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I'm devastated, DS with multiple UTIs - Page 2

post #21 of 87
Quote:
Originally Posted by Fyrestorm View Post
ITA that a diagnosis of Phimosis is preposterous in a 5yo.

Is it possible that all these UTIs he's had this year are actually the same UTI? There are ABX resistant strains out there and you might not be completely getting rid of it and it just keeps reinfesting the bacteria until he starts showing symptoms again.
They should of tested the bacteria for resistance to the abx. Then they should of re-tested after the course of abx to make it was gone.

OP did they do this?
post #22 of 87
Re: why can't they do a VCUG under general anesthesia. General anesthesia has definite risks - like blood pressure issues, aspiration, etc. There would have to be a good rationale for taking on those risks. I don't know exactly how a VCUG is done, but likely all he would have to deal with is getting catheterized and have the bladder filled with contrast dye, then having X ray pictures taken. Although nobody likes having tubes put in body orifices, this is benign enough that it just doesn't justify the risks of general anesthesia. Ask about what kind of sedation he can be given to keep him calm and comfortable. I agree, if this hasn't been done yet, it needs to be the next thing to help figure out what's going on.

Gillian
post #23 of 87
Thread Starter 
He's had renal ultrasound, and everything looked fine.

They did culture his urine several times. The first two were E. coli, the third was some kind of cocci, I don't remember what specificially. He's also had bacteria-free urine tests. They did do an antibiotic resistance test and gave him the drug that was supposed to best kill it. When it (the infection) came back, they gave him the same drug, even though we asked them to use a different class drug. He's also had bacteria-free urine tests that contained blood. The very first time he had visible blood in his urine, I took him right to urgent care, and his urine test there was perfectly normal, so the doctor just looked at me like I was stupid, and the nurse swore up and down that it must have been red food coloring. A few days later I had a very, very sick little boy, went back to the doctor, and he did indeed have a UTI.
post #24 of 87
Thread Starter 
So do UTI's come FROM the kidneys???
post #25 of 87
Thread Starter 
Quote:
Originally Posted by Fyrestorm View Post
ITA that a diagnosis of Phimosis is preposterous in a 5yo.

Yeah, I asked the urologist if hormones cause the foreskin to become stretchy, because we used betamethasone cream for a while, and it worked, temporarily. She said yes. I asked her if she thought my son has an endocrine disorder. She wouldn't give me a straight answer. She said he is still young. I asked if we could just wait for his natural hormones to kick in when he's older to cause retraction. She said it might happen when he's older, but he has a tendency to have phimosis, and it might be lifelong. He might never be retractable.
post #26 of 87
Thread Starter 
Quote:
Originally Posted by glongley View Post
Re: why can't they do a VCUG under general anesthesia. General anesthesia has definite risks - like blood pressure issues, aspiration, etc. There would have to be a good rationale for taking on those risks. I don't know exactly how a VCUG is done, but likely all he would have to deal with is getting catheterized and have the bladder filled with contrast dye, then having X ray pictures taken. Although nobody likes having tubes put in body orifices, this is benign enough that it just doesn't justify the risks of general anesthesia. Ask about what kind of sedation he can be given to keep him calm and comfortable. I agree, if this hasn't been done yet, it needs to be the next thing to help figure out what's going on.

Gillian
Can't that be my decision to use GA?
post #27 of 87
Quote:
Originally Posted by QueenOfThePride View Post
Yeah, I asked the urologist if hormones cause the foreskin to become stretchy, because we used betamethasone cream for a while, and it worked, temporarily. She said yes. I asked her if she thought my son has an endocrine disorder. She wouldn't give me a straight answer. She said he is still young. I asked if we could just wait for his natural hormones to kick in when he's older to cause retraction. She said it might happen when he's older, but he has a tendency to have phimosis, and it might be lifelong. He might never be retractable.
She is absolutely WRONG! It's impossible to diagnose Phimosis in an unretractable child. It's not tight, it's attached. The cream worked temporarily because that's what it's supposed to do...then his foreskin went beck to it's natural state - attached! It will detach in it's own time and he is not prone to phimosis.

oh...and she wouldn't have made the wrong diagnosis if she hadn't been trying to forceably retract him which is a big NO NO. It can cause pain, microtears and lead to infections.
post #28 of 87
Thread Starter 
Quote:
Originally Posted by Fyrestorm View Post
She is absolutely WRONG! It's impossible to diagnose Phimosis in an unretractable child. It's not tight, it's attached. The cream worked temporarily because that's what it's supposed to do...then his foreskin went beck to it's natural state - attached! It will detach in it's own time and he is not prone to phimosis.
Actually, I'm pretty sure all the synechia is detached (and has been for a long time), since there is a slight ballooning all the way around when he pees. It's just the opening that is tight.
post #29 of 87
Quote:
Originally Posted by QueenOfThePride View Post
So do UTI's come FROM the kidneys???
No. UTIs start in the bladder, and if reflux is present the infection is able to move from the bladder into the kidneys. A UTI by itself is extremely uncomfortable, but not all that harmful. If the infections move into the kidney it can be very harmful.

