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  • 4 year old - Pseudomonas - Citrobacter - Cipro x4

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    Old 05-06-2002, 07:42 PM   #1
    poppy71
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    Question Reflux - 4 year old - Cipro - Pseudomonas - Citrobacter

    I have a beautiful little girl who is four years old. She has been having recurring UTI's which are getting increasingly hard to get rid of.
    The first few were treated with just regular antibiotics, but in January she was found to have a Pseudomonas infection. That was treated with Cipro and she was placed on a daily dose of Macrodantin, but the Pseudomonas came back just over a month later. Again she was treated with Cipro, taken off of Macrodantin and placed on a daily dose of Septra. Again she became infected a month later. This time the infection was a Citrobacter infection. She was placed on a third round of Cipro, but this time it came back just two weeks after coming off of the Cipro. She was given a prescription for a fourth round of Cipro. Prior to taking this round of Cipro she was given three days worth of an Intra-Muscular antibiotic which we were told would kill anything.
    She is on her 6th day of the Cipro, but she is showing symptoms of another UTI. We go for the umpteenth urinalysis in the morning.
    We just had a Cystogram done, where we found out that she has Reflux into her right Kidney. This did not show up when they did her VCUG a few months ago. Also what has shown up both times is that her bladder is very large and shaped like an elongated number 8. We are now scheduled for another ultrasound and a surgery to hopefully correct the reflux.
    Has anyone had experience with something similar? I am very concerned about the possible effects to her Kidneys from these infections. Does anyone know of what I might do to help ward off new infections? I have now become a germophobe. My daughter takes showers only now as I don't want her "sitting" in water. I still bleach my tub out nightly, she is on a schedule to go potty every two hours, she has her own potty seat again... Is there anything else I could be doing?

     
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    Old 05-06-2002, 07:50 PM   #2
    poppy71
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    Also I would like to add...
    We have been dealing seperately with an Endocrinologist because of her growth. She was born in the 90th percentile and over time has dropped to where she is now. She is below the 5th percentile. As the Urologist was not finding anything wrong with her kidneys at that time renal problems were ruled out, yet we were not finding anything else that could be a cause. My poor baby has been stuck with more needles in her four years than I have in all of mine...
    Again, any experiece with something similar? Is there anything else that I should be asking the doctors to check that you know of?

     
    Old 05-08-2002, 11:27 AM   #3
    poppy71
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    Sorry, another addition. I was reading over some of the notes that the Urologist had made and found another bacteria called enterococcus... Familiar with this one either? Anything that I have found on the internet about it has been pretty scary...

     
    Old 05-09-2002, 11:04 AM   #4
    bluegirlie
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    I'm so sorry to hear about your daughter's problem. I have been living with these infections for 3 years now. From what I've read, some children get them over and over again because they have trouble passing all of their urine when they go to the bathroom. I think that this problem is something that can be corrected. In the meantime, you may want to have your daughter drink a glass of cranberry juice every day and make sure she goes to the bathroom often.

    I can also tell you how my urologist is treating me for the moment. I have been on macrodantin for 2 months now. He thinks that sometimes, the bladder infection is not only in the bladder but also lodged in the urethra. So, you may get rid of the bladder infection, but it always comes back because of the bacteria in your urethra...this could also be a possibility.

    I hope they are able to help your daughter. I know how terribly painful these infections are.

     
    Old 05-09-2002, 10:56 PM   #5
    poppy71
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    Thank you... I bought her 100% cranberry juice, and I have been giving her that and purified water to drink. Nothing else. Also, I bought one of those digital timers, and she is on a schedule to urinate (or at least sit down and try) every two hours. She is really being a good sport about it.
    I hope that all of this will help her. I have never had a UTI in my life, and don't know how painful they are. I can only imagine from her shrill cries as she tries to urinate.
    Her VCUG did show a pooling of the urine in her bladder after she voids. We always try to have her sit and wait to get some more out.
    As a mother, this is killing me. I don't know how mothers of children with the more serious illnesses can do it.

     
    Old 05-19-2002, 09:25 PM   #6
    korken
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    Poppy,

    As a child I had constant UTI's and drank cranberry juice several x's daily with honey. My mom was told that honey was a natural infection fighter. When I was 19 I had my uretra(sp) stretched and have had that done a few times since and after child birth that can stricture it again.

    I still don't always empty out and found that leaning forward and to the left and putting my hand between my abdomun and leg for extra pressure has helped me get more out.

    I know what it is like to have kids with problems mine are boys. One of our son's got so bad that it started an infection on his skin a large purple red rash on his abdomun and the genital region that was I can't remember what they called it. It was over a year till it was under control. For the rash an elderly neighbor said to keep off his diaper all day and let him air and go into the sun for a few mins daily to let the su heal the rash. It worked and the medicines hadn't helped. He had sugery to enlarge the urethra and the opening at the end of his penis and luckily that worked for him. He was on many different antibiotics and testing and I woundered about the amount of radiation he was exposed to for xrays and fluracopes. They said it wasn't that much. He still drinks cranberry juice and honey to this day and is now 21 and doing great.

    We also have a 3 1/2 year old that has screemed out in pain since birth while he sleeps. The peds ignoired me when I asked if he had the same problem as one of our other sons and myself. They said no and said it was night terrors. We have been to 5 peds offices and had about 10 different docs in total see him.

    We saw a new ped this past week and she said that he has the same problem as we had and that due to the size of boys penis's when young it is hard to see this problem because the opening is so small when that young.( I think that she was covering for the others not finding the problem) He now will be seeing a urologist( what took them so long, why didn't I just go to a urologist with him) and will be having his stricture stretch and his kidneys checked next month. I hope it takes away his pain it is horrible to hear him in so much pain every night. Then he can't go and wets the floor or his bed and he gets mad with himself for doing this. We say it's okay but, he just cries. We also were told that he can't have peanut nuts or anything else with caffine. She said that the bladder stretches because it doesn't empty out and that it causes a visous circle of the bladder being over stretched and pain. I just pray that this is all it is.

