Our CF center is switching my 7 YO son from Tobi to Cayston. The paperwork takes some times so we haven't received anything yet. They would like me to try it with my almost 4 YO DD for a dose or two and see how she does, she also cultures PA and has a lot fo toruble with TOBI. It gives her a nasty cough, bloody noses, etc every time. It really irritates her. They don't know if she'll be able to do it since it's a mouthpiece and not a mask. But I'm hoping she'll be ok aince it's only 3-5 minutes. Anyone have a little one using an e-flow? I thought maybe I could have her use the nose clips they use when doing PFT's to stop her from breathing out of her nose
Cystic Fibrosis Forum (EXP)
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Eflow-Cayston-almost 4 year old?
- Thread starter amber682
- Start date
chelsie882003
New member
Cayston i think is a way better treatment then Tobi, Tobi takes like 30mins to do. Cayston has a different machine and it only takes 1min to do. You are on for a month then off a month just like Tobi. I have been on cayston for about 3yrs now. i love it. Cayston does make me cough, but that is a good thing. But it has never given me a bloody nose or anything just a cough. I'm sorry im not much help, Because im a DDF508 CFRD(Cystic Fibrosis Related Diabetes) I dont have kids. So i cant help u there. just letting you know what cayston does to me. once again im sorry
Chelsie
~24yrs Old, DDF508 with Diabetes
Chelsie
~24yrs Old, DDF508 with Diabetes
I am excited to try it because the three daily doses of Cayston takes less time than 1 TOBI treatment, and may not be so harsh on her. I'm wondering if I 3.5 year old would be able to do a neb without a mask correctly. I guess we will see Aboveallislove
Super Moderator
Not sure of the answer to your question but our almost 3.5 year old started breathing in the nebulized meds through the mask when I asked him to take a deep breath. And he'll take breaths and blow out. Not sure how the mouthpiece works but would assume it's breathing in through that, so hopefully it will be doable.
R
RytheStunner
Guest
You can get the exact same technology (eFlow) to nebulize Tobramycin and it only takes a few minutes. I wouldn't use the time as a deciding factor, but it's certainly convenient.
littlemisscoughsalot
New member
Starting cayston for my 5 year old as soon as insurance approves it. She started doing nebs with a mouthpiece at 4 1/2. One thing that worked well was counting every breath... So every time I'd say a number she'd take a deap breath and then wait until I said the next number. Lots of counting if you are doing 30 min of tobi, but I think it will work for cayston.
Ry- Tobi in a eflow? Isn't that super harsh? Our clinic has always recommended pari.
Our plan is to alternate tobi/cayston, so she'll alway be on one of them. I think I'll ask them about using the eflow for tobi. I'll tell you all what they say and how it goes.
Ry- Tobi in a eflow? Isn't that super harsh? Our clinic has always recommended pari.
Our plan is to alternate tobi/cayston, so she'll alway be on one of them. I think I'll ask them about using the eflow for tobi. I'll tell you all what they say and how it goes.
Ry- they want us to switch because DS pft's dropped 15-20%, and the Tobi really irritates DD. But thanks for the info!
I guess we'll try counting each breath. She has to try not to breathe through her nose, right? I'll let you know how it goes.
BTW- sorry for all the typos in my TP, I just reread it and WOW!
I guess we'll try counting each breath. She has to try not to breathe through her nose, right? I'll let you know how it goes.
BTW- sorry for all the typos in my TP, I just reread it and WOW!