Re: FW: Reflux med ideas?

May 1, 2003

Based on s infusion experiences (not to great, terrible post

side effects), and based on the fact that she was still getting

repeat ear and sinus infections which was a huge part of her

childhood problems.

He felt she has severe acid reflux, which was traveling up her

esophagus, and into her ear & sinus canals causing constant

irritation, and therefore re-curing infection. WOW!!!!

Much love and prayers

Sharon Grubb

s Mom (prior PID child) Never thought I would be saying

this : - ) !!!!!!!

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Hi Sharon!

I am very " glad " that you found an answer to 's " problems "

I know of the shock that Acid reflux can be sooooo bad on a child!

My son Blake is 11 yrs. old at age 3 & 1/2 he had the Nissen

Fundolication done. He was on Zantac and Propulcid for a while when

his Pediatirc Pulmonologist agreed that his asthma was getting worse

(he still has and does to this day a degree of Broncopulmonary

Dysplasia from his extremely premature birth)so she ordered a barium

swallow to be done. Well when it was over and we went back to the

Drs. office she told us that Blake had a very severe case of reflux.

She told us that Blake was actually refluxing into the throat and

Larynx and it was " spilling " over not only into the lungs but into

the Nasopharynx. He also had a Hiatus Hernia that was pushing his

esophagus over the the left side. This was a huge reason for the

constant cough and and continuious stomach pain. Blake was also

refusing to eat. He could not eat with out vomiting. The pulmo. then

scheduled us with a Pediatric Surgeon. When asked if a Ph probe

needed to be done, the reply was No! We have all the info we need in

the barium study. "

Fast forward to the " Here & now " !!! We are once again dealing with

the Acid Reflux. We have been told that the medicinal approach os NO

LONGER an option for Blake. In Jan. he had a

Bronc/Larynx/Nasopharynxoscopy done under anesthesia(the ENT also

replaced a P.E.Tube and regraphed the eardrum in Blake's left ear.

While doing the scope, there were several nodes found on Blake's

vocal cords and his voice box was extremely raw. The pulmo also found

severa " spots " in Blake's lungs. While still in there the ENT took

the scope and placed it in Blake's esophagus. Together the Pulmo. and

ENT found that Blake had " Green gastric juice 'bubbling' " up in the

esophagus and it was past whrer the Nissen had been done 8 yrs.

earlier!!!! He is currently on Reglan 4 times a day and Zantac twice

a day. Not to mention the allergy meds he has been on over the years.

We have even tried the Prilosec( Blake is allergic to Red dye so we

had to break open the capsules and he poured the little " beads " on

his toungue and chased that with a glass of water). They were shocked

to find this especially since the child had NOT had anything to eat

since 10:00pm the nite before to prepare him for the study and ear

surgery. Sooooo, we are all waiting until Blake has a " CLEAN " blood

culture from the Fungus and bacteria in his Bllod(the las cultures

from last Fri. still showed he had Fungus still present, and the

surgeons will not touch him with a ten foot pole as long as the

cultures are NOT " CLEAN " ! He will have cultures darwn tomorrow.

The problem Blake is having is throat pain. Plus his PFT's have

really been horrible this past year. They are showing that he is only

using 19% of his lower airways and 35-40% of the upper. He tires out

very easily ahd contantly complains of stomach pain. Especially if he

drinks any milk product(he is protein intolerant and on Creon enzymes

for this and still is showing problems).Soooo, I believe it when the

Dr. tells us that Blake's reflux could be the main problem of his

asthma.

Another reason for the " rush " to have surgery done is because in

Mar '03 a bone density study was done on Blake and he was found to

have Osteoporosis(this we were told is rare in children). The

Endocrinologist believes it is due to all the steroids(oral and IV)

{and partially due to Heredity.})Blake has taken all his life. He can

not be started on the Meds. for this UNTIL the reflux is taken care

of. The meds. that work to help Blake build up bone mass could make

the stomach issues worse.

His immune system is a horse of a different color. He was not started

on IVIG until he was 7yrs. old He at that time did not have the

reflux because the Immuno. had a Ph probe done twice before Blake

started IVIG and the Pulmo also has done several Broncoscopies before

and after the IVIG was started. Soooo, with Blake it is totally

different as far as the Reflux and Immune issues.

I am very excited that feels alot better. I hope this renewed

strenght continues for her and you!!!!

(mom to Blake, CVID with Complete T-Cell Dysfunction,

Asthma,GERD, CAPD, Asperger's Syndrome, Developmental Delays(gross

and fine motor),Rare Blood Disorder that requires Lovenox sub.que

2X's daily, Osteoporosis))

May 5, 2003

My goodness , have you and Blake been through allot. s problems are

not near as severe. I learned much from you post regarding diagnostic testing.

I am trying to learn about this new phase in our life. I am amazed how bad

reflux can be. I appreciate your post.

God Bless

Sharon

s mom

this : - ) !!!!!!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hi Sharon!

I am very " glad " that you found an answer to 's " problems "

I know of the shock that Acid reflux can be sooooo bad on a child!

My son Blake is 11 yrs. old at age 3 & 1/2 he had the Nissen

Fundolication done. He was on Zantac and Propulcid for a while when

his Pediatirc Pulmonologist agreed that his asthma was getting worse

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

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May 8, 2003

Sharon:

Thank you for sharing 's story. What a wonderful outcome!! I love it

when doctors are willing to think outside the standard, accepted ways and

consider other possibilities. I'm glad is feeling better, too!

