Monday, February 2, 2009

I spoke a little too soon

Another CF mom Jada at Zoe for Life asked me if Breezy's doctors added any oral antibiotics and I told her no. Well about 3 hours after I responded to Jada Nemours called me and said that Breezy's Doctor decided to take a more aggressive approach against this Pseudomonas. So Breezy is going to be starting on Levaquin an oral antibiotic and also Colistin which is administered by eflow.

Both of these medications are new to us. Have any of you ever used the eflow? I was told that the eflow is like a nebulizer that is administered in about 4 minutes. Breezy is on the Tobi nebulizer and the company that makes the eflow PARI Pharma has been conducting clinical trials with Tobi 100. Tobi 100 would be used in the eflow instead of the normal nebulizer. The eflow takes about 4minutes and the normal nebulizer takes about 16 minutes. Which is absolutely wonderful and i can't wait for Tobi 100 to be available to the public, Tobi kids would be much happier.


Alicia said...

I like that they want to take a more agressive approach. I'm sure it doesn't feel good that they need to, but if the need is there that's what I would want Sam's doctors to do!

I've never seen that piece of equipment-it looks fascinating. I really appreciate you sharing your journey because I know as soon as Samantha is Breezy's age we'll be dealing with the same stuff. Thank you.

Alicia said...

Answering the questions here since it was a "no reply" email...
Samantha just turned 3, and while she's been fairly healthy (she's on albuterol & flovent so far), I know everything I read is in the near future.

Yes, Timothy is CF free. We don't know if hes a carrier.

CFlover said...

we use the eflow and love love love it. Michael gets his meds (45 mins worth) done in 10 mins and
it makes NO sound at all.
You do however have to clean the eflow alot more and alot more detailed than a regular nebulizer.
I as a cf care taker =) highly reccomend it and Michael as a cf patient says its the greates neb. ever.


CFlover said...

We use the eflow and we love love love it.
It makes no sound and Michael gets 45 mins. worth of treatments done in 10 mins.
It has to be THROUGHLY cleaned after every treatment (more so than a normal neb.) We highly reccomend it.


Katey said...

Although I don't do cf treatments any more because of transplant, I did participate in a CF study a few months ago due to still growing pseudomonas. And it involved using the eflow. I absolutely LOVED it. It's so much quicker (like just 2-3 minutes) than the regular nebulizer and it works MUCH better because it gets the medicine in much deeper. I could tell a huge difference with the eflow. I only used it for the study drug, but I imagine it works just as good for the others as well. I did Colistin routinely prior to transplant. I would do 1 month of TOBI, then a month of Colistin. TOBI did pretty well for me, but I didn't like the Colistin so much. But Levaquin is a great antibiotic too! I'm sure everything will work out and Breezy will be feeling better in no time!

65-roses said...

Hey, I'm 17 and have CF. I also have the E-flow. I love it! Its so fast and small, and makes taking tobi or colostin so much quicker, and less inconvienient. Xx