis".
The aspiration is usually
diagnosed with a test called a
"barium swallow" or
"modified barium swallow".
While the test may demonstrate
aspiration, the decision
to place a G-tube should not
be made on the basis of the
test alone, but rather based on
the child's symptoms. At this
point, I often consult with a
r e s p i r a t o r y s p e c i a l i s t
(pulmonologist) to determine
As a physician who specializes
in the care of children
with feeding difficulties and
other intestinal conditions, I
am often asked to determine
whether a gastrostomy (Gtube,
stomach feeding tube)
will help a child. Parents
often come to see me with
anxiety. Many parents view a
G-tube as a "necessary evil"
which may help their child
gain weight, but which may
also isolate their child from
other children, as well as
limit oral intake. In some
cases, I recommend a feeding
tube be placed promptly,
while in other cases I recommend
no tube at all. To help
me make this decision, I usually
ask these questions:
1. Is the child malnourished.
If so, why?
While special needs children
are all unique individuals
with different needs, they all
have one thing in common:
nutrition is essential for their
proper growth and development.
Malnourished children
are at risk for infections,
bone fractures, and anemia.
A malnourished child undergoing
a surgery has decreased
wound healing abilities
and may experience
more complications. In addition,
normal children who are
starved have slowed development;
therefore, while it is
not proven, refeeding malnourished
special needs children
may increase energy,
alertness, and possibly improve
development.
I usually determine malnutrition
by reviewing a child's
growth curve, seeing if the
weight is appropriate for
height, and examining them
carefully. Most blood tests
are normal except in very severe
malnutrition. Most of
the time, the baby's underlying
disease (cerebral palsy,
congenital heart disease, prematurity,
chronic lung disease,
etc.) is the only cause
of the poor growth. Babies
with cerebral palsy often
grow normally in the first six
months, but as they get older,
their suck and swallow may
not keep up with their needs,
and they stop gaining weight.
Babies with congenital heart
disease or lung disease feed
normally at the beginning of
a feeding, but tire out by the
end of the feeding. Babies
with behavioral feeding resistance
(oral aversion) tend
to turn away from the bottle
before it even gets put in the
mouth.
Sometimes, I find a treatable
cause of malnutrition,
such as pneumonia, urinary
infection, gastroesophageal
reflux with esophagitis, food
skin infections around the Gtube
site. Because of these
risks, I tend to recommend
feeding tubes only to these
children who I feel will really
benefit, and who will need
supplemental feeding for a
long time. I also make sure
other ways of improving nutrition
(such as thickening
feedings or increasing calories)
have been tried.
After discussing all these elements
with parents, I find
most parents are prepared for
having a feeding tube placed,
assuming their child really
needs it. If parents are not
ready, I recommend further
discussion between them, and
ask for a return clinic visit so
that I can answer any questions.
Since a G-tube involves
a major family commitment, I
feel it is important that a family
believe it is in their child's
best interest before I recommend
the surgery. q
P a g e 3 M a r c h 2 0 0 0 T h e D e c i s i o n t o P l a c e a F e e d i n g T u b e
the severity of a patient's lung
disease.
3. Does the child need the
tube for medications?
Certain children with intractable
epilepsy or other conditions
may require a large
number of medications. If a
child with epilepsy starts having
seizures, he/she may be
unable to take their medications
by mouth. Lack of medications
in turn leads to worse
seizures. In these situations, a
G-tube may provide a useful
"safety valve" by which special
needs children can receive
their medications under just
about any conditions.
4. Do the benefits of a tube
outweigh the risks?
In the year 2000, the surgical
risks of placing a feeding tube
are relatively low. At Children's
the tube is placed under
general anesthesia, with a gastroenterologist
and surgeon
performing the procedure. The
risk of a serious surgical complication
of G-tube placement
(bowel perforation, bleeding)
is less than 1:100, and the procedure
takes under an hour.
Nevertheless, there are some
children (between 10-20%)
who may have problems after
the tube is placed. These problems
include vomiting and
Since a G-tube involves a
major family commitment,
I feel it is important
that a family believe it is
in their child's best interest
before I recommend
the surgery.
A Gastroenterologist’s Perspective ...
The MIC-Key button. Taken from the
Patient Information Guide from Medical
Innovations Corporation.
Commonly Asked Questions Regarding Tube Placement
Heidi Quinn M.S., RD, Feeding Team Coordinator, Children’s Hospital, Boston, MA
development. Your child’s
speech, occupational, or physical
therapist can develop an appropriate
oral-motor program for
your child.
What do I feed my child
through the G-tube?
There are many types of formulas
that can be given to your
child through the G-tube to meet
your child’s nutritional needs.
Your child’s nutritionist will
help you plan an appropriate diet
to meet the individual nutrient
and fluid needs of your child.
Vitamin and mineral supplements
may also be incorporated
into your child’s diet intake.
Can I put food through the Gtube?
Blenderized foods are available
as commercially prepared formulas
or can be made at home from
baby foods, juices, milk, baby
cereal or pureed foods. However,
preparation of home
blended formulas require careful
sanitary measures with regard to
foods and equipment used for
preparation, and monitoring by a
nutritionist for adequacy of calorie
and nutrient intake. Your
child's nutritionist can help you
develop the best diet for your
child. q
Parents have so many questions
and concerns as they consider
G-tube placement for their child.