I don't know of a urologist that would do an initial VCUG under GA. From what I understand, the reasoning is that being under anesthesia could cause the bladder to act differently, therefore the testing would be inaccurate. There is a follow up VCUG that can be done under sedation to monitor if reflux still exists after initial testing, but it cannot tell the grade/severity of the reflux.

DD has had a number of ultrasounds, none of which showed the numerous urinary issues that she has. They will generally show any significant scarring or abnormalities, but not always. In our case, they not show dd's extra ureters, reflux, kidney abnormalities or enlarged bladder.

As frightening as it seems, I would do the VCUG. Make sure before hand that the techs have experience with cath'ing an uncircumcised child, and as KatWrangler mentioned, you might want to contact Children's Life Services. They are excellent.
post #30 of 87
Thread Starter 
Quote:
Originally Posted by Fyrestorm View Post
oh...and she wouldn't have made the wrong diagnosis if she hadn't been trying to forceably retract him which is a big NO NO. It can cause pain, microtears and lead to infections.
I know, but something is wrong, and an exam is necessary.
post #31 of 87
Quote:
Originally Posted by QueenOfThePride View Post
Actually, I'm pretty sure all the synechia is detached (and has been for a long time), since there is a slight ballooning all the way around when he pees. It's just the opening that is tight.

That is a good thing! The sphincter is supposed to be tight to keep things out. Think about it this way...After you pass feces, your anal sphincter closed back up again - right? The same thing happens with the sphincter of the foreskin. Ballooning is perfectly normal and it may just be a sign that all the synechia are not free yet - again, perfectly normal at this age.
post #32 of 87
Quote:
Originally Posted by QueenOfThePride View Post
Yeah, I asked the urologist if hormones cause the foreskin to become stretchy, because we used betamethasone cream for a while, and it worked, temporarily. She said yes. I asked her if she thought my son has an endocrine disorder. She wouldn't give me a straight answer. She said he is still young. I asked if we could just wait for his natural hormones to kick in when he's older to cause retraction. She said it might happen when he's older, but he has a tendency to have phimosis, and it might be lifelong. He might never be retractable.
The cream should never be used on a child only a boy in puberty or an adult male. For one thing the hormones for another it will tighten back down after treatment because there are no hormones to keep it that way.

My dd had the VCUG at 1 after a single UTI. If I had it to do over I wouldnt have had it after one. The VCUG is uncomfortable if you have ever had a cath. you know what I am talking about. The insert the cath. then put dye in and monitor the dye with a x ray like thing. DD wasnt in a lot of pain and your ds is old enough to understand what is happening if you explain it. You are allowed to be with him talking to him and watching. Which you need to do anyway to make sure they dont retract him.

I understand him needing an exam to see what is wrong but there is nothing to see by looking at his foreskin since it has nothing to do with UTI tight,retractable or what ever they are just not related in any way shape or form. Even if he is never retractable that only becomes a problem if it hurts him during sex or masterbation. It will not cause issues with bladder or his fertility or whatever.

There are more than a few men who go their whole lives being non retractable with zero problems.

Links to the UTI and foreskin myth:
UTI myth: http://www.cirp.org/library/disease/UTI/
http://www.nocirc.org/statements/breastfeeding.php
Quote:
[FONT=Times New Roman, serif]In fact, UTI's are so rare in any case that, using Wiswell's data, 50 to 100 healthy boys would have to be circumcised in order to prevent a UTI from developing in only one patient. (Using more recent data from a better-controlled study, the number of unnecessary operations needed to prevent one hospital admission for UTI would jump to 195.

FORESKINS: Seek Elsewhere for Infants' Urinary Tract Infections
http://www.cirp.org/news/1997.12.22_PhysiciansWeekly/



UTI Neonatal circumcision revisited
http://www.cps.ca/english/statements...ION%20OF%20UTI


The incidence of Geniturinary abnormalities in circumcised and uncircumcised presenting with an initial urinary tract infection by 6 months of age
http://www.cirp.org/library/disease/UTI/mueller/


Your ds should be treated exactly the same as if he where a girl with repeat UTI and as we both know nothing is cut off a girl as a treatment.

ETA: fixed the links
post #33 of 87
Quote:
Originally Posted by QueenOfThePride View Post
Yeah, I asked the urologist if hormones cause the foreskin to become stretchy, because we used betamethasone cream for a while, and it worked, temporarily. She said yes. I asked her if she thought my son has an endocrine disorder. She wouldn't give me a straight answer. She said he is still young. I asked if we could just wait for his natural hormones to kick in when he's older to cause retraction. She said it might happen when he's older, but he has a tendency to have phimosis, and it might be lifelong. He might never be retractable.
OMG I can't believe a urologist / specialist would actually believe this. Stay strong mama and don't let anybody try to convince you to circumcise your young son for phimosis and / or a belief it’s a contributing factor to his UTI's ! Your incompetent doctor fails to educate herself on the normal development of the male prepuce and age 10 being the average age of full retraction. A lot of boys don't retract until puberty sets in. Creams to help retract should only be prescribed for males in their late teens or early twenties. In the event your son has a true diagnosis of phimosis that can't be treated with stretching and creams, then as a young adult he can have a non-invasive surgical procedure called a prepuplasty that enables his foreskin to retract without amputating his prepuce. Circumcision is unnecessary!

