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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...

Don't be sorry :) 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 :)

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...

My DS is 7 and has no clubbing, DD is 3.5 and has slight clubbing, only me and the docs even notice it. She has for maybe a year? She does have more issues than DS with a reactive airway and asthma, etc. They are both Delta F 508 and Q 493 X

welshwitch- I wasn't too concerned the first time bcause he was just getting over a little cold, or I thought it could have been a fluke or he was being silly, etc., but when it came up low today I got a little worried. We have a referral to see the ENT, they should call me within a couple of...

DS(7) normally gets 115-120% on his PFT's. 3 weeks ago and again today he got 100%. The doctor says it's still 100%, but concerning to have such a big drop. He hasn't really been sick, not culturing anything new, no cough. He cultures PA and steno on and off and does Tobi, but hasn't had any...

My son used to have an a acapella choice (dark green), which is easily taken apart to wash/sterilize. It broke and they sent us an acapella (light blue). It does not appear to come apart. Is there some way to wash this thing or should I just call them up and have them send us another acapella...

I think there are a few different kinds. Ours is dark green, the mouth piece comes off, then the top and bottom come apart, and the flutter device inside can be removed

My DS uses the acapella choice, I think. The dark green one that can be taken apart. Sometimes the piece inside won't flutter, the air just blows right through. There are no broken pieces, and I washed it, soaked it in vinegar, and then boiled it in case it was the chalky residue from boiling...

I was told by my childrens doctor that I should apply for SSI. We were denied several times a few years back, they say that although the children have a serious illness, they are not sick enough to be considered disabled. (Thankfully they are pretty healthy). An attorney suggested not going...

I'm curious about this as well. Me and my "husband" have been together for 13 years, living together for 12. We have 2 children. Our children also receive medicaid. All of both of our income is reported, I send in his paystubs and bank acct. info, etc. But I am afraid if we actually get married...

Thanks! I realized after I posted that the Erapid is the eflow, right? Way too exensive to buy out of pocket! But I'm still curious if it can be used with all meds and if they need special mixtures

I saw an ad for the Pari eRapid on CFservices Pharmacy homepage. I was just wondering if anyone has any experience with it? It's supposed to really cut down treatment time, and it says "The eRapid® is suitable for all medications that have been approved for use and are available throughout the...

In order to have cystic fibrosis, a person needs to have a mutated gene from each parent. Your daughter has the f508 mutation from each parent. That means each parent is a carrier of the f508 mutation.

In order to have cystic fibrosis, a person needs to have a mutated gene from each parent. Your daughter has the f508 mutation from each parent. That means each parent is a carrier of the f508 mutation.

I *think* it means it also tested people with one deltaf508 mutation and one other mutation that is neither DF508 or a gating mutation (which Kalydeco works for)

I *think* it means it also tested people with one deltaf508 mutation and one other mutation that is neither DF508 or a gating mutation (which Kalydeco works for)

My DD has the Vest and my DS has the Incourage. DD's hoses do pop off, but not by themselves. It's just that she is 3 and tends to pull them. With the clamps on the Incourage, you could pick up the machine by the hoses and they wouldn't pop off. But it's probably better that they disconnect when...

My DD has the Vest and my DS has the Incourage. DD's hoses do pop off, but not by themselves. It's just that she is 3 and tends to pull them. With the clamps on the Incourage, you could pick up the machine by the hoses and they wouldn't pop off. But it's probably better that they disconnect when...

I didn't even know that was an option! Thanks! She jsut stopped coughing about a half an hour ago, so it had her going for a good 2 hours