I'm devastated, DS with multiple UTIs - Mothering Forums

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#1 of 87 Old 09-20-2009, 03:42 PM - Thread Starter
 
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I've lost track of how many UTIs my 5yo has had this year. Circumcision is obviously not an option I will consider. Yesterday he had visible blood in his urine again, and this morning his urine smelled strongly of ammonia. I feel like I am in freefall. My crazy, abusive, narcissistic, and highly socially influential exH is pushing for circ, as are the doctors. DS has been diagnosed with phimosis. DS has said that he sometimes gets UTI symptoms that come and go, but he doesn't tell anyone because he doesn't want to go back to the doctor.

Some other details:
Doctor felt his belly and said he was constipated. Even though he goes at least once a day, she wants him going two or three times a day.

The pathogen has usually been E. coli.

DS should drink more water. Today I bought him a camelback that I will demand that he can wear all day at school. And I instructed him to finish all 32 oz every day.

His diet is not so great. I'm considering making him vegetarian, but I definitely need some direction for that. Should I ask the pediatrician for a referral to a dietician? I'm single, work full time, I don't have time to put a lot of thought into meals. It would be great to just open a folder and have it tell me what to make.

Something I noticed a few months ago, is that when he pees, he 'props' his penis on the waistband of his pants, but that squishes his penis, and I wonder if that is causing a mechanical 'stricture' impeding urine flow. I told him to stop doing that, but I don't know if he still does it sometimes.

Doctor said DS was dehydrated.

We have a family history of kidney stones. DS's dad had one, and my sister has had several. DS had a kidney/bladder ultrasound, and everything looked fine.

It's possible dehydration is causing some kind of crystals or sediment in the urine that cause irritation and subsequent infections. But the doctor said his urine tests don't look like someone who is a stone-former.

Also a family history of bladder cancer. Although all of these people smoked for decades.

DS has never been forcibly retracted.

The more UTI's DS gets, the thinner my argument sounds (even to my own ears) that I just don't 'believe' in circumcision. But I still find the idea of penile surgery appalling.

I MUST find a way to stop these! I fear that my ex will be able to go to court and take control of medical decisions, and have DS circ'ed!

Tis the season, for hot apple cider!
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#2 of 87 Old 09-20-2009, 04:20 PM
 
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I have two thoughts that may help.

First, if you are not already, your son should be seeing a pediatric urologist......not just a pediatrician.

Second, I would get him on a high potency probiotic ASAP. I order ours from Kirkman. They are shipped in a cold pack and have to be kept refrigerated.

I hope you can get more help from a urologist.

Also, is it possible he is not drinking enough because of limited opportunity to use the bathroom at school ? I would get an order from the doctor that your son is to have completely unrestricted access to the bathroom at school.

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#3 of 87 Old 09-20-2009, 04:27 PM - Thread Starter
 
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He is seeing a pediatric urologist.

I'll get some probiotics.

I did tell the K teachers about his condition and his need to be encouraged to drink water and go to the bathroom frequently. I don't know if it's in practice or not. I'll check in with them again on it.

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#4 of 87 Old 09-20-2009, 04:36 PM
 
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Originally Posted by QueenOfThePride View Post
I've lost track of how many UTIs my 5yo has had this year. Circumcision is obviously not an option I will consider. Yesterday he had visible blood in his urine again, and this morning his urine smelled strongly of ammonia. I feel like I am in freefall. My crazy, abusive, narcissistic, and highly socially influential exH is pushing for circ, as are the doctors. DS has been diagnosed with phimosis. DS has said that he sometimes gets UTI symptoms that come and go, but he doesn't tell anyone because he doesn't want to go back to the doctor.
I am sure you know that it needs to be made clear that he can come to you. It goes without saying that that can lead to a bad situation.

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Originally Posted by QueenOfThePride View Post
Some other details:
Doctor felt his belly and said he was constipated. Even though he goes at least once a day, she wants him going two or three times a day.

The pathogen has usually been E. coli.

