Results of 24 hour pH test

[Guest guest]

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