Pseudomonas has shown it's ugly head.

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MOM247

New member
Hi there,

Well, Johnny's throat culture came back with Pseudomonas. It's the first time he has cultured it. The doctor left a message on our phone saying a bunch of big words, and then added this strain is the "Good one to get". He sounds confident that we might have a chance on knocking it out. I've read so much on pseudomonas in the last years. My first response was tears, and now I'm onto getting on my job. I'm on hold w/CF Service Pharmacy as I type this. I'm relieved that Johnny is almost 6, and then he can move to the new form w/Tobi inhaler. If you have any tips or pointers for me I would really appreciate it. Does it really take 45 mins to neb? Ahhhh

Thanks,

Sarah

Mommy to Johnny almost 6 w/cf and Bailey 3 no cf
 
R

Ratatosk

Administrator
Staff member
DS had nonmucoid pseudo as a 3 month old. No symptoms. For us, it felt as if we got the CF diagnosis all over again or at least made it real that he actually DID have CF. We started him on Tobi twice a day, every other month. We had a faulty compressor and it DID take 45-50 minutes; however, it should only take 20-23 tops. There is a podhaler (powder) that looks promising. Load a capsule into the handset, inhale the powder -- repeat three times. Do that twice a day. We still use tobi. DS plays video games, watches tv while nebbing it.
 
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running4life

New member
Don't stress - I've cultured them most of my life. I'm 26 and lung function at 86% and rising. I've had one hospitalization about 15 months ago. That's with not doing my TOBI during most of my teenage years and most of my early 20s too. It's not the end of the world. Keep him active, drink lots of water, and eat a healthy diet. That's what has worked for me. Now, I do the vest, HTS and Pulmozyme every morning. I weight lift and do cardio every day. I do Cayston ever other month.

Hang in there. I now thanked my mom for making me do all my treatments as a child and keeping me very involved in sports and force feeding me thousands of calories a day. He will thank you some day :)
 
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welshwitch

Guest
I echo running4life. I'm 33 and I've had it since I was a teen. Lung function still in the 100s. You just need to be as on top of your treatment plan as ever. Staying active was the # 1 thing.
 
M

MOM247

New member
Thank you so much for your responses. The doctor told me months ago that they are very aggressive fighting Pseudomonas. Typically one month of Tobi & 3 weeks w-Cipro. Then another culture in a month, and then put inpatient for IV antibotics if it doesn't clear:( I spent the day fighting w-insurance & pharmacies to get the ball rolling w-Tobi. My son started the Cipro last night, and hoping Tobi ships in the morning. I was shocked that none of are area Walgreens had the Cipro. My husband had to drive to our sons Children's Hospital for it. My sons response this morning was one of pure hate. I assume it tastes disgusting. We will work on that:) I'll find him something good to drink, to get the taste out of his mouth:)

Summer vacation started today, and I'm going to start "CF boot camp" Monday:) The kids both have early morning swim lessons all summer, and as much as it sucks we need to start getting up earlier. Start getting in a better routine for fall. Thanks again. Here is a "crazy mom questions". When we got our sons mutations as a baby, I remember the doctor telling me later on to remind them about hearing loss assosiated w-his particular mutations & strong antibotics. I assume that he was talking about IV's. I totally blanked on that earlier. Have any of you had to take different courses with antibotics because of this. I'm curious how this might be handled.

Thanks,

Sarah
 
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running4life

New member
No known hearing issues, although a friend teases me that I cannot hear very well, but I think it's related to stuffed up sinuses.

The taste of TOBI gets better - well your son will get use to it. Hang in there! Swimming is great. I still swim several times a week and it keeps my lung function high and feels great!
 
T

TreasureGoddess

Member
My son cultured pseudomonas when he was 3 yrs old and we did a hospital stay for IV meds, tobi off & on for 6 months? (can't remember) plus increased chest therapies more often during the day. He's now 13 yrs old and hasn't cultured it since. Hang in there and good that your medical team is treating it aggressively. I can't stress enough getting EXERCISE even if it's just little walks about the neighborhood. Keep the kiddo moving and that will help his body break up congestion and power the fighting of this infection. Hang in there mom, sounds like you have a good plan going. :)
 
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Nugget1

New member
My daughter cultured Pseudomonas for the first time this past March. Her doctor put her on Cipro and Tobi, cultured her after that course and the Pseudomonas had been eradicated. She turns 6 in a week and that was the first time she had ever cultured anything that wasn't cleared with 10-14 days of Bactrim. Cipro is heavy duty but that in conjunction with the Tobi seemed to do the trick. She does two airway clearance treatments per day with Albuterol, HTS, Pulmozyme and the vest. We bump this up to at least three (except Pulmozyme) when she is exhibiting the need. Lucky that her school allows for a treatment to be performed mid-day and the last is done before bed. She is not given options for her treatment and I'm certain that has had much to do with her never requiring hospitalization. With the correct neb it shouldn't take more than 20 mins. for Tobi. It is not optimal but neb and vest can be performed at the same time, cutting down the time requirement. Good luck, stay strong!
 
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