DS should drink more water. Today I bought him a camelback that I will demand that he can wear all day at school. And I instructed him to finish all 32 oz every day.

His diet is not so great. I'm considering making him vegetarian, but I definitely need some direction for that. Should I ask the pediatrician for a referral to a dietician? I'm single, work full time, I don't have time to put a lot of thought into meals. It would be great to just open a folder and have it tell me what to make.

Something I noticed a few months ago, is that when he pees, he 'props' his penis on the waistband of his pants, but that squishes his penis, and I wonder if that is causing a mechanical 'stricture' impeding urine flow. I told him to stop doing that, but I don't know if he still does it sometimes.

Doctor said DS was dehydrated.

We have a family history of kidney stones. DS's dad had one, and my sister has had several. DS had a kidney/bladder ultrasound, and everything looked fine.

It's possible dehydration is causing some kind of crystals or sediment in the urine that cause irritation and subsequent infections. But the doctor said his urine tests don't look like someone who is a stone-former.

Also a family history of bladder cancer. Although all of these people smoked for decades.

DS has never been forcibly retracted.

The more UTI's DS gets, the thinner my argument sounds (even to my own ears) that I just don't 'believe' in circumcision. But I still find the idea of penile surgery appalling.

I MUST find a way to stop these! I fear that my ex will be able to go to court and take control of medical decisions, and have DS circ'ed!
[/quote]

You've covered a lot of the questions I would have asked. Especially, has he had more advanced tests to examine his kidneys and urinary tract. The answer seems to be yes and there is nothing abnormal. I thought about diet too but I am not aware of dietary issues that can directly increase risk of UTI. I have read here and elsewhere that drinking Cranberry juice (100% juice no added sweetner like corn syrup) and eating yogurts can reduce his risk a bit. Have you considered perhaps the juice and a yogurt in the morning and if you're packing lunches or snacks pack yogurt? I found this page that might help with food and meals:

http://www.remedy-bladder-infection....lmeasures.html

Finally, have you seen an intact friendly doctor whose diagnosis you might be more comfortable with?
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#5 of 87 Old 09-20-2009, 05:19 PM
 
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I do not have much to offer re: controlling the UTIs, but make sure he know to wash his hands after wiping or touching his bottom. Boys of this age explore their bodies, and may go from anus to foreskin, which can lead to infection.

My understanding is that the correlation between being intact and UTIs only applies in the first year of life. However, the correlation in itself is questionable. Here are a couple of articles to strengthen your argument for leaving your son's foreskin right where it is.

http://www.cirp.org/library/disease/UTI/kwak1/
Compared rates of UTIs in boys with urinary tract abnormalities after anti-reflux surgery. There was no difference in the rate of UTIs in boys who were circumcised at the time of the anti-reflux surgery compared to the boys who had the anti-reflux surgery and were not circumcised.


Van Howe, RS. Effect of confounding in the association between circumcision status and urinary tract infection. J Infect. 2005 Jul;51(1):59-68

[Paraphrased from the Abstract] Assuming that true urinary tract infection occurred equally regardless of circumcision status, the factors included in the model (differences in the rates of prematurity, of urine collection, of false positive urine specimens, and of health-seeking behaviors in infant boys based on circumcision status) could account for urinary tract infection being diagnosed 4.27 times more frequently in non-circumcised males under a year of age. Previously reported differences in the rate of urinary tract infection by circumcision status could be entirely due to sampling and selection bias. Until clinical studies adequately control for sources of bias, circumcision should not be recommended as a preventive for urinary tract infection.


Good luck! Gillian
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#6 of 87 Old 09-20-2009, 05:21 PM
 
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Your son needs to be seeing a specialist, and needs to be tested for kidney reflux.

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#7 of 87 Old 09-20-2009, 05:31 PM - Thread Starter
 
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I thought about diet too but I am not aware of dietary issues that can directly increase risk of UTI.
There is some evidence that constipation can cause UTIs, so we need him to eat more fiber and less protein. Yeah well, it's pretty hard to get a 5yo to eat a plethora of vegetables.