It is a difficult decision often
filled with much anxiety. First,
let’s discuss some of the benefits
of G-tube placement, and
then address some of the nutrition
and feeding questions that
we commonly hear from parents.
What are the benefits of having
a G-tube placed?
Supplemental feedings via a Gtube
provide:
· Appropriate nutrients for
good growth and good health to
help fight infections.
· Fluid to meet hydration requirements
and ease constipation
difficulties.
· A safe feeding alternative
for children who cannot safely
feed orally.
· Help in reducing stress and
anxiety, for both caregivers and
child, due to long feedings with
often limited volume of intake
which are not adequate for
growth and good health.
· Reducing the number of
hours spent feeding allows more
time to do other things with your
child which are enjoyable and
less stressful.
What about using an NG-tube
instead of a G-tube for supplemental
feedings?
In general, NG-tube feedings are
recommended only as a short
term (i.e., 6-8 weeks) supplemental
feeding method. Prolonged
NG-tube feedings have been
found to contribute significantly
to the development of oral aversion
which can be a barrier to the
progression of oral feeding later
on.
Can my child still eat by mouth
if he/she has a G-tube?
If your child does not have safety
issues related to oral intake (i.e.,
Is not at risk for getting food or
fluid into their lungs), he/she can
and should continue to eat by
mouth. It is generally recommended
that they continue to eat
by mouth to promote both oralmotor
and feeding skill development
as well as to experience the
pleasurable social aspect of sharing
mealtimes. For some children,
safety considerations need
to be addressed, generally by a
speech-language pathologist or
occupational therapist who specializes
in oral-motor feeding issues.
Some children may be safe
with certain textures of food or
fluid, or very small volumes of
specific foods or fluids.
What if my child is not allowed
to eat by mouth?
There are many pleasurable activities
that you can do with your
child to help promote oral motor
K i d s w i t h T u b e s N e w s P a g e 4
A Dietitian’s Perspective ...
Commonly Asked Questions Regarding Tube Placement
Arden Hill, M.S., CCC-SLP, Children’s Hospital, Boston, MA
for an extensive period of
time. A G-tube is typically the
"tube of choice" for a child
who can tolerate feedings into
the stomach and is considered
the preferred tube for a
"partnership" with oral feedings
when the child is safe
and comfortable eating something
by mouth. The J-tube is
often recommended for the
child who cannot tolerate
feedings into the stomach (i.e.
vomiting with feedings and
compromising their health or
growth as a result).
Will my child need the tube
forever?
Some children need supplemental
tube feedings for fairly
short periods of time (i.e. 6
months), while others may
need them considerably
longer. The determining factors
are again safety and ability
to meet nutrition and hydration
with oral feedings.
How long does it take to
wean my child off of tube
feedings?
The time period greatly varies
from one child to the next. In
addition to safety and nutrition
factors, a child's medical
status plays a huge role. Often
there are interfering factors
such as gastroesophageal reflux,
necessary medical inter-
Why would my child be considered
for tube feedings?
If your child cannot safely
orally feed because food or liquid
is going into the trachea
and down into the lungs and/or
your child cannot meet their
nutrition or hydration needs
with oral feeding alone, tube
feeding might be considered.
How do I know how much
food or liquid going into the
lungs is too much (referred to
as aspiration)?
The truth is, no one knows.
This can be a very frustrating
answer to parents as well as
therapists. What we do know is
that food and liquid does not
enter the lungs in a child with a
normal swallow and that there
are many children who have
recurrent difficulties (i.e. upper
respiratory infections, pneumonias,
fevers, asthma, allergies)
when aspiration occurs.
How do I know what tube is
best for my child?
The decision regarding what
type of tube is right for your
child is really determined by
your core medical team. Typically
an NG-tube is considered
a short-term supplementation
system. That can have a negative
impact on a child's comfort
with their mouth and with oral
feeding experiences if it is in
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vention (i.e. surgery), ability
to integrate sensory information,
and common childhood
illnesses that can interfere
in a child's comfort
with oral feedings. When
there are interfering factors,
the weaning process can often
last a long time, even
years. In many children, as
these interfering factors become
less pervasive, the
process moves ahead at
what often feels like slowbut-
steady progress. The
ultimate goal of a speech
language pathologist is to
have every child feed orally,
but not at the expense of
safe oral feedings and/or
adequate nutrition and hydration.
Our job is to educate
and advise, but not to
make ultimate decisions
about your child's care.
Only your family, with the
support of your core medical
team, can make management
decisions for your
child. q
A Speech and Language Pathologist’s Perspective ...
May’s Story
mum requirement increased.
We took the data from the
log and charted it to illustrate
to the doctor our concern
about how her vomiting was
increasing in frequency. The
doctor felt the NG-tube should
only be a temporary measure,
and he started getting us ready
for the G-tube decision. After
6 weeks of the NG-tube at
home, we could never catch
up to that minimum required
amount by mouth. It was
clear that it was time.
