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** This is my original document that I sent via email.
Infant Reflux
May 2002
Greetings!
If you’ve received this article then chances are you are
feeling a desperation that you have never experienced before! Let me first
say that YOU ARE NOT ALONE! Many have been where you are now and although
you don’t believe it, just as none of us believed it, IT WILL GET BETTER! So
sit back, relax, and read through this article and understand that there are
options and although it may take awhile to find the right combination for
your child, you WILL get there eventually and again, believe it or not, you
WILL have that happy baby you have always dreamed of!
Things were already a bit stressful before my first child even got here. I went into pre-term labor at 32 weeks. I
spent a week in the hospital and a week at home on bedrest before he finally
decided he couldn’t wait any longer. He was born a month early and spent a
week in the Neonatal Intensive Care Unit. He was breathing fine on his own,
but was having problems digesting his food. We finally got that going and
were prepared to take him home when he developed jaundice. He had to stay a
few days longer to remedy that and finally we were able to bring our new
baby boy home. Life would now be grand right?? Wrong!
Why was he screaming all the time? Why would he NEVER sleep?
Why was he so gassy? Why did he constantly keep his little legs drawn up in
pain? Why did he arch his back all the time? Why did he spit-up so much?
I was seeing a lactation specialist and I was describing the
symptoms to her. She picked up on it right away – REFLUX. Thus began a long
process of working with the pediatrician and finally, working with a
specialist, to handle this diagnosis for why my baby was always so
miserable. It was a grueling process at times, but we stuck with it and
eventually saw the light at the end of the tunnel.
The only basis for any of my information is “BEEN THERE AND
DONE THAT”. I’m not a doctor, so everything I know is from experience and my
own research. So take everything here with a grain of salt. The purpose of
this document is to simply say, “Hey, here’s what worked for us.” And also
to make everyone aware of a couple of products out there that we used with
success.
I think the best way to start my article on Infant
Reflux is to include my original post to a pediatric medicine board
regarding my son and his symptoms.
July 4, 2001
“Hi, I am convinced my 6 wk. old baby boy has reflux. His
symptoms and behavior even led me to believe that he possibly had pyloric
stenosis, where the muscle between the stomach and intestine closes off the
passageway, resulting in reflux.
He had a barium swallow x-ray yesterday that yielded no
obvious problems, abnormalities or “immediate” reflux.
However, he fits all the descriptions of having reflux.
Arching, stretching legs, turning head, taking three sips and screaming,
taking a long time to eat, projectile vomiting, hiccups, throwing up with
every bottle (sometimes when burped, 5 minutes later, up to an hour or more
later), and so on. He can be sound asleep and then he will suddenly jar
awake, scream and then throw up.
We are on our fifth formula – Nutramigen (expensive at $8 a
day…). He is also on .6 ml of Zantac twice a day. We tried the rice cereal
but that made the throwing up worse. The doctor does not plan on giving him
any other medication at this point and has said to continue with Nutramigen
and Zantac. This protocol is not working.
My problem is that he is still gaining weight and gaining
weight nicely. This seems to be the indicator which determines whether
further treatment is necessary. However, this doctor does not have to live
with my baby 24 hours a day and listen to his blood-curdling screaming!
I am desperate, as I continue to read post after post
regarding breathing difficulties ( he wheezes now )later on and worse
things.
How do I convince the doctor that he has reflux if the
barium swallow did not show “immediate” reflux?
Are there specialists for pediatric gastro problems? I’m
thinking of videotaping my baby and showing that to the doctor and asking
her to give me another explanation for the pain and screaming, if not
reflux.
Sorry for the long post, but this is my first stop in trying
to find more information. I would appreciate any help/advice that you can
provide.”
