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  • 3 month old has had 3 uti's and two bouts of septicemia - Please help!

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    Old 10-27-2009, 07:01 AM   #1
    missang24
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    Angry 3 month old has had 3 uti's and two bouts of septicemia - Please help!

    Hi there,

    I am actually writing this from the hospital right now. I am at a loss of how to deal with all of this.. The last 3 months have been incredibly stressful and we have almost lost our infant son on 3 different occassions.

    He has had 3 confirmed UTI's. 2 of which led to a kidney infection and ecoli sepsis. We have the pediatrician in our area doing all kinds of tests, but they just recently (since being admitted this time for sepsis) have started taking it seriously. He is referring us to a specialist out of town a pediatric urologist.

    Basically my questions are :

    1. I have been reading a lot about septicemia, and it's potentially life threatening especially in babies. The pediatrician after the first incident told me that he doubted that it would happen again because my son would be older and should be able to fight it off. Do you think that he should have taken this more seriously and atleast did some follow up urine tests?

    2. What are complications that could develop from having 2 different episodes of sepsis? My son is only 3 months old and has had it twice now.

    3. He has been placed on prophylactic antibiotics until they can get to the bottom of this. My worries are that the bacteria will become resistant to these and we could end up in more problems than we are now.

    4. I'm very frustrated with the care that he has received thus far. Since the first incident, after being discharged when he was only 7 weeks old I had taken him back into emerg about 3-4 different times suspecting another UTI. One of those times he did have another confirmed UTI and was placed on oral antibiotics and sent home. The pediatrician (same one as now) almost made me feel as though I was crying wolf and made me feel very silly for continuing to bring him back. I know now that I was right and that I had every reason to worry.... What do you think about this behaviour of this pediatrician? Every day that we have been in this hospital he comes in the morning to see us and he brings about 2 med students with him and asks them a bunch of questions about everything, they are left stunned and don't know the answers and I feel as though I have gotten none of my questions answered!! I don't want my son to be used as a training device, this is serious stuff!!

    I would just appreciate some advice as I am having a real hard time coming to terms with going home now. I am afraid that we wont be so lucky if it happens again.

    Please help..

     
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    Old 10-27-2009, 07:03 AM   #2
    missang24
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    Re: 3 month old has had 3 uti's and two bouts of septicemia - Please help!

    I also wanted to mention that he has had a VCUG done w/ the first incident and it came back negative. He has also had two ultrasounds done on his kidney and bladder.... They are repeating these tests.

    They have also said that we should get him circ'd, which I totally agree with.

     
    Old 10-27-2009, 07:19 AM   #3
    Linda1652
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    Re: 3 month old has had 3 uti's and two bouts of septicemia - Please help!

    I check this site from time to time because my husband had sepsis from a UTI a year ago. He got it from a catheter initially. He was on antibiotics and we thought it was cured. Then, he got sepsis---it went to his kidney. They determined he was retaining urine from an enlarged prostate. He was not completly urinating the infected urine, so the infection was lingering.

    I know a baby is completely different than an adult, but I doubt if anyone else is going to respond to this unique situation. I think it is crucial you see a specialist and I hope they can find the cause. I am thinking the baby also has some sort of obstruction which is causing this.

    My husband was on IV antibiotics for 3 weeks. I had to hook him up at home. Maybe that is what should be done for your baby. Just oral antibiotics weren't sufficient for sepsis. My husband's bacteria was enterococcus. I believe it is related to feces, also.

    I don't think you are overreacting. Sepsis is very serious. Not all Doctors are knowledgable or competant. I hope an infectious disease Doctor is consulting, also.

    Please write again!! I hope this helps even a little.

     
    Old 10-27-2009, 07:24 AM   #4
    missang24
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    Re: 3 month old has had 3 uti's and two bouts of septicemia - Please help!

    Thankyou so much for responding!! I really appreciate that. I do too agree that he should be on IV antibiotics for a lot longer. He has only been on them about 7 days now and they are sending us home today after another VCUG is done.

    Just out of curiosity why do you think that oral antibiotics wont be sufficient, I also agree with this out of complete nervousness, but I was wondering if you could ellaborate.

    I know that this pediatrician takes his sweet time doing things, and he says that we wont get to see the specialist until they have the results of all the bloodwork, tests, etc.. This could be weeks from now. Im a bag of nerves and I really am at my whits end for what to do.

     
    Old 10-27-2009, 08:26 AM   #5
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    Re: 3 month old has had 3 uti's and two bouts of septicemia - Please help!

    What is a VCUG???

    Did you Google sepsis??? Everything I read about it said that it is treated that way. They take a blood test called a "trough" after a week, to make sure there is enough of the antibiotic in the blood. If there isn't, they increase the dose. I think 2 weeks of IV is usually enough. My husband was on the IV for 3 or 4 days in the hospital. When he was sent home, the IV dose was about 1/2 of what it had been. I questioned it, but figured they knew what they were doing. When he had his first trough, the amount in his blood wasn't enough, so they increased his dose, and had him on for extra time. I was really annoyed, but didn't have the nerve to bring it up to the infectious disease Doctor Dave had to go back to see him for a urine test, to make sure it was clear. He was in the hospital three times.....first for the spine surgery which started this (because of the catheter), then he was admitted for the UTI. Actually, they probably thought the infection was from the surgery, but it was the UTI. Then, he was admitted the third time because it went to the kidney. It was a total nightmare. But, yours is even worse, because this is your baby!!!