I had a question. Was getting sinus and ear infections secondary to

colds, or getting them out of the blue? I would think that could be a clue

indicating whether or not it's from reflux -- I'd think that could cause them

at any time and not just after a cold???

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy

intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

May 8, 2003

,

First let me give you a hug. Two cranky babies is enough for anyone!!!! I

don't know how you stay at home moms do it. I give you ALL THE CREDIT IN THE

WORLD!!! On days like those, I remember thinking I cannot wait to get to

Grandmas to drop off. (how shameful of me) . Working outside of the

home has it's challenges, but I think a stay at home mom works harder than

anyone!!!!!!

To answer you question... had repeat sinus and ear infections out of the

blue. She really did not have that many colds...., just repeat sinus and ear

infections.

Update on . Went to her ENT on Tuesday for her first checkup since new

diagnosis. I had this vision in my head, how we would walk into his office and

he would look in her ears and look at me and Exclaim with delight " What have you

been doing, her ears look GREAT!!! I would then proudly reply, guess what and

proceed to explain about her acid reflux diagnosis. WRONG!!!!!!!!!!!!!

Doctor looked in s ears and said they were still very much filled with

drainage, mucous and yuk!! I was devastated to say the least. It gets

worse.... I began to tell him about her acid reflux diagnosis, and how her new

immunologist feels it is contributing to her ears and sinus infections. WRONG

THING TO SAY. Boy did he get defensive!!!! Basically dismissed the entire

thing as ridiculous, but never offering an explanation as to why her ears and

sinuses are chronically infected. He was such a jerk, I almost walked out. He

asked us when the last time was when we used our ear drops. I told him about 3

weeks ago,, because we saw no visible drainage on her pillow or outside of her

ear, and told me her ears did not bother her at all. HE BLEW UP.

Starting yelling at me for not using drops, and just went off. I was in shock

and choked back tears. He basically said was lying to me , and

scolded her for lying to me and not telling me her ears were bothering her. I

sat there in utter shock. He threatened to yank these tubes out and put new ones

in , ..... unbelievable.

I attempted on 4 occasions to get him to address the acid reflux issue, and he

would not even answer back, like he did not hear me. He had his head down ,

would not look at me and kept writing on her chart. The only thing he said,

very sarcastically is " AND HOW IS THAT PRILOSEC WORKING FOR YOU? ARE HER EARS

BETTER? " !!! I replied, I thought they were until today.

Her immunologist told me to ask him about ear plugs in the shower for her tubes

, because he feels she should be wearing them. This ENT doctor doesn't believe

in ear plugs. SO when I asked him about it, once again BLEW UP. Like I am

supposed to know this stuff.... Excuse me , but isn't he the doctor, and isn't

that his job to address these questions. He said, you DO NOT NEED EAR PLUGS for

a clean pool, or clean shower water. It is only dirty water that I worry about.

He said it like duh , haven't I told you this already. Then he said he had a

meeting to go to and stormed out. The nurse saw how upset I was and came in to

the office and said " You know, you can have a pair of earplugs made

specifically for her ears at the audiologist office, but they cost $80.0. I

looked at her and said, " I would pay $800.00 if they work. Why hasn't anyone

ever mentioned this in 10 years. She replied, because most parents refuse to pay

that . I have tried every ear plug on the market, and they do not stay in

s ears. Her old ENT's were of the belief that wearing ear plugs with

tubes were necessary. This ENT is of the belief they are not necessary. Both

Immunologist have felt it warranted discussing, because they always asked me if

she wore plugs, and did I allow her to swim. They both felt strongly that she

should wear them. I was so upset when we left.

Called her immunologist the next day to tell him about s ears, and he was

soooo wonderful. He told me not to worry about anything, that he felt

responsible, as he should have instructed me to continue use the drops for at

least 3 months since there was still major inflammation.He said if we begin

using the drops by her appt next week we will see a huge improvement. He said

he would call the ENT if I wanted him to. I told him that would not be

necessary as I would never be back to his office. He said to me, that any

decent ENT would have referred to a different ENT that only deals with

the most difficult cases . He said there are specialists out there, that take

the toughest of the toughest cases, and if this ENT could not explain and

control her re-current infections, than he should have referred her long ago.

He was reluctant to say too much, but I could tell he was fumed. He reminded

me, " Sharon , how does feel lately as far as fatigue? " I thought

about it and said she isn't tired any more really, Just normal every day

fatigue. He then asked how has her stomach been feeling, and I replied , one

stomach ache in one month. Then he asked, how is her mental health, and outlook

on life., I replied, " She now says, when I used to be sick , when talking to

people " , and is very active. He said , OK do you feel better now. I wanted

to crawl through the phone and hug him.

Just a thought and I know it sounds very cynical but I am going to say it

anyways. Do you suppose that her ENT does NOT want to accept this acid reflux

theory, because of the impact it would have on his practice. Think about

it..... No more ear infections, no more tubes, no more revenue??? Just a very

cynical thought.

Sorry I went on again. This is my venting place and it keeps me sane. I know

so many of you out there are dealing with such more serious conditions, so at

times I fell like I am a big whiner. I just get so frustrated between all of

these different doctors with different opinions, and then getting raked over the