It’s amazing to read that original post – I can feel the
desperation that I was in at that time! I felt so helpless. I just wanted my
little newborn baby to live one day without agony! A little over a month
after I posted this message, I got an email from a parent asking if we had
made any progress. Here is the reply that I sent to her. ( Her comments are
in bold. )
August 22, 2001
“Hi,
I’m so sorry to be so long in getting back to you. As you
know, babies with reflux take lots and lots of time! I don’t get much time
to email.
[I have a 2 1/2 month old girl she has infant reflux and
every bottle she will eat some stop and cry, eat some more stop and cry..
then most of the time after her bottle she will cry for the longest time she
will arch her back, throw her head back, and get real stiff and just scream
her little eyes out.]
The reason she cries while she is eating is that her throat
is raw from the acid that refluxes into her throat. My son went through this
and I just knew that something had to be hurting his mouth or his throat or
something because he would be so hungry and mad, yet when he would take even
one sip, he would scream. It was SO frustrating!
And he was forever arching his back as well. Again – PAIN.
[I have tried putting her on rice cereal with her milk, i
have tried baby food with
her milk, I have tired Mylanta for children, Tylenol, I have
tried holding her close to me real tight and that dont seem to help at all
either.. it seems as everything i do wont help her any is that true?]
I know it seems like nothing will work but the trick is to
find the right combination of things and unfortunately, it’s just trial and
error because every baby is different. My son is 3 months old and we have
just now figured him out to some degree such that he is sleeping better, has
a better disposition, eats really well, smiles – basically he’s starting to
act like a “normal” baby.
We tried every formula under the sun. One would make him
extremely gassy. Another would make him vomit during the feedings. It went
on and on. We finally ended up on Enfamil Nutramigen. A nice $8/can!! He was
a can a day, and now a can doesn’t even last an entire day, so it is very
expensive. We kept trying new formulas for the gas – turns out the reason
for the gas was not the formula and we could have changed a million times
and never seen a difference. ( However, there would always be what I called
a “honeymoon” period with each formula. For 2-3 days it seemed like
everything was better and then everything would fall apart.)
My son had an Upper GI/Barium Swallow x-ray which indicated
nothing but a possible narrowing between the stomach and lower intestine. It
didn’t show what they call “immediate” reflux when the formula immediately
comes back up. Well I already knew his reflux happened after he ate. And
then after having this test, the barium made him constipated and his bowel
movements have not been the same since. He was having multiple ones a day
and he’s just now getting back to having one a day. He was having one every
4-5 days. It was awful.
My pediatrician prescribed Zantac. It neutralizes the acid
in the stomach so it doesn’t hurt as much when it comes back up. When we
would give it to him he would scream. I think it was burning his already
sore throat. And his worst spit-up times were immediately following the
Zantac. After a complete meltdown one night I made the mommy-decision to
take him off of it.
In the meantime, my pediatrician and I were at odds about
what to do so I saw another doctor in the group. She officially took him off
Zantac and prescribed Prilosec. This drug actually prevents the stomach from
even making the acid. She also ordered him an apnea monitor ( monitors
heartrate and breathing ) so he could sleep on his stomach which was the
position he was most comfortable in. ( There is a scientific explanation for
why this is the best position – but most peds say not to let them sleep on
their stomachs because of SIDS, but while on the monitor, his heart rate and
respirations are being monitored, so this allows him to sleep on his
stomach. ) This new doctor also suggested he see a pediatric GI specialist.
Let me tell you – DO THIS IMMEDIATELY! Have your ped refer
you to a specialist. Only then did we get on the right track.
The specialist agreed with the Prilosec instead of the
Zantac and even upped the dosage. He also said for us to use Gaviscon
instead of Mylicon drops. He also said that the Prilosec needed to be given
in a chocolate-base liquid. This was quite an ordeal but I found a product
online called Choco-Base and it is specially made for the Prilosec. Not only
does the chocolate make it taste better but the Choco Base is formulated to
make the Prilosec work better.