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#8 of 87 Old 09-20-2009, 05:35 PM - Thread Starter
 
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Your son needs to be seeing a specialist, and needs to be tested for kidney reflux.
He is seeing a pediatric urologist (group) at a children's hospital. We haven't tested for kidney reflux, and I'm rather resistant to put him through that procedure. I told them I won't do it unless DS was completely anesthetized. They said it doesn't work that way, so we are deadlocked.

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#9 of 87 Old 09-20-2009, 05:38 PM
 
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Your son needs to be seeing a specialist, and needs to be tested for kidney reflux.
Second that! Has your DS had a VCUG done? If not i would really push for it.

Also constipation can cause UTIs, if he is having formed hard BMs you might try giving him some extra pear or apple juice through out the day to help soften it up a bit.

Have you tired giving him coconut water? Try that for a few days and see if it helps with the dehydration. Also some cranberry juice, or the supplements would be even better to help with bladder health.

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#10 of 87 Old 09-20-2009, 05:42 PM
 
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He is seeing a pediatric urologist (group) at a children's hospital. We haven't tested for kidney reflux, and I'm rather resistant to put him through that procedure. I told them I won't do it unless DS was completely anesthetized. They said it doesn't work that way, so we are deadlocked.
I understand your hesitation, but the VCUG test hurt less than a UTI where he has blood in his urine.

If he does have kidney reflux (depending on the level) he might just be put in long term antibiotics, so why not just see about doing that now until he gets them cleared up?

The danger with kidney reflux is that not only does it cause UTIs but each and ever UTI causes severe damage to the kidneys and if its a higher grade KR than it will eventually lead to kidney failure.....my aunt and my great grandmother both had to have kidney transplants because of KR.

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#11 of 87 Old 09-20-2009, 06:01 PM
 
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He is seeing a pediatric urologist (group) at a children's hospital. We haven't tested for kidney reflux, and I'm rather resistant to put him through that procedure. I told them I won't do it unless DS was completely anesthetized. They said it doesn't work that way, so we are deadlocked.
I understand the Mama Bear instinct, but the pain of the procedure doesn't compare to constant pain from severe UTIs and from permanent kidney damage. If it goes untreated, he could end up with a future full of painful procedures that may have otherwise been avoided by going through this one.

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#12 of 87 Old 09-20-2009, 06:02 PM - Thread Starter
 
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So why can't they do it under anesthesia?

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#13 of 87 Old 09-20-2009, 06:07 PM
 
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VCUG is horrible, I've had one, as I had recurrent UTIs as a child. But I still think it is worth doing it to try and find the underlying cause, and there most certainly is one, for him to have that many UTIs in a year.

It does sound like the doctor is going to be pushing for circ soon if they already diagnosed phimosis, which is ridiculous, because he's 5 years old and it's completely normal for him to not be retractable yet.

As far as I'm aware, the studies showing a reduction in UTIs only applied to the first year of life *anyway* so I'm not sure there's enough evidence to suggest being circed now would help.
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#14 of 87 Old 09-20-2009, 06:10 PM
 
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So why can't they do it under anesthesia?
I don't know the answer to that but at this point I'd go for the VCUG. Unless there is another way to test for reflux.
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#15 of 87 Old 09-20-2009, 06:16 PM
 
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My circumcised husband had numerous UTIs as an elementary aged boy - numerous - he indeed had reflux.

I would never recommend a VCUG for just one or two UTIs, but if he has had several, then it really is warranted. My husband ended up having surgery to correct his problem. Frequent UTIs and reflux should be taken seriously - my husband's sister also had reflux, and lost one of her kidneys because of it.

I truly understand why you do not want to traumatize your son - a VCUG is invasive - both of my sons went through it - I refused a follow up VCUG because it is so traumatic and my son (who was diagnosed with reflux), was not having repeat UTIs, however, I would have consented if he was having multiple UTIs because you don't want to mess around with reflux if it is serious, like I said, his aunt has only 1 kidney because of it.

