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Parker was born by elective cesarean at 39 weeks though it
is believed that he was only 37 weeks. He came into the
world strong, healthy and beautiful, but the pediatrician
thought he would need the humidicrib but he he got stronger
and stronger and never needed to. We ended up staying in
hospital for 10 days as he wasn't gaining and had some
jaundice and were only allowed to go home with follow up
visits to the pediatrician.
He started gaining, probably because all though I breastfed
I was topping him up with formula and he started to thrive.
He was going great till about 4 weeks when I assumed he had
colic like my first son, he would go hours crying (that
would gurgle in the back of his throat), arching, hiccups
the list goes one, it got worse and worse and by 6 weeks I
knew this wasn't colic. I rang a friend who's child had
reflux and I described everything to her and she said it
sounded like silent reflux. I never knew that there was such
a thing as reflux without vomiting. I went to the doctor
armed with this information and asked for zantac. He
reluctantly gave it to me and it made a lot of difference,
well at that time less screaming was a lot of difference!
He was still unsettled, we couldn't drive with him, he slept
badly, so much so that I had to move out of my room onto the
couch so at least one of us got some sleep. I still did not
think anything of it, all I knew of reflux is that children
had zantac and they grew out of it by age one.
I went to many doctors saying that it must be something more
because he was still very upset a lot, but he was still
gaining weight so no one was too concerned. At 7 months, was
our first inking that something wasn't all that it meant to
be, he developed sleep apnea, which was picked up by our
movement monitor, without that we would never know, a sleep
study (which I had to beg for and the process to see the
specialist and the study meant we didn't get these results
till he was almost one) showed that he did indeed suffer
from apnea.
At about 8 months though, was when everything for us went
downhill. Prior to that he was a great eater and I did not
know that he was comfort feeding. He started to realize food
meant pain, so he stopped, it was like overnight, good
feeder to nothing. He would go a day or so without a wet
nappy, and again I would take him to the doctor and they
would say he is a good weight, one actually called me
overprotective. He wasn't gaining weight anymore, but
continuing to do all right with the 'curve' because he had
weight stacked on by the overeating.
By 11 months we weaned him from the zantac (after
unsuccessful times in the past), and that's when all day
screaming ensued. I kept telling myself that it couldn't be
reflux as all babies outgrow it by 12 months. I enabled my
mums help and went to a doctor I had never seen before and
cried that there was something wrong and no one will do a
thing about it. He put me onto a pediatrician (over here
pediatricians are not the norm for children) who also said
that it wasn't reflux, though he was very diligent and
tested him from head to toe,
By this time he was 13 months and hadn't gained in 5 months,
he had dropped from over the 75 percentile to just under the
10 percentile, he was then labeled failure to thrive. I was
afraid he was going to starve himself as he ate nothing in a
day. I had stopped breastfeeding at 9 months in the hope
that a bottle will be substantial calories but he has
refused every bottle except the one when he first wakes up
ever since.
We were given prevacid which we had to stop soon after as he
screamed more and we ended up in the ER. The pediatrician
authorized blood tests, urine tests, treatment for his fifth
back to back ear infection, x rays and an abdominal
ultrasound STILL they did not think that reflux could be
producing his symptoms. The ultrasound picked up some
swelling in his abdomen, and some inflamed lymph nodes and
an enlarged ileum, this indicated inflammatory bowel
disease, so we were granted a referral to a pediatric GI
(again not something many kids get over here)
At this time I joined IRD and knew then that kids don't
always grow out of it and it is possible he was suffering a
bad case of GERD. At the GI we were ultra sounded again,
more x rays, an upper GI, more blood tests an endoscopy and
a pH probe, which came back with heaps of reflux episodes
and finally after 14 months we had a diagnosis, even the GI
was surprised at how much reflux he had. We were put back on
zantac as I was afraid to go on prevacid again.
When we went back at 16 months, he still wasn't gaining well
and we trialed losec. WE LOVE LOSEC, this is when his life
started to turn around, his feeding improved dramatically
and he started putting on weight again. In the 10 months
that followed we stayed on the losec increasing it as
needed. All the things that were a problem just started to
disappear. We tried a few decreases of medication every
couple of months and the reflux would return with great
gusto, so we would go back on the losec even increasing the
dose and the symptoms would subside again.
When Parker was 26 months, only 2 months after the last
trial wean, we weaned him again as per the GI's
instructions, this one was to be a full one, so that we
could get re-tested with the pH probe. I was extremely
apprehensive about this, as he had not been totally
unmedicated since the last testing a year ago.
Well the great news is that he did fantastic with the wean,
it was so different to all the other attempts and so far he
is doing great. The probe came back as minimal reflux a huge
improvement to last time and we have decided at this stage
to not medicate him. He is still doing things that make me
wonder if the reflux is bothering him still and I suppose
only time will tell if we have really beaten this thing.
As you can probably tell I feel that the doctors played a
large part in Parker reflux being so out of control and
causing so many problems, they did not listen to what I had
to say and trust that I knew that this was not right, if we
were given the proper medication and treatment early on I
don't think we would have had all the problems that we did.
Our reflux journey contained a lot of ups and downs.
In Parker, reflux has caused FTT, food aversions, excessive
myclonic jerks due in some part to medication, ear
infections, which lead to deafness for 5 months, and delayed
speech, pneumonia, sleep apnea, aggression, an older brother
who is now trying to deal with the emotional aspect of
having less time and attention spent on him. Daniel and I
are also unsure if we will be having any more children as we
don't know if we could go through it all again.
Describing how a thing like 'a little reflux' could change
your life so much is quite hard, a lot of people do not see
how much it can impact your child and your families lives
and you get tired of people not understanding this. I feel
that we are very lucky to be having so much success lately
and just hope it keeps going that way.
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