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    Old 07-30-2005, 09:55 PM   #1
    brewzoo68
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    Red face 8yr old boy with blood in urine

    I am looking for anyone who has had experience with what in the world this could be....

    A little history on my son .....
    he was a preme twin
    at the age of 2 he was potty trained
    at the age of 3 he started having wet accidents during the day and night
    he continued to have accidents until this year (he's 8 now)
    He has been going to an urologist since he was 5 and put on oxybutin to help his bladder control his urine
    he had kidney infections or UTIs about every 4 months that made him sick as a dog
    this year the dr. did a VCU and discovered stage IV reflux, and a diverticulum in his bladder and an irritated, thick bladder wall
    My son had surgery in April ... ureter implant and removal of diverticulum
    All seemed to go well, and since we have been on the bladder medicine and he has had very little occurance of wetting accidents

    In July my son came to me saying that he is peeing blood.
    I watched him and, good grief, it was bright red like Kool aide, we took him to the ER and they said it was a UTI, gave him antibiotics, and told us to call his urologist the next day...By the way, my son did not run an fever, act lethargic, or anything. He was just peeing blood.

    The next day he had no visible blood in his urine. We still went to the Urologist, who did an ultrasound and said he couldn't find anything. He really didn't know what was going on. So he did a UA and it came back normal. We dismissed it as just one of those unexplained things that happen.

    Now, yesterday my son says he's peeing blood again. This time it was dark, like coffee. I got him into the urologist and he got a sample for a
    UA again. They have also scheduled him for another VCU and a scope. In the meantime, he is peeing with no visible blood again today. And he has been fine, with no fever, pain, or anything.

    What in the world? I am feeking out!!! what could it be? Now I am worried.

    Anyone?

    Freaked out mom, brewzoo68

     
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    Old 07-30-2005, 10:20 PM   #2
    Karen W.
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    Re: 8yr old boy with blood in urine

    Hi There,
    Well My daughter had reflux of the kidneys, that is when the urine from the bladder back flush's into the kidneys. Her left kidney is 60% damaged, her right is only 20% damaged. She is now 16 years old and we still have a yearly test to make sure it dosen't come back because it is a silent disease. We did deal with blood in urine when she was younger, I can remember her talking a sulfa drug to keep her urine steril, She had to take it for years. I would demend them to run a batch of tests, something is not right, how long ago did he have the surgury. You should always have a few steril urine cups on hand at home, so when this dose happen , you can get a sample right away, that is what we were told to do, keep us posted on the out come, now if he get bad this week end, just take him to the ER. We had to do that a few time's and they normally kept her over night. It's very unusual for a child to have a kidney or bladder infection-thats what childrens hospital had told me, there is normally a internal reason, kids don't just get them like adults do.
    Karen W.

     
    Old 07-31-2005, 08:13 AM   #3
    brewzoo68
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    Re: 8yr old boy with blood in urine

    Thanks for the reply.

    He had the surgery in April. and at that time they felt that there was no damage to the kidneys. How did they find the damage to the kidneys on your daughter? We just had an ultrasound.

    Also, he never has any signs or symptoms. No fever, etc. That is what I think is weird.

    brewzoo

     
    Old 07-31-2005, 09:34 AM   #4
    Karen W.
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    Re: 8yr old boy with blood in urine

    hI,
    MY DAIGHTER HAD ULTRA SOUNDS BUT SHE ALSO HAS THIS ONE TEST WHERE TRY WENT UP HER AND INTO HER BLADDER AND FILLED IT WITH SOME KIND OF IODINE FLUID, THEY FILLED HER ENTIRE BLADDER AND THEN SHE HAD TO LAY TERE ABOUT 30 MINUTES AND THEN THEY STARTED TO DO SOME KIND OF E-XAY, THEY HAD IT WHERE YOU COULD SEE HER INSIDES ON A T.V., THEY TOOK A BUNCH OF PICTURES AND WATCH TO SEE IF THE IODINE FLUSHED BACK INTO HER KIDNEYS, IF IT DOSE, THAT IS WHERE YOU CAN GET KIDNEY DAMAGE. MY DAUGHTER HAS ALLOT OF SCARE TISSUE INSIDE HER LEFT KIDNEY. SHE IS DOING GOOD NOW BUT WE STILL MAKE SURE TO HAVE A YEARLY TEST TO ALWAYS BE SAFE.
    kAREN W.

