Lung question

[Guest guest]

I am wondering if you are doing any of the extra helps that go along with lung

problems. Is she on Guafinisin or Mucinex to make the mucus less thick? is she

drinking well? Do you do chest Percussion or use a vibrating vest? Does she use

the nebulizer? How about atropine with her nebs? These are some of the things we

have done beyond steroids to increase the best possible outcomes is she taking a

multivitamin and probiotics to increase her overall wellbeing? Also is she have

sinus issues that are draining and a part of the reflux picture. Are you washing

her sinuses daily to decrease the drainage? Both of my kids have severe sinus

disease only my son has immune issues but the important things I have learned

over the years is that steroids is not the only course of action and yes we have

had to use them with both kids but some of the above things will help to clear

the lungs up as you are having to use the steroids. I remember our immuno

telling us that

Lucas had bronchiectasis when he had been on steroids over 6 weeks and I needed

to have all this testing and biopsies etc. I decided to see if there were any

other things I could do help him get over where he was and these are the things

that I learned that help us a great deal OH yeah, with the chest percussion you

might try some postural drainage and coughing . It might be worth seeing if you

can get an appointment with a Respiratory Therapist to let you know how to do

these things. I found that if I was actively helping in other ways that I felt

better about what was going on. Also if you are using a humidifier make sure it

is a cold air one and that you clean it daily . We use a little bit of bleach

and then rinse it with a vinegar solution to keep out the molds and bacteria as

well as potential yeast over growth. Sadly our doctors offices these days do not

teach a great deal of this and I KNOW that it makes a difference to work with

the body to

help it get better. Many of these measure are always used with kids that have

Cystic Fibrosis, it is a given and why they do not take the time to teach others

I think is just poor practice.

Just my 2 cents. Hope it helps you to see that you can be an important part of

her getting better too.

BARBIE

Lung question

I have a question for anyone who might be familiar with lung

issues/illness. I took Reagon to the pulmonoligst yesterday and her

PFT's were in the toliet. They did a chest XRay and the dr. came in and

put her back on 8cc of steroids daily because she said she had a small

area in one of the lower lobes of her lungs that was starting to

collapse! Now that sounds serious to me, but she came into the room

after looking at the XRay, made that comment, told me to up her

steroids until I came back next week and then said she'd meet me up

front when I was making my next appt. and left the room. When I got up

front, they told me she had to run to see a patient at the hospital!

So I was standing there wondering.. " okay, how bad is this? " I asked

one of the nurses and her response was " oh, this happens when their

airways stay closed up too long and all that gunk builds up in the

bottom of their lungs, the steriods will clear it up. " She said their

lungs just get sticky from the crud and stick together. No one seemed

to be overly concerned, but it sounded worrisome to me!! She is on her

3rd day of the higher dose of steroids and just starting to show a

little improvement. That worried me also, but the nurse said when they

have been tight for awhile that it might take several days of steroids

to get their airways completely open and see a big improvement. Any

one experience this before??

Becki

Reagon 6 yrs. CVID, asthma, reflux

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[Guest guest]

Barbie,

Reagon does take daily probiotics, liquid multivitamin, colostrum and

a glyconutrient, but we haven't been real aggressive with the

procussion therapy. A friend of mine used to be a respiratory

therapist and she mentioned the other day that getting a procussion

instrument would probably be very helpful. I do have her

do " huffcoughing " that they showed her how to do and have her blow into

her peakflow meter several times a day, just to get her blowing hard.

Sinuses have not been much of an issue for us (so far!) She did have

sinus surgery about a year and a half ago and we go in to see her ENT

every now and then, but he says her sinuses look great since the

surgery. I've wondered about the Mucinex. I give it to my other kids

(nonPIDD, but severe allergies). I'll have to start giving it to

Reagon too. I do use saline in her nebs after her meds are done, just

to help loosen things up. Does your son still have broncieactisis? (I

don't know how to spell that:))

Becki