Then May pulled a fast one
on us. She yanked out her
NG-tube, a common occurrence,
two days before her
scheduled surgery. The next
day, instead of getting the visiting
nurse over to drop the
tube back in, we thought we’d
see how well she’d bottlefeed.
She only had one day
before her surgery, so we
thought it wouldn’t hurt to try
it. Of course, she bottle-fed
very well that day. We gave
her regular strength formula,
which at 20 calories per ounce
was nice and watery and
thirst-quenching. She drank
almost all of her volume requirement
for the day. We
were ecstatic. We agonized
all day about whether or not to
go ahead with the G-tube.
Was this a fluke performance
or could she bottle-feed and
gain weight on her own?
We decided to cancel or at
least postpone the surgery. It
was a Sunday night, the surgery
was scheduled for 7 a.m.
the next morning, and the only
doctor on call was someone
we didn’t know. Talking to
him on the phone, we somehow
tried to explain the day’s
experiment, and how it made
us want to change our minds
about the surgery. The G-tube
sounded so invasive and scary.
I guess in the end we felt embarrassed,
and decided we
were just suffering from cold
feet. He talked to us patiently,
and finally convinced us to go
We resisted the idea of placing a
G-tube in our daughter, May, for
as long as we could. Due to
pregnancy complications, May
was born prematurely and small
for gestational age at 29 weeks
gestation and only 1 lb 7 oz. She
had no congenital problems, but
she struggled to survive with
respiratory distress, among other
typical preemie medical problems
which led to chronic lung
disease and failure to thrive. As
parents, we struggled with many
decisions over her care, but the
hardest one was the G-tube. It
seemed so foreign, invasive and
permanent, we hoped against
hope that we could come up with
a simple solution for a very complicated
problem.
In the NICU, May's doctor
occasionally floated the idea of
placing a G-tube. The nurses
disagreed with the idea and assured
us that she would bottlefeed
and grow better at home.
She languished an extra month
in the NICU while we tried to
get her to take all of her minimum
bottle feeds, but she always
needed to be supplemented by
the NG-tube. Finally, at over 4
months of age she came home
without the NG-tube and we had
expectations that she would soon
improve her bottle feeding.
The first six weeks at home
were distressing and exhausting.
May showed no improvement in
her ability to feed, and had slow
growth despite the 32-calorie
"rocket fuel" formula of breast
milk mixed with formula, polycose
and oil. We essentially carried
on her NICU schedule at
home: every four hours around
the clock we fed her, gave her
meds, took her temperature and
recorded her input and output in
a log. She had weekly hospital
visits for weight checks and
blood draws to monitor her electrolytes.
At six months of age,
and after six weeks of very slow
growth, she weighed in at only
seven pounds. We talked more
about the G-tube decision, yet
our Early Intervention therapist
was negative about it, calling
the G-tube "no picnic". We
had no contact with anyone in
the outside world who had
ever heard of a G-tube other
than our therapist and
medical professionals. We
agreed to use the NG-tube
again as an interim measure
before we had to face the Gtube
decision.
May had a terrible aversion
to anything going in her
mouth. We believe it came
partly from her history of a
long intubation and use of the
NG-tube, partly from having
to take the extremely bitter
tasting KCl (potassium chloride)
supplement by mouth,
and partly the thick formula
she had to drink. She would
only suck consistently on the
bottle while she slept. Awake,
it was always a struggle. We
didn’t know it then, but it was
an oral aversion that would
last for several years.
We started her back on the
NG-tube at home and she began
to pile on the weight. We
put her meds through the tube
so she didn’t have to taste
them. At the same time, however,
she began to develop
severe gastroesophageal reflux.
The vomiting went on
day and night. We would estimate
the volume vomited and
then re-feed that amount with
fresh formula. We tried to
continue the bottle and soon
began trying the cup. She
seemed to hate the bottle and
preferred the cup. The Early
Intervention therapist brought
us Haberman nipples, which
take less effort to suck. I
bought so many different nipples
and even ordered a case
of the same brand of nipples
she used in the hospital, always
hoping for a simple solution.
But she would not take
enough volume by mouth.
She became more and more
dependent on the NG-tube as
her weight increased and her
corresponding caloric mini-
K i d s w i t h T u b e s N e w s P a g e 6
ahead with the surgery. May was 7
½ months old, and weighed just
under 9 pounds.
May gained weight extremely
fast with the G-tube. In the first
month, she gained 2 pounds. After
a few months, she hit the growth
chart for the first time. Now using
a pump at night, we all got a good
night’s sleep every night, except
when she awoke to spit up. We
didn’t have to wake up every four
hours to feed her. The down sides
were hard. Vomiting increased, she
required a grueling daytime feeding
schedule because she could only
tolerate small boluses, and her oral
intake decreased to nothing at all by
mouth. But the medical implications
of weight gain and full nutrition
were obvious as she started
along the long road to physical recovery
and the race to developmentally
catch up with her peers. q
I bought so many different
nipples and even ordered a
case of the same brand of
nipples she used in the
hospital, always hoping
for a simple solution