Re: Results of 24 hour pH test

[Guest guest]

Jane,

What a grueling day for you and Kate. I'm glad that it is behind you

and that Kate does not have reflux.

Gale

> Hello all,

>

> I received so many gracious replies to my request for info about

the 24

> hour pH test (thanks for the input!), so I thought I'd update you

on how

> it went for Kate.

>

> The placement was horrible. I didn't think it would be fun, but the

> only thing worse that we've experienced is the placement of her PICC

> line when she was three (no sedation.) Kate took her Versed

(sedative)

> really well. It was yummy cherry syrup. This really relaxed her,

so

> that she was calm while we waited and waited. There was a problem

with

> the paperwork, so we waited over an hour after she had taken the

Versed.

> Then, when the nurse was finally ready, she informed us that she

> couldn't find any lidocaine jelly (that I requested), so all we had

to

> use was regular lubricant. After the third attempt - switching

nostrils

> after a nosebleed - the tube was placed. It took two people to

hold her

> down and she screamed and screamed and screamed. And then she

hacked up

> some blood (nothing serious, but ugly) and gagged a lot. So then we

> waited for the portable x-ray to make sure the tube was placed

> correctly. This is where the Versed was wonderful. Kate really

calmed

> down quickly, and mildly watched TV and sniffled. The x-ray results

> indicated the tube needed to be in a bit further. More screaming.

> After that we ran out the door!

>

> After we left the hospital, we immediately got a cherry icy. Kate

drank

> it down quickly. And she drank a lot over the next few hours - it

> really seemed to help her throat and reduce the gagging. She was

> hungry, but every time she started eating, the tube would move in

her

> nose a little and she would start to cry, and that would be it for

the

> food. The foods that did work though are just what you would

expect:

> pudding, jello, soup, shakes, etc. As long as she wasn't eating she

> felt good. She was easily distracted with some new toys and rented

> videos. And mercifully she was able to sleep great!

>

> The removal was quick and painless. The only thing Kate complained

> about was the removal of the tape on her face. And she got to keep

the

> tube - a little trophy of sorts! :-)

>

> All in all, I think it's a nasty test for little ones. If your

child

> has to have this done or an NG tube, I have three strong

> recommendations. First, get the Versed or some similar sedative -

it

> really helped Kate's recovery. Second, before giving the Versed,

make

> sure the nurse has all the necessary paperwork - you don't want it

to

> wear off before the placement. And third, get your hands on some

> lidocaine jelly to bring with you (a prescription or samples or

> something.) Sticking the tube into the inflamed nasal passages of a

> child with CF is going to be painful; the lidocaine could have

really

> helped. Those of you who have visited an ENT may have seen the use

of a

> nasal spray local anesthetic - that could be wonderful too, but Kate

> hasn't used that yet.

>

> Now the results: Kate does NOT have reflux. Her doc was very

surprised

> at how normal her results were. He diagnosed her with reflux after

a

> sample taken during a bronchoscopy showed fats in the macrophages.

> (It's my understanding that macrophages present a primary immune

> response to foreign bodies - bacteria, viruses, etc. See

> http://www.people.virginia.edu/~rjh9u/macro.html and

> http://nic.sav.sk/logos/books/scientific/node21.html .) The

presence of

> fats in the lungs normally indicates aspiration of stomach contents.

> However, Kate had no symptoms of reflux (other than a nagging cough

> which brought about the bronchoscopy.) So, the doc diagnosed

reflux and

> prescribed prilosec and reglan. After reading about reglan and its

side

> effects, I balked. I talked to the doc and asked how we might know

if

> this treatment was working, etc. He eventually talked himself into

> having the pH test done. Now - why are there fats in her lungs if

she

> doesn't have reflux?! According to one of Kate's other docs at

clinic

> (used to work at Chapel Hill) this is a somewhat common occurrence

among

> patients with CF. Fats are often found in the macrophages even

though

> reflux is not present and there seems to be no coherent theory as

to why

> this happens. Any ideas?

>

> So, if your doctors find evidence of fats in the lungs, I would make

> sure some sort of follow up test is performed to confirm reflux

before

> starting on medication (unless your child has symptoms of reflux.)

Has

> anyone else had an experience like this - diagnosed with reflux

without

> symptoms?

>

> Sorry this is so long - it's hard to describe some of these CF

> experiences briefly!

>

>

>

> Jane

>

> Mom of Kate, 4 w/cf

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[Guest guest]

Jane

I am so glad that Kate does not have reflux. This is good news and

now I suppose the search is on again for why she has the fats present in

her lungs. I wish that I could help with that but I am sure some one

will have some info for you.

Good luck. The only experience we had with reflux was that I had

to practically get on hands and knees for them to do anything about my

sons. They finally gave him meds after 4 months of constant vomiting

and spitting up. I was so angry by that time all I could say was gee

thanks.

Ashauna mom to 2 boys Maxwel and Colgan wcf, reflux.