I did take Macrodantin for about 10 years but then some kind of study
came out that said people who take it for longer than 6 months have a
chance of getting fibrosis in the lungs

All that is a POSSIABLE side effect of macrodantin, my daughter is 5 and has
been on macro since she was like 2 months old. So its just a possiable side
effect, ALL medications have possiable side effects, just taking an asprin or
tyenoal for example has side effects. no medication is 100% side effect free not
even herbal remidies.




________________________________
From: Amber Kops <ac_kops82@...>
To: spinabifidacentral@yahoogroups.com
Sent: Saturday, May 30, 2009 2:38:26 PM
Subject: RE: [Spina Bifida Central] neurogenic bladder





I've been cathed/cathing every 3-4 hours since I was a baby. I am to use a new
catheter every time with a pair of gloves, iodine, and change my undergarment.
I admit I don't always change my undergarment when I'm out in public because it
makes cathing a little longer cuz I do it in my chair, but I change every other
time when in public. When I was a kid I had so many UTI's I became tolerant to
all oral medications and had to start taking IM injections and IV drugs. That
finally went away after a while thankfully. That was like 17 years ago though
so I don't remember how. Now when I get up in the morning I take my Ditropan
with a glass of Cranberry juice, drink at least 4 glasses of water a day, have a
bowel program of taking 1-2 Senna tablets every day which works good for the
most part, accidents are fewer. I also have the reflux in my kidneys which
doesn't help with infections either. I did take Macrodantin for about 10 years
but then some kind
of study came out that said people who take it for longer than 6 months have a
chance of getting fibrosis in the lungs so my Urologist took me off of it and
put me on Hiprex (also called Mandelamine) as a prophylactic. In addition to
that I have a Gentamycin/Sterile Water combo that I do through a catheter after
cathing twice a day. I also take Imipramine which treats the reflux in my
kidneys. I started that whole Ditropan, Hiprex, Imipramine combo when I was 17
or 18 and since then my reflux has been under control and is now no more than a
grade 2 on bad days and I only have problems with major infections 1 or 2 times
a year. I do get smelly cloudy urine if I'm not having a good week with my
bowel program and am backed up though. That usually clears up when I clean them
out though.

Hope that was helpful!

Ambe K.

----- Original Message -----
From: tHeRes3
To: spinabifidacentral@ yahoogroups. com
Sent: 5/29/2009 11:33:09 PM
Subject: [Spina Bifida Central] neurogenic bladder

Hi everyone. My daughter 13 months old has L4 SB. I cath her 3x a day
and lately she has been having episodes of UTI for the first time. She
doesnt leak as much as before though which i assumed was a good thing
but then she is now getting UTI's. She's been on & off antibiotics from
keflex to bactrim, but the bacteria comes & goes. I know this is the
nature of SB but having frequent UTI's in 2 months worries me.
How does having frequent UTI's affect kids with SB??..What
complications can occur?
Any tips on how to prevent it? how do i do a very safe &
clean catheterization? I now even clean her using mineral water before
introducing the cath..
Will the risks of getting UTI's become less as they get older?

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