He also ordered an abdominal ultrasound which was negative
for pyloric stenosis ( read about this online ), just as the xray was. So
that was good. It showed that the stomach was slow to empty, which is
ultimately my son’s problem.
I had to make the decision of whether I was ok with the
spit-up as long as he was comfortable or if I wanted to stop the spit-up. To
stop the spit-up he would be put on Reglan. However, Reglan has a lot of
side affects. So I opted to make him comfortable.
So that’s when we got on the Prilosec and Chocobase/Gaviscon/Nutramigen
routine. He also suggested that I try adding rice cereal to thicken the
formula. My son CANNOT handle the rice. He gets fussy, extremely gassy,
vomits more. We’ve tried it three times and it doesn’t work for us.
Then we realized that now that he was able to eat more
comfortably that he was hungry so the doctor said he could have 5-5.5 ounces
of formula.
He said the gas was from the baby being irritable and crying
and swallowing air and not from the formula so he had him stay on Nutramigen.
As I said, my son is now 3 months old and just within the
last few days have we noticed a huge difference in him. I think we finally
have him figured out as best you can with a baby with reflux. But it took 3
months of trial and error to get it right.
But again, the key is to SEE A SPECIALIST!!! They know more
about reflux than the peds do. And please don’t try anything on your own
without first consulting a specialist. They will want to try things in a
certain order or perhaps rule out any anatomical reasons for your baby’s
problems.
I hope I have helped you. OH! We also ordered him a […] reflux wedge and sling that allows him
to sleep on his stomach at an incline. This really helps when he spits up at
night. Before while flat on his stomach he would wake up wheezy, now it’s
much better.
Please feel free to ask me any more questions. I’m just
sorry I couldn’t respond to you sooner because I understand the desperation
you feel.
Good luck and let me know how it’s going. I’ll be glad to
support you in any way I can. Us moms of reflux babies need to help each
other stay sane!!!”
Even after this post in August we continued to make
progress. By the time my son was four months old, we finally had a happy
baby who even started sleeping through the night! It was a long struggle,
but we finally found the right combination of things that worked for him.
Here is a summary of my son’s “protocol”, as I call it:
GI SPECIALIST – The first thing we did that got us
on the road to recovery was to see a pediatric gastro-intestinal
specialist. I feel like this was the critical first step in heading in
the right direction. The specialist knew more about possible treatments
than our pediatrician did. He was able to make a diagnosis faster as
well. From the moment we walked into his office it was all progress from
that point forward.
PROCEDURES – Although my son had already had the
barium-swallow x-ray before seeing the specialist, he ordered an abdominal
ultrasound just to cover all the bases. Both the x-ray and the ultrasound
were negative for any obvious defects. The final diagnosis was a “delayed
emptying of the stomach”, possibly due to a small narrowing in the tube
between the stomach and the intestine. This was an important step in
determining how to go forward.
DECISIONS – Once a diagnosis was made, the specialist
presented me with a decision. He wanted to know if I wanted to stop the
spit-up altogether or if I just wanted to make my son comfortable. He
explained that the medicine for stopping the spit-up altogether could have
it’s own side effects. I was not prepared for any “new” problems and
basically told him that I didn’t care how many loads of laundry I had to do
everyday that my main concern was keeping my baby from hurting. Once I made
this decision, we moved forward on what to do.
MEDICINES – At this point we had already tried the
Zantac with horrible results, so the specialist decided to put my son on
Prilosec. He said that the Prilosec should be very tolerable with little
or no side effects. The Prilosec would inhibit the stomach from making acid,
so that when my son did spit-up, it would not be painful as it was before.
The Prilosec is the same medicine given to adults. The pharmacist just
breaks open the caplets and compounds the pellets and puts them in a liquid
suspension. The specialist recommended that the Prilosec be given in a
chocolate-flavored suspension. He felt that the chocolate flavor would be
more palatable than the other flavors. Well, I called all over town and I
could not find a pharmacy anywhere that had a chocolate-flavored suspension.