Doctors in the Circ. Happy USA frequently recommend circumcision for minor problems that can be treated with less invasive and more effective treatments. Use your common sense, I wish more doctors did. Would you allow the specialist to amputate tissue adjacent to and covering your young daughter's urethral opening to treat her recurrent UTI's or to cut away the tissue covering her clitoris because she (or her parents) were unable to retract her prepuce and expose her clitoris? Sounds silly doesn't it? Search and choose the doctors treating your son carefully and wisely. Best Regards.
post #34 of 87
You need to contact a lawyer to make sure you dh cannot do that. We have one that posts here a lot actually along with Dr's who deal with intact penii and can help you out here and they take phone calls.

Quote:
The attorney for Doctors Opposing Circumcision, John Geisheker

Email him at
docdirector.geisheker@gmail.com
Marilyn Milos an RN and founder of nocirc also takes calls and she can be very helpful.

You desperatly need a urologist who is foreskin knowledgeable.

To find a Dr hopefully near you go here http://www.doctorsopposingcircumcisi...t/contact.html and contact nocirc
post #35 of 87
I haven't read all the responses, but I highly encourage you to look into D-Mannose as a supplementation ASAP. A naturopath recommended it to me when I had a UTI and wanted to treat it naturally. I combined that with cranberry juice (Does your DS like it?) and beat my UTI naturally. As I understand it, D-mannose helps flush/shed ecoli in particular from the urinary tract; it's a form of sugar and has no side effects that I'm aware of. Also I would recommend supplementing his diet with a high quality pro-biotic if you're not already.

Google D-Mannose + UTI for good info!

I don't know of any reason why you couldn't combine D-mannose, cranberry juice (or triple strength capsules), and a probiotic prophylactically as well.
post #36 of 87
I'm sorry your ds is going through this. The doctors seem uninformed at best. If I were you, I would contact Doctors Opposing Circumcision, get a consult and names of good doctors in your area.
post #37 of 87
Quote:
Originally Posted by MCatLvrMom2A&X View Post
The cream should never be used on a child only a boy in puberty or an adult male. For one thing the hormones for another it will tighten back down after treatment because there are no hormones to keep it that way.

My dd had the VCUG at 1 after a single UTI. If I had it to do over I wouldnt have had it after one. The VCUG is uncomfortable if you have ever had a cath. you know what I am talking about. The insert the cath. then put dye in and monitor the dye with a x ray like thing. DD wasnt in a lot of pain and your ds is old enough to understand what is happening if you explain it. You are allowed to be with him talking to him and watching. Which you need to do anyway to make sure they dont retract him.

I understand him needing an exam to see what is wrong but there is nothing to see by looking at his foreskin since it has nothing to do with UTI tight,retractable or what ever they are just not related in any way shape or form. Even if he is never retractable that only becomes a problem if it hurts him during sex or masterbation. It will not cause issues with bladder or his fertility or whatever.

There are more than a few men who go their whole lives being non retractable with zero problems.

Links to the UTI and foreskin myth:
UTI myth [url]http://www.cirp.org/library/disease/UTI/
http://www.nocirc.org/statements/breastfeeding.php



FORESKINS: Seek Elsewhere for Infants' Urinary Tract Infections
http://www.cirp.org/news/1997.12.22_PhysiciansWeekly/




UTI Neonatal circumcision revisited
http://www.cps.ca/english/statements...ION%20OF%20UTI


The incidence of Geniturinary abnormalities in circumcised and uncircumcised presenting with an initial urinary tract infection by 6 months of age
http://www.cirp.org/library/disease/UTI/mueller/



Your ds should be treated exactly the same as if he where a girl with repeat UTI and as we both know nothing is cut off a girl as a treatment.
I couldn't get the second or fourth link to open, but would be interested in reading them...
post #38 of 87
Fixed I hope. OK tried again sorry about that.
post #39 of 87
Quote:
Originally Posted by MCatLvrMom2A&X View Post
Fixed I hope.
I still can't see them, but maybe it's just me. We're on satellite, and it's finicky. Does anyone else see them?
post #40 of 87
I know this is gross and probably not something you want to think about...but is it possible he is somehow getting poop on his hand or playing with his...erm...area back there, not washing his hands with soap, and then playing with his penis? Actually even eating food with some E Coli present and then not washing his hands could lead to it-it might be a small enough amount that stomach acid kills it off so he doesnt get sick, but still enough that messing with himself infects him in his urinary tract.

It doesnt really make sense to me that he would have E Coli present due to phimosis. Is it just me? Is his foreskin really tight? Does it hurt? I'm just kind of doubting phimosis-and even if it were that, I'd go to creams and such before circ.

I'm sorry you're going through this!
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