     
    Old 08-22-2005, 06:12 PM   #5
    nikkiC
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    Re: 8yr old boy with blood in urine

    Hi,
    My son did the exact same thing except he has absolutely no health history at all. One morning after football practice he said he was peeing blood and sure enough, it was bright red. Of course me and my husband were freaking out, took him to the children's ER and they ran a bunch of tests, all came back normal. They assume that is was post strep glomerulonephrites. A viral type illness that you get after you have had strep throat. He did have strep a month or so before that so it made sense but we have been monitoring him ever since. Since his first bout in May, he has had small amounts of rbc's in his urine (not visible to the eye) so we are going to the pediatric nephrologist this week. They are still not sure what is going on because a second round of bloodwork also came back normal. He does have some calcium crystals in the urine so they are thinking that might be a cause as well. I feel your anguish because there isnt a day that goes by when he goes to the bathroom, I cringe until he comes out and everything is ok. Good LUck and post any new news.

     
    Old 08-22-2005, 06:32 PM   #6
    brewzoo68
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    Re: 8yr old boy with blood in urine

    Hey Nicci
    Your story sounds oh so familiar. We had another UVC done two weeks ago. (the test that runs dye into the bladder and looks at his ureter and bladder function. It came back with great results. His surgery was successful. The reflux is gone and the bladder looks better. They did say that there is a residual diverticulum in his bladder, but that should not be causing the blood in his urine.
    He had a battery of blood test done. EVERYTHING came back normal, except for the strep test. Just like you, they said it was most likely post strep glomerulonephrites. But he hasn't been diagnosed with strep in months. And he has had visible blood in his urine 2 times this summer. once in June and once in July.
    Anyway, now we are on the wait and see schedule. His Doctor wants to have a scope done in the OR during an active bleeding session. That means that if he goes to the bathroom and has blood in his urine they want us to call them immediatly and meet the Dr. at the OR and have a scope done to find the source of the bleeding.
    Meenwhile, he is doing and acting just fine. Just like you, we cringe each time he goes to pee.
    I hate the "no news" that we are left with.

    Let me know what goes on with your situation. It sounds like we are in the same boat. Frustrating, isn't it?

    Thanks for posting, I was wondering if anyone else had ever had something like this. It is a little comforting that others are out there with the same expereiences.

    Joann

     
    Old 08-22-2005, 06:41 PM   #7
    brewzoo68
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    ,

    . . . . . . . .

    Last edited by brewzoo68; 08-22-2005 at 06:44 PM. Reason: duplicate

     
    Old 08-22-2005, 07:35 PM   #8
    kathya
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    Re: 8yr old boy with blood in urine

    My daughter had the same thing when she was 7 years old. Episodes of blood in her urine - no predicting when. She had tests done at Children's Hospital and ****** University Hospital in New Orleans. No diagnosis. She saw a urologist until she was 12. At that time her reg. pediatrician was on vacation when she had the blood in her urine and we saw a new (fresh out of med school) associate. He sent her to a Nephrologist at ******. After many tests he diagnosed her with Berger's disease. This was in 1986 and was a fairly new disease from what I could understand. I went to the library and read what little I could find about it. It was caused from strep throat she had had about a month before the first episode of blood. (It is now called IGa Nephropathy, not Berger's Disease.) There is plenty of information on the web and a support group board also.

    There is no cure. She was monitored every 3 months and whenever she had blood in her urine until her 18th birthday. They were concerned about her kidneys not growing properly.

