treatments

[coltsfan715]

I agree with most people on here that prevention is a big factor with CF. I would try doing CPT on my child if it is possible. I don't think aerosols are necessary at all times - I know I took them regularly as a child, but I know kids now that take albuterol/pulmozyme once a day and only take other neb treatments such as TOBI when they are sick. Also I know of some kids that don't do any neb treatments unless they are sick.

Personally I am not an advocate for constantly using any antibiotic - be it oral, IV or inhaled - if they aren't that necessary. I use TOBI now because I culture Psuedo and need TOBI to help keep that under control, but if I didn't culture anything then what would be the point of treating something that is not there. That is just how I look at it. Your doc may want to use antibiotics like that sparingly so as to have more option for treatment if/when the time comes that your child needs to be treated with those meds.

Take Care,
Lindsey

 

[thelizardqueen]

Well I've done CPT all my life, regardless of how clear my lungs were. I on the occasion used an inhaler, but didn't start doing any inhaled antibiotics (Tobra or TOBI) till I was 14 - because that's when I needed it. I didn't start to culture PA till I was 14.

 

[amber682]

<div class="FTQUOTE"><begin quote>my actual question was about breathing treatments with a nebulizer but i guess i should have asked about the chest percussions also at this time we aren't doing neither we jsut assumed that the doctors always said her lungs sound perfect so she didn't need to be doing anything but from what i am reading alot of it seems to be preventative so should we start he is a year old there is so much to learn about this disease and maybe we were not informed very well and not explained about the preventative measures. If we should be doing the cpt does anyone have any ideas on how to get started at this age and the best wasy to do it </end quote></div>

Is there a respiratory therapist at your cf center that could show you how to do it, just so you'll feel comfortable doing it knowing you're doing it correctly? With my son, I either lay him across my lap on a pillow, or he sits on my lap while I'm in the rocking chair and sort of leans on me sitting sideways while I do the back and sits facing forward leaning back for me to do the front. I put on cartoons to distract him, but sometimes that doesn't do it, so I'll sing. I try to let him play with a toy or book or stuffed animal. Then I do the chest pt to his chest, back, and sides if he'll let me. It helps if he's tired, he squirms less and sometimes falls asleep so then I take the opportunity to do an extra long session. My doc said 2 times a day, up to four if he's sick, for 15 minutes each time. I usually end up doing it for 20-25 minutes. If he's really fighting then 15. If I'm lucky and he falls asleep I'll go on for 45 min sometimes. But your doc can recommend what he feels is best.

But I do believe most children with cf are atleast doing chest pt, with or without a lot of lung issues.It seems a lot of people started almost immediately after diagnosis. You'd never know by looking at my son that he has cf. He is at the average weight (actually a little chubby),he doesn't cough much, and he's rarely sick. He's only been on antibiotics a few times, less times than 2 other babies I know without cf who are almost the same age. (Except for the past 2 months he's had a cough that won't go away and they've tried quite a few meds.)But we still do chest pt every day 2x a day or more when he's sick. As for inhalers or nebulizers, we normally only do them when he's sick, so not often. But some kids do them preventatively. I actually might like to have Vin do pulmozyme preventatively.

Sorry this is so long, but basically ask your doc aboout it. A respiratory therapist can show you how (it's not very hard, unless you've got a wiggle-worm like me!). And a favorite movie or cartoon or toy can help to keep children still and distracted so you can get it done. And I make sure Vin's not hungry, clean diaper, and preferably tired, before a nap or bed time, so it will be easier for me to do.

I hope this helped!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[amber682]

<div class="FTQUOTE"><begin quote>I have heard that some doctors are mixing in inhalers, too and/or doing without the nebulized bronchiodiolators. Thought it was in reference to U of MN's program. </end quote></div>

Vinny's dr. put him on duoneb (albuterol and ipratromium bromide (?)) with the neb a couple weeks ago. At the check-up last week Vinny was doing his usual screaming/crying when the dr. tries to listen to his lungs. (He's so scared!) Then he tried to hold him down to do a throat culture, Vinny was fighting him so bad. I said, "Now you know what he does for most of the 30-35 minutes while I'm doing the duoneb 3 times a day." It's true, he hates the neb. So he prescribed duoneb inhaler instead, with a valved holding chamber and a mask. It is so great only having to do 3 puffs for a few breaths each puff than a half hour of fighting. It's 3-4 times a day. And he doesn't mind the inhaler nearly as much as the neb. We still do pulmozyme once a day though since he's sick.

Just thougth I'd add that, not sure why.<img src="i/expressions/face-icon-small-smile.gif" border="0">