Re: Resistant Psudomonas, HELP!

[Guest guest]

Liza, thank you so much fr mentioning Samen's synergy work at Co,lumbia;

don't give up; that lab may come ups with something yet! Please keep us

posted

on how your child does, how you are doing--the works! Love to you all,

n Rojas wcf, mom of 3 adults, the youngest with cf and 35; hopes en

route!

[Guest guest]

Okay, I sent another illiterate, poorly typed post again; I'm working on it,

and on my

proof-reading; I am sorry, both to the person I sent it to, and to the group,

n who despite a string of degrees, cannot type and think at the same

time.

[Guest guest]

Thanks n! Right now I am just worried. Last night I had to get up at

1am and give some heavy duty cough medicine, she was coughing non

stop. It does help her to get some rest. I will be calling the docs as soon

as they open.

[Guest guest]

,

How about using inhaled Colistin?

My daughter also cultures resistant P.A. it can be very scary. Her cultures

were also sent to Columbia for synergy studies. It did take a long

time,,,,,,,,,seemed like forever. But the good news was they did find some

other antibiotics that could be used to fight the P.A.

Hang in There,

Robin,

mom of 5

3 with cf,

(10 on the 25th. of this month. 4 & Scot 6 months)

[Guest guest]

,

How about using inhaled Colistin?

My daughter also cultures resistant P.A. it can be very scary. Her cultures

were also sent to Columbia for synergy studies. It did take a long

time,,,,,,,,,seemed like forever. But the good news was they did find some

other antibiotics that could be used to fight the P.A.

Hang in There,

Robin,

mom of 5

3 with cf,

(10 on the 25th. of this month. 4 & Scot 6 months)

[Guest guest]

,

How about using inhaled Colistin?

My daughter also cultures resistant P.A. it can be very scary. Her cultures

were also sent to Columbia for synergy studies. It did take a long

time,,,,,,,,,seemed like forever. But the good news was they did find some

other antibiotics that could be used to fight the P.A.

Hang in There,

Robin,

mom of 5

3 with cf,

(10 on the 25th. of this month. 4 & Scot 6 months)

[Guest guest]

, have 's doctors considered a de-sensitization protocol

for one of the a/b she is allergic to? This worked well for Rina

when she had a reaction to Ceftazidime. You give a very small dose

(0.001 mg) of the drug and watch for reaction. If none, in one hour

give a slightly bigger dose (0.01 mg) and so on until she is able to

get a therapeutic dose. It doesn't always work but more often than

not is successful. At our clinic it is done in consultation with a

paediatric allergist. A nurse with special training is assigned to

administer the drug and monitor the reaction. Hope this helps. Max

> My daughter has two resistant strains of Psudo right now.

She is

> allergic to both Ceftazidine and Aztrenam by IV. She is currently

using

> Zocyn and Tobramycin. She has been on IV for a bit over two weeks

and is NOT

> getting better. She at least is not worse but I need advise from

those who

> have been in this similar situation and what worked.

> Her sputum is pending at the synergy testing lab in Columbia. It

must be

> resistant there too as it has been like two weeks.

> Lorenzen, mom of , 13 wcf

>

>

>

[Guest guest]

Thank you! We did use Colisten years ago. We are going to try a new

combination of three meds. I will keep the Colisten in the back of my mind

as it did work years ago.

How long has your daughter had resistance problems? My daughter has had them

for several years but we have always been able to treat it and see results.

This time we have not.

Thank you,

Lorenzen