The doctor suggested that I have the Prilosec put in a plain suspension and
then mix it with a few drops of Hershey’s syrup! This proved to be very
messy! I wasn’t sure of the best method to mix the chocolate and medicine.
And if I traveled, I had to take a bottle of Hershey’s syrup with me! So I
searched on the Internet to see if anyone had any suggestions. I found a
wonderful product…
CHOCOBASE– My search on the Internet brought me to a
website for ChocoBase. ChocoBase is a product that has been developed to aid
in the administration of medicines such as Prilosec for infants and children
or adults who have problems taking the pill form. The idea was that the
Prilosec pellets would be compounded into the ChocoBase powder and that
combination would be mixed with the liquid suspension. No more Hershey’s
syrup! I contacted the specialist and he gave me the go ahead to try this
product. I was fortunate that my best friend’s father was the pharmacist at
our local drug store and he went to the website and downloaded the
instructions on how to purchase the ChocoBase and how to compound it. But
any pharmacist should be able to go to the website and register to purchase
the product. We saw a
noticeable improvement in my son when he started the Prilosec with Hershey’s
syrup, but once he started the Prilosec with ChocoBase, it was almost an
instant turnaround. The screaming stopped, the spitting up decreased
significantly and the sleeping and smiling began! And when he did spit-up,
it did not hurt him like it did before.
[UNFORTUNATELY, CHOCOBASE IS NO LONGER
AVAILABLE.]
SLEEPING ON STOMACH
– Even though the medicines were
kicking in, my son still seemed most comfortable, and slept the longest,
when on his stomach. Because of this, the pediatrician ordered an apnea
monitor to monitor my son’s heartrate and respirations while he was
sleeping. We were supposed to put him on the monitor every time he slept,
but we eventually just hooked him up to it at night. We had our initial
issues with the monitor and on occasion had horrifying false alarms that
woke us up in the middle of the night ( the alarm siren is LOUD! ), but I
cannot tell you what a relief it was going to bed at night knowing that if
something went wrong that the monitor would trigger an alarm. Not only was
the baby finally getting sleep, but so were we!! He stayed on the apnea
monitor until he was 7 months old.
Since the Prilosec was not completely preventing my son from spitting-up, he
would occasionally spit-up during the night. I would find him the next
morning in a pool of spit-up and he would often be wheezing to some degree.
I finally couldn’t take this anymore so I decided to purchase a product that
I had ran across during my Internet research…
REFLUX WEDGE/SLING – When I first read about the
Tucker wedge, I was hesitant to try it because it was SO expensive!
But I finally decided that it was a necessity. The purpose of the wedge is
to allow the baby to sleep on an incline. This position has been proven to
be the most beneficial for babies with reflux. The wedge is simply that – a
foam wedge. The Tucker sling fits over the wedge to hold the baby in place.
It is basically a big Velcro diaper! This was a critical purchase for
getting my baby to sleep through the night. Once he started sleeping on the
wedge, if he had a burp/reflux during the night, it would not come all the
way up and disturb him. And no more waking up wheezing! He would still have
an occasional spit-up at night, but because he was on an incline he was
usually able to sleep right through it. He slept on the wedge, on his
stomach, hooked up to the apnea monitor. I believe the size we bought would
support him until approximately 19 lbs., but we eventually had to take him
off of it because he got too long for it! We were able to keep him on it
until he was 6 months old.
OATMEAL – Another thing the specialist had us do was add
rice cereal to his formula. The purpose of this was to thicken his formula
to help it stay down better. Well, the rice cereal made him SO gassy and
miserable, so we switched to oatmeal and that did the trick. We would add it
to his morning and nighttime bottles. As soon as we added it to his
nighttime bottle, we noticed that he would sleep even longer through the
night.