    My daughter is now 31 years old and hasn't seen blood but once since she was about 18 years old. She has to drink a lot of water or she feels pain in her kidneys. She still sees a Dr. yearly for checkups, and will have to be monitored closely if she ever gets pregnant because of the increased load on her kidneys.

    From what I've read on the internet, she has done really well.

    I hope this helps - at least you can ask the urologist about this. At the time my daughter had it, it was diagnosed by process of elimination. She could have had a kidney biopsy, but her Dr. didn't think it was necessary.

    Good luck to you and your son.

     
    Old 08-23-2005, 11:49 AM   #9
    Kyrin
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    Re: 8yr old boy with blood in urine

    I just got back from the ER with my 4 year old son who for the first time ever peed blood last night. At first it was like red kool aid, then at the hospital it was like dark tea or coffee. They did blood tests and everything was fine. They said it might be post strep glomerulonephrites. He sees his pediatrician tomorrow and we go from there. It really scared me because he is a VERY active child and I never know when he gets hurt. He as had stitches, poked a hole in his throat from jumping with a stick in his mouth, put a hole in his eardrum with a plastic toy, and numerous other things and never complained that he was hurting. So of course when he peed blood, I freaked thinking he hurt himself. I hope I find something out and he is ok....
    Kyrin
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    Old 08-23-2005, 01:01 PM   #10
    nikkiC
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    Re: 8yr old boy with blood in urine

    Dear Joann and everyone else in our shoes,

    My pediatrician said that although you dont see it every day, peeing blood is more common than people think. He sent me a bunch of research on it and most cases of hematuria, the cause is never known. They basically try and rule out anything nasty and go from there. As far as IgA nephropathy, that was one of our big concerns because my husband(35) was diagnosed last year after a routine exam showed protein and blood in his urine. He really has no treatment, just monitoring it and watching for high blood pressure but anyway, the doctors tested for that and that also came back negative. (he has never had protein in his urine).

    Thursday we go to get an ultrasound and see the nephrologist at Children's. After talking to a few friends about it, one of them said her son went through the same thing and nothing ever came of it.

    Again, the worrying is brutal because although it has only happened once, I dont think i will ever be content until I look in the toilet myself. Sounds gross or weird but I know you all know what i am feeling. I will continue to post as I get any info, take care and good luck. Nikki

     
    Old 08-24-2005, 06:48 PM   #11
    brewzoo68
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    Re: 8yr old boy with blood in urine

    Hey Nikki

    Let us know what happens about the dr. visit and the ultrasound. Is is an external ultrasound or internal?

    I haven't even thought about all this IgA nephropathy stuff. In fact, I haven't been told anything about it. The only thing that the urologist said was that some kids have blood in thier urine after they get a strep infection. And he was so "matter of fact" too. As if this happens quite often. However, when I ask around about it, no one has ever heard of it or they say its not common at all. Then, I am confused about whether this is a one time deal or something that might happen everytime he is exposed to or contracts the strep virus.

    Now I wonder if I should be seeking a pediatric nephrologist. So far all I have been taking him to is the pediatrition and the pediatric urologist. I don't understand, am I being too dramatic and worried? It just concerns me that the doctors are so "matter of fact" about not knowing what is going on.

    Let us know how your dr. visits go.

    Joann

     
    Old 08-25-2005, 12:58 PM   #12
    nikkiC
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    Re: 8yr old boy with blood in urine