    Good luck to you and your daughter.

    ------------------
    Take care ~Kim & Gary~

     
    Old 05-27-2002, 06:41 PM   #7
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    Hi Poppy,

    I have a 21 mo old DD with bilateral grade 3/4 reflux. I am new to all of this since she was diagnosed just a month ago after only one UTI. Your DD sure has been through a lot! I am not very knowledgable on this subject yet but I've found another great board that you might get some answers from. e-mail me and I'll give it to you since I don't know if it's OK to post the link here.

    Aimee

     
    Old 05-28-2002, 10:40 AM   #8
    poppy71
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    Thank you so much Kim...
    Your poor boys! It is so hard to see your child hurting. I will have to try the cranberry and honey. Now that you mention it I think I remember hearing that before.
    My girl had what the doctors called night terrors when she was little... She would just be screaming like she was in pain. I kept telling the doctors that I didn't feel like she was frightened, she seemed to be more in pain.
    Thank you so much, and good luck with your little boy!

    Mark and Poppy

     
    Old 05-28-2002, 07:21 PM   #9
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    Poppy and Mark,

    Let us knaow how she is doing. I hope she gets it all taken care of soon. :

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    Take care ~Kim & Gary~

     
    Old 06-06-2002, 06:22 PM   #10
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    I had kidney reflux at birth but noone found it till I was in my 30's. Have they checked to see if her ureter is out of place? Mine was and I wound up losing my right kidney because they never found it when I was young with all the test they did(except the cystogram and cystoscope.They tried to repair it with surgery to put my ureter in it's right place but still it was too late and I still lost my kidney within 6 months after. So please don't let them give up and just keep giving her meds. That is not gonna correct the problem if that is what it is. My left kidney also has a cyst on it that grows very little in a year but not cancerous. I wish you well. God Bless

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    rjwarren

    [This message has been edited by rjwarren (edited 06-06-2002).]
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    Old 06-06-2002, 09:15 PM   #11
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    Hi Poppy and Mark,

    I took our 3 1/2 year old to see the urologist at CHOP Childrens Hospital of Phila. He is going to have his urethra opened and they said that he needed to see a gastro to. He sees one at CHOP in July. They said that his infection is cleared, Yep, he had a UTI to and that it is a good idea to see a gastro to. I don't know if this will help you but, I thought with all your sweet baby girl is going through I should tell you this.

    Talked to you on the Urology board. Good luck and keep us updated.

    Update to you two above who answered me. My doctor called to night and said I should see a Nephrologist and a urologist. Okay , why not. The more the merrier and I want to find out whats up. Poppy have you taken her to one of these kidney docs (Nephrologists)?
    ------------------
    Take care ~Kim & Gary~

    [This message has been edited by kim (edited 06-07-2002).]

     
    Old 06-07-2002, 12:19 PM   #12
    poppy71
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    Hi there! Sorry I was out of town...
    rjwarren:
    Yes, as a matter of fact, they did just find out that her right ureter is out of place. They have her scheduled for surgery on the 17th. They are going to move both of her ureters to a new position. Her urologist says that sometimes if they only work on one, that they can develop reflux in the other. Also, it looks like her right ureter has an opening that is much larger than it should be.
    They are saying that this may not stop the infections, but at least we will have her kidneys protected.
    She seems to be doing well right now. This is the first time in a long time that she has gone longer than a week or two without an infection!
    Than you so much for the replies! I will post again after her surgery!

     
    Old 06-07-2002, 02:06 PM   #13
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    I thought that might be the problem. God Bless and good luck sweetie. They are fixing her early so she will be fine. I wish they would have found mine that young then I would still have both of mine.My prayers are with her.
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    Old 06-12-2002, 03:21 PM   #14
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    I hope you are still checking back here. I am new to this board. My daughter (now 4 years old) had a pseudomona UTI one year ago. They immediately hospitalized her, gave her 3 days of gentomyacin (sp?), discharged her and gave her 10 days of outpaitent IV therapy. Zosyn was the antibiotic used for the outpatient IV - twice a day. Then infection was not all cleared, so they gave her 10 days of Cipro. Then we took her to a pediatric urologist. She had a VCUG and was diagnosed with Grade 4 bilateral reflux. She got another infection (E Coli), we treated that, and we kept her on Macrodantin until surgery in Sept. 2001. She did fine after surgery until Jan. She has had two infections since, so we just took her back to the specialist. The surgery was successful, but her bladder is thick and very irritable from all the infections, etc. She is now on Macrodantin and a bladder relaxant. We are also having to do lots of dietary modifications to get her bladder to settle down. I know what you are going through. I still find myself horribly frustrated by all the antibiotics - and the mood alterations they cause her - and the constant wondering if we are doing enough. It is no fun to watch your daughter go through all of this, especially the surgery. Please let me know how you are doing!

    Andrea

     
    Old 01-21-2003, 05:11 PM   #15
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    I saw some mention of mood swings caused by antibiotics. My daughter is 7, has had a recurrent UTI problem for 5 years, and is currently on Macrodantin (about 2 years). She was off the Macrodantin for about 2 months, and we noticed an improvement in her moods, her school work, and her speech. Now that she's been back on the medicine for 3 weeks, all the same problems are coming back. Her doctor insists that the problems are not caused by the Macrodantin. Has any one else noticed mood and/or concentration changes when on Macrodantin?

     
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