Talk to your doctor, see if they might be willing to compromise and give him a sedative to reduce the trauma, but seriously, it is not normal for a 5 year old to have multiple UTIs - it's not uncommon for them to have 1 or 2 because they often touch their anal area, then their penis, but multiple UTIs are just not common. All the other suggestions like cranberry juice and probiotics are great, but if there is an anatomical problem going on, you want to find out sooner rather than later.
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#16 of 87 Old 09-20-2009, 06:21 PM - Thread Starter
 
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But do you think the 'anatomical' problem might be that he is squishing the underside of his penis with his waistband while he urinates?

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#17 of 87 Old 09-20-2009, 06:23 PM
 
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There is some evidence that constipation can cause UTIs, so we need him to eat more fiber and less protein. Yeah well, it's pretty hard to get a 5yo to eat a plethora of vegetables.
I would caution you against pushing fiber on him (extra veggies are fine of course), especially any kind of 'supplement' (see www.fibermenace.com). The constipation may be another symptom of what is going on, which sounds like a major imbalance in his flora, which starts in the gut but affects the whole body. Pure (unsweetened, unpasteurized if you can find it) cranberry juice, very strong probiotics (I recommend BioKult or Garden of Life), homemade yogurts (preferably from raw milk) are a start. I would start adding apple cider vinegar to his baths. He needs his protein and fats, and I would not convert him to vegetarianism at this point. But making his food the highest quality available (grassfed, organic, unprocessed) would be helpful.

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#18 of 87 Old 09-20-2009, 06:29 PM
 
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one more comment - has your son had a renal ultrasound yet? This is not invasive and does not hurt. My 8 year old just had one and he thought it was cool, he got to see his kidneys on the screen and everything.

anyhow, before consenting to the VCUG with my 2nd son after a UTI, I had a renal ultrasound done first (since we had a serious family history of reflux problems)- the renal ultrasound did show reflux, so that is when I consented to the VCUG to determine the grade of reflux he had. I refused all follow up VCUGs because again, he didn't have any further UTIs so it seemed a moot point. But I did do a follow up renal ultrasound later, and since it didn't show problems, no follow up VCUG for us.

If you haven't done that, you could start there and see what those results show.
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#19 of 87 Old 09-20-2009, 06:35 PM
 
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But do you think the 'anatomical' problem might be that he is squishing the underside of his penis with his waistband while he urinates?
No, I don't. Its either due to the constipation (which stool is pushing up against his bladder causing pockets of urine to stay in the bladder) or its something internal.

Has the bacteria always been ecoli?

My daughter has had VCUG's, Urodynamic Studies and Renal Ultrasounds numerous times. She has never been scared or in pain during the procedures. Well with the Renal she giggles because of the gel on her.

If this is being done at a Children's Hospital they have Child Life Specialist that will keep your child comfortable and happy during the procedures.

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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.

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#21 of 87 Old 09-20-2009, 06:40 PM
 
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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?

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#22 of 87 Old 09-20-2009, 06:48 PM
 
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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.

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#23 of 87 Old 09-20-2009, 06:50 PM - Thread Starter
 
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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.

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#24 of 87 Old 09-20-2009, 06:54 PM - Thread Starter
 
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So do UTI's come FROM the kidneys???

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#25 of 87 Old 09-20-2009, 06:59 PM - Thread Starter
 
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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.

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#26 of 87 Old 09-20-2009, 07:02 PM - Thread Starter
 
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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?

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#27 of 87 Old 09-20-2009, 07:12 PM
 
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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.

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#28 of 87 Old 09-20-2009, 07:15 PM - Thread Starter
 
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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.

Tis the season, for hot apple cider!
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#29 of 87 Old 09-20-2009, 07:17 PM
 
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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.
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#30 of 87 Old 09-20-2009, 07:24 PM - Thread Starter
 
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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.

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