    Hi Joann,

    We just got back from the kidney clinic and his pediatrician. All went very well, better than we expected. Brody had an external ultrasound done on both kidneys and it was negative for stones, the size and shape of both kidneys were also normal. Once in the pediatric nephrologists office, my son's urine tested negative for blood as well. Since he has no other symptoms or history of any health problems and this gross hematuria has happened once, they believe it has resolved itself and do not anticipate it to happen again. They also can not say for sure why it happened but I will tell you what they told me. First, if it was from strep (which in my son's case is not as likely because of the time span) it would have happened within a few weeks of the strep infection, my son's was 2 months. However, you can get hematuria from any viral infection and they call it a post viral glomerulineprhitis and that too resolves itself and really it is just luck of the draw as to what kid would get it. The other thing they are looking at is crystals/minerals in his urinary tract or kidneys that are causing a rupture. The ultasound showed no stones but if they are just crystals, only a ct scan would pick that up and they would recommend that if he had another bout of hematuria(bright red visible blood). And lastly is the IgA nepropathy to consider. They would consider that more likely if he has recurrent bouts of hematuria and that sounds like your child if I am not mistaken right? They recommend that if a child is bleeding when he pees, it is important to immediately see a neprhologist to test the red urine and that is almost foolproof in figuring out what is going on. This doctor looked at his urine under the microscope himself while we were right there. Also, you mentioned you were seeing a urologist. I believe that if you child peed red from start to finish, then it is more kidney related than if he started peeing normally then it turned red or started off red then turned yellow that is more urology's dept.

    Did you child have any protein in his urine? That is a significant finding and if he did, you should definatley see a nephrologist instead of urologist. Also important is did he have any swelling in his hands or feet, or high blood pressure. My son did not have protein or any of the above and like I said, since everything has came back completely normal, they are really scratching their heads as to giving it an exact diagnosis.

    I hope my story helps you out and I am so glad I have someone to talk to that knows what I am going through. Continue to keep me posted and I will do the same. NOt only am I am mom with a child that peed blood but I am a nurse with a passion for diagnostic medicine.

    Take care Joann

    Nikki

     
    Old 08-27-2005, 03:05 PM   #13
    brewzoo68
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    Re: 8yr old boy with blood in urine

    Hi Nikki,

    Congratulations! It sounds like your visit was very positive. That's great news. THanks for all the info too. It sounds like you asked a lot of questions.

    There is no news here. My son, Hayden, has been doing great. He has not had any more blood in urine episodes that we know of. He has, however, had some wetting (damp underwear) accidents though. He is off of the Levilin and I am not sure if that with the combination of starting school and being in a new routine has caused him to be unable to hold his urine. Don't get me wrong, this wetting is nothing like it was before the surgery. Much Much better now.

    As far as what all has been found in his urine, I am not totally sure. I do know that there was blood, but there was no elaboration on anything more. All I know is that he tested positive for step in his blood work after the last incident. Yet, he was NEVER sick during or before. No fever, no sore throat, nothing. I have no idea about the protein. It makes me want to call his urologist and ask. We are still on the orders to watch for more gross hematuria and call immediately for a scope to be done. I just wonder if we should be seeing a neprhologist, or if I am over reactive.

    I am on the wait and see mode. Hopefully, we will just continue to wait and never see anything. That would be good.

    I am monitoring the bladder control, though. I just hate that he is so young and still has problems controlling his bladder.

    Again, thanks for all your info. It is very appreciated.

    Joann

    Last edited by brewzoo68; 08-27-2005 at 03:06 PM.

     
    Old 08-29-2005, 01:10 PM   #14
    nikkiC
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    Re: 8yr old boy with blood in urine

    Joann,

    I would think that if there was protein, they would have informed you, they certainly would have tested for it.

    And No Way do I think you are overreacting. When it comes to our kids and seeing them urinate blood, nothing could be scarier at that moment.

    Even my pediatrician is still cautious and said that he feels confident that it is not a nasty kidney disease but he wont feel 100% until years go by without another episode. He does not like to leave things unexplained and neither do I but we are in a situation where it is pointless to poke and prod my son when he is perfectly fine at this moment. So for me, I will just wait and see. For you, you do what you think is best. I would totally want to know every test and every result and do everything possible and if I had to consult half of the staff at Children's hospital, I would. Our kids are precious so go with your gut. It sounds like Hayden is also off to a great start so let's keep our fingers crossed they continue like this. Keep me posted and take care.
    Nikki

     
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