breathing treatments

anonymous

New member
When do breathing treatments start? I have a 3 month old on enzymes, but the doctor has never mentioned breathing treatments. I have read on many posts about them and was wondering when all that starts.

Thanks,
Sharon
 

anonymous

New member
We started right away. DS was diagnosed at 5 days and we were learning how to do CPT and nebs the following week. Liza
 

anonymous

New member
Whoops, Liza again...

Our doctor had us start as soon as possible, stressing good lung care! But the local clinic was surprised to hear we were doing CPT and nebs. In fact at Ds's clinic appointment again today they acted surprised, but then in the same breath, they were also surprised that DS sounded and looked so good. Hello?! The other patients at the clinic sounded nasty - -loose junky sounding coughs. Might be a good idea to encourage it.
 

anonymous

New member
My daughter started the week of her diagnosis at five weeks of age. She was not having any respiratory issues. CPT was and still is used as preventative. My son was diagnosed in the womb. We started cpt when he was a month old. Most of the medications my kids are on are because I asked for them to be on. I want to be as aggressive as possible. CPT can't hurt, only help.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
 

anonymous

New member
Our doctor told us that cfers are born with normal lungs -- but with infections, mucus, etc. there can be scarring. Also it's a lot easier to get in the habit and get your child used to nebs and CPT at a very young age. It actually relaxes DS and a lot of times he falls asleep.
 

anonymous

New member
It is different for every CF patient - some have more lung involvement, some have little/none (for a while anyway). The best thing you can do is educate yourself on the treatments/therapies available and continue to question your CF doctor at each appt about them. Push for things if you feel they would be helpful and question the reasoning your docs give you because you are the best advocate for your baby. HOWEVER, try not to get caught up in the "everyone else is doing it" thing bc it is important to know that CF does affect everyone differently which means that people can benefit from particular treatments/therapies while others may not benefit at all (or suffer adverse effects, especially in infants when it is more difficult to gage this).

Best Wishes to you!
 

anonymous

New member
Kait started right away also.. Nebs and CPT and she was also diagnosed at birth.

Kaitsmom<img src="i/expressions/rose.gif" border="0">
 

anonymous

New member
We started CPT at one month with confirmed dx... but our doctors have pushed us away from preventative nebulized treatments, like pulmozyne, etc. They said these are not needed until there is more lung damage.

That concerned me that the docs weren't being agressive enough, but someone did post a study on here a few weeks ago that Pulmozyne does not help everyone equally as a preventative measure (at least that's what I think I read.)

It's hard to know what to do and ask for, isn't it?!@! Why put the little ones through something else if they don't "need" it... but how do you know when they "need" something preventative? I want to be an advocate but don't want to consume all of our time with treatments if the research is not conclusive yet. I'm glad you asked the question!

Stacy,
Mom of Maren and Berne 12 mo. old twins with CF
 

fourkidsmom

New member
We started the breathing treatments right after birth- 4 a day and still do 4 a day. Unless sick then we do every 4 hours around the clock.
 
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