FORMULA – We went through EVERY formula!! The
pediatrician kept switching it thinking that the formula was making him
gassy. The specialist explained that it was not the formula making him
gassy, it was all the crying he was doing because he was so uncomfortable.
However, he did recommend that we stay on Nutramigen. It is broken down
further than regular formula so it makes it easier for the baby to digest.
He stayed on Nutramigen until he was about 8 months old and then we went to
Similac with Iron without any trouble.
GAVISCON FOR GAS – We had been using Mylicon drops for
the gas and eventually got a prescription from the pediatrician for
something more powerful, but it didn’t help at all. Then when the specialist
explained the cause of the gas – the crying – he suggested that we give him
Gaviscon as needed, but predicted that it would eventually no longer be
necessary. He was right! We were able to decrease the Gaviscon over time and
eventually gave it up altogether. Gaviscon is available at the drugstore in
the antacid section. It really helped with the gas.
NEW! – I finally found the doctor’s original
notes regarding the amount of Gaviscon to use. His notes say, “Gaviscon
ES 0.6 cc before feeds 6x”. So apparently we were to give him 0.6 cc
before each feeding, up to 6 times a day. I seem to recall some cases
in which we gave him up to 1 ml, but only when he was in a lot of pain in
the beginning. DISCLAIMER: This is
the regular adult Gaviscon, so as with any medicine, please consult with
your doctor on the proper dosage for your child!
HUGS, HUGS and MORE HUGS! – I sort of listed these items
in order of importance in my opinion, but this one should really go first!!
We held my son for hours on end. We picked him up when he cried and consoled
him. We rocked him. We walked him. We held him. We never let him “cry it
out”. My mother and grandmother cited references to my husband (who thought
my son was going to be spoiled) which indicated that a baby less than 6
months old could not be spoiled. (And besides, he would have been spoiled
anyways…. ) I’ve read several articles that suggest that the baby just has
to “cry it out”. My feeling was that if my baby was crying, then something
was hurting. So we did everything we could to let him know that we
were there and it was going to be all right. We read that babies that were
held more were happier later on. Well, let me tell you, it worked! We have
the HAPPIEST baby! People comment all the time about how happy he is. You
can’t imagine how proud that makes me feel. I feel proud because we worked
really hard to enable him to be a happy baby. So I know all the hard work
was worth it.
I don’t mean to suggest that this is the perfect plan for
everyone. Every baby is different and what works for one may not work for
another. I just want to let everyone know what worked for us in case all or
part of my son’s plan may help others. And again, I want to stress, please
don’t try any of this without consulting a specialist first. The specialist
will want to try things in a certain order or perhaps rule out any
anatomical reasons for your baby’s problems
Our baby just turned 1 year old a couple of weeks ago. He
has not outgrown his reflux completely yet, but now that he is upright more
often, it’s not as bad. Solid foods helped a little, but walking has helped
the most. Learning to crawl was a difficult phase because he spent so much
time on his stomach. Difficult only in the sense that he spit-up more, but
he was always comfortable. He has been off of Prilosec for about a month
now. However, we have used it intermittently while he’s been teething. All
the chewing on whatever he could find would tend to make him spit up
sometimes.
Looking back, I realize that he was about 4 months old when
everything finally fell into place. He was 2 months old before we saw the
specialist, so we got a late start. But even by the time he was 3 months
old, things were already better. In his journal, he was 3 months old when I
wrote, “He is really starting to do better. He is sleeping longer, sleeps
after he eats, sits in his swing and falls asleep. It’s just great finally!”
So just be patient and find a good specialist to work with and you will get
there.
I hope you will find this article to be beneficial to you.
If you have any additional questions, please feel free to ask!! I would be
glad to help in any way that I can. Below you will find the website
addresses for the products I mentioned.
Hang in there and best wishes to you all for a happy,
healthy baby!
ã 2002, InfantReflux.Org.. No part of
this document may be reprinted without my permission.
Last updated: Jan 20, 2012.
