Looking for opinions and thoughts!

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VeBowers121

New member
I am new to this site, and its not my first CF blog site I am apart of, im also on Cystic Fibrosis Connect, and well I posted this blog on there as well but i'm still wanting more opinions if you guys dont mind! I am a mother of a son who has CF, and hes 6 months old, he was diagnosed with it when he was almost 3 weeks old, and I trust his doctors and all, but im iffy on one thing they want to do, its completely up to us... They measured him for the vest and he is the right size to get it, so they ordered it... now I know in some clinics, they wont allow little ones to have it till they are 3 or 4 years old, but has anyone started it earlier? and if so were there any complications with it?
 
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AmalynRose

New member
I have a cousin that was diagnosed with CF at birth. I will ask my aunt what they did when she was that age and get back to you.
 
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AmalynRose

New member
"let her know Clara was one when she started her treatments...she would have sooner...but Fargo didn't start them....children's does though as soon as they are big enough!!! She has had 0 complications from it!!"

I hope that helps!
 
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Aboveallislove

Super Moderator
we started ds at 6 months ish to. best decision ever! never had to get use to i...always what he has known and freed up time by doing breathing treatment and vest and much easier on parents. pm me if anything specific.
 
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Ratatosk

Administrator
Staff member
We started regular CPT treatments when DS was less than a week old. We didn't get DS' vest until he was 3, but his doctor wanted us to be familiar, confident enough with CPT. I have friends whose kids go to U of MN and they got vests by the time they were a year old, think some were as young as 9 months old. Depends upon size.

Fargo... Bleah! They're awful about suggesting any type of chest physiotherapy. I know a family in MN that have teens/college age kids and the daughter has NEVER done CPT and the son didn't get a vest until he was 16 and had major issue.
 
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AmalynRose

New member
My aunt was telling me that Fargo actually got their CF clinic title revoked from the CF Foundation because of how bad the care was! They go to Children's, now.
 
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Ratatosk

Administrator
Staff member
Nope, they're still an acreditted center. Most of us either go to Children's or U of MN. Do know of a few who go to Sioux Falls.
 
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Guest

Guest
We are in KC and they told us sometime around 18 months or a certain chest size. I had asked them for one when he turned 6 months old but they declined. There are some clinics who also use a wrap for smaller kids. I just wish there was more consistency across these CFF accredited centers in the US. Vests start from 6 months to 3 years...that is quite a range in time to potentially improve care!??!
 
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