Well, I guess this list was just inactive. How many people are on the list?
Maybe we could all introduce ourselves & our children. This seems to be the
ONE & ONLY list for older children. I hope it gets active again.
I will start by introducing myself. My name is Patricia & I am the
mother of 3 boys. Joseph is 13, Richard is 11 and Brandon is 6. Joseph &
Richard are relatively healthy. Brandon on the other hand is another story. I
am a LVN (Licensed vocational nurse) & preschool teacher. I have just
returned to nursing after being a teacher for 4 years. We live in Anaheim,
California.
Brandon has GERD,delayed gastric emphtying,asthma,sinusitis & is anemic.
The story is long & drawled out. But basically he was diagnosed with GERD as
an infant as well as with asthma. He has had many a pneumonia & bronchitis.
He was on zantac/tagamet/propulsid/reglan etc...as an infant. He has had a
bronchoscopy (twice), endoscopy (twice),Upper GI (twice),Ph probe (once) and
the test to show his motility problems. We were told that when he was about 3
years old that his reflux was gone. He supposedly had outgrown it. Little by
little we stopped the meds. He has always had lung problems though.
In June of this year he came down with a HORRIBLE cough. It was
diagnosed as croup that turned into laryngotracheal bronchitis that turned
into pneumonia. They thought he had TB or whooping cough or maybe cystic
fibrosis among other things. After being sick for WEEKS and on MANY
antibiotics and missing that last week of school and almost missing his
kindergarten graduation (I took him to it sick and all)
they decided to admit him to the hospital. He stayed in the pediatric
intensive care unit for 8 days. They finally sent him home still
sick,coughing,fevered,having stomach aches & headaches, because they could
not figure out what else to do for him except let "it" run its
course...whatever "it" was. This continued on at home. I had started to do
research on the WWW out of frustration. At first I focused on lung diseases &
conditions. While researching causes for chronic cough I came across reflux.
Reflux...as a cause for chronic cough??!! Suddenly it all made sense! All the
pieces fit together. All his symptoms...even when he was in the hospital. So
off to the pediatrician we went. Of course he disagreed.Saying that "Reflux
is a baby condition. You outgrow it as an infant...by 6-8 months of age" I
knew that was not true though. So I persevered (It was NOT easy) and reminded
him that Brandon had reflux until he was at least 3 years old...maybe longer.
And in his pH study his reflux & cough were "significant & correlated". When
he refluxed he usually coughed! So against his best judgment he decided to do
an Upper GI. Saying it could not be reflux..but he would do it anyways.
Well...when we got the results..Guess what !
Reflux!! Moderate to severe. Also delayed gastric emptying showed. And he
coughed at times when he refluxed. So now..after a long struggle for an
updated diagnosis we are now on Zantac,Propulsid & Maalox. I think & am even
90% positive that he has had this reflux all along. I don't think it ever
went away. And I am all but 100% positive that this severe cough he had from
June to recent (still coughs some even now) and that landed him in the
hospital was a result of the reflux. It angers me to think though, that with
all the tests that they did related to his lungs that NO ONE thought to check
for other causes...like reflux. Even though they all knew his history. They
were so focused on one area they ignored the others.
On 8/11/99 he had his tonsils & adenoids out and ear tubes put in. This
was all but a nightmare. To shorten it I will say that the first week after
surgery he was still not on any reflux meds. (He had just had the upper GI 2
days before surgery & the results were not in yet) He was having severe
reflux & was in constant pain. The acid was burning his throat & recently
removed tonsils. He could not talk for over a week. He lost 8 lbs in 7 days.
He dehydrated & refused to eat. The doctors & nurses blamed him. Saying he
was being a baby & could eat if he wanted. Blamed me for not forcing him. Not
believing he was in so much pain. In my heart I knew what was wrong. I could
see it. The reflux,the chest pain & grabbing his throat & screaming. The
coughing. Finally after 5 days of agony we got the GI results & started him
on reflux meds. It has made a huge difference. His tonsils are healing. He is
talking. He is still not eating to great, but we are getting there. He is
still coughing & having stomach aches, but it's a start.
It makes me want to get an apology from the DR. who said it could NOT be
reflux and from the nurses who said he was NOT really in that much pain. He
was in so much more pain than most kids are after having tonsils out that
they just blamed him & his so called "low" threshold for pain.
Anyways...that brings you up to date on Brandon. Sorry this was so
long,but I needed to vent & wanted to share with someone. Please let me know
your child's story. How were they diagnosed ? What were/are the symptoms?
What meds are they on ? Is this new to them or has it been since they were
little ? I have no contact (except one) with anyone who has an older child
with reflux,so I am really looking forward to hearing from you all.
Meanwhile...I will continue with my researching for answers & educating
myself.
Bye for now...Patricia & Brandon