     
    Old 12-08-2009, 10:28 PM   #6
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    Re: 3 month old has had 3 uti's and two bouts of septicemia - Please help!

    hello I also have a 15 week old that has been hospitalized 2 times with positive UTI's and blood cultures positive and sepsis found e coli and just recent enterococcus ...he had high fever and crying for 3 days can you please help me and tell me what I can do so that my son does not end up back in the hospital.....I am so scared that he will not be able to get thru the next scare...please help let me know what you have done for your son thank you.....

     
    Old 12-08-2009, 11:19 PM   #7
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    Re: 3 month old has had 3 uti's and two bouts of septicemia - Please help!

    Hi, my son is 8 months old. Spend 2 days in Hospital with fever. Also he had a UTI. What causes it? What did Dr. tell you?

     
    Old 12-11-2009, 06:21 PM   #8
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    Re: 3 month old has had 3 uti's and two bouts of septicemia - Please help!

    If there is alot of uti's you should talk to your dr. about testing for Kidney Reflux. If undiagnosed it can cause alot of damage. My dr. tested my daughter when she was 1 "just to be safe" she had, had a lot of UTIs and it came back grade 4 Kidney Reflux. This is a perfect example of why it is better to just be safe. They gave her preventive meds for a year and it cleared up even though grade 4 usually requires surgerie. she is 6 now and the UTIs have started again so are restarting process again.

    Also a VUCG is a test they use to diagnois problems with the uiranary track. they use a cathader to insert dye through the track ( backwards from the normal process) so they can get images of the process. I have had this done several times since i was kid, it doesn't hurt but is very uncomfortable.

    Last edited by jujubean7929; 12-11-2009 at 06:34 PM. Reason: added more info

     
    Old 12-12-2009, 12:24 PM   #9
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    Unhappy Re: 3 month old has had 3 uti's and two bouts of septicemia - Please help!

    thanks for responding to my post....my son has been seen by 4 doctors so far and 2 have talked to me about Vcug and 2 other type of scans. Also my son has had 2 renal ultrasounds both came up normal no renal scarring. How do they check for kidney reflux? I will talk to the new doctor on tuesday and ask him , the new doc also asked me to not give my son the septra that was perscribed by the hospitals on call dr. I am very confused because I think the Septra will prevent a new infection. I also read some really scary side effects taking Septra so I have stopped giving it to him. I told the dr. that I just want to do what it takes to keep my son out of ER he told me that we cannot do anything because he does not know what was really going on with my son because he was not diagnosed correctly. The on call dr. diagnosed him with upper resp. infection with sepsis. Which does not make any since to me because the dr. told me it was a positive UTI with enterococcus pathogens found in his urine also that he may have had meningitis because he showed all the signs but that he could not conclude because i refused the lumbar puncture. my son was in pain he cried for 3 days non-stop and would cry even louder when we would move him or pick him up his vitals were up to 215 over 155. I am so confused and just totally drained mentally n physically...so many different opinions from 4 doctors who do I trust to make the right choice about my sons treatment. I guess I will just wait till he wakes up in pain again and with a high fever ..go back to ER and addmitted over and over again for weeks at a time. This is awful!!!!!!!!!!

    Last edited by worriedmommy1; 12-12-2009 at 12:26 PM.

     
    Old 12-13-2009, 09:07 AM   #10
    missang24
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    Re: 3 month old has had 3 uti's and two bouts of septicemia - Please help!

    I was the original author of this post. First of all I want to say that I 100% completely understand what you are going through right now. It's almost like we are in the same boat with our sons.

    We are like you in the fact that we have seen multiple doctors and nobody knows what is going on with him. He has had 3 renal ultrasounds, 2 VCUG's, plenty of blood tests and we have been hospitalized twice in which he had to receive I.V antibiotics.

    Jacob is now receiving prophylactic antibiotics, and he will be on them for one year. He is 5 months old now.

    We just saw a specialist (a Pediatric Urologist) for the first time this week. They admitted that they don't know exactly what is wrong with him, but they know that there is nothing anatomically wrong with him.

    They really do suspect urinary reflux, but both vcug's have come back negative. We are scheduled for another one in a few months.

    The results of the last renal ultrasound came back while we were at the specialist and he said that his bladder does not quite look normal, they say it looks as though it is working hard to empty. They also say it is very possible that he will get another uti again even being on the antibiotics (Novo Trimel).

    We have been through alot with the antibiotics they put him on, they cause massive diarrhea and C-Difficile (gut infection for being on prolonged antibiotics) was ruled out. The diarrhea has subsided a little bit.

    I know the utter frustration you are feeling while getting a million different opinions and no answers. We still have no answers. I guess we may never get answers but I am coming to terms with the fact that I will ALWAYS be on edge and always suspecting things when my son starts acting different.
    Remember you are your son's advocate and you need to stand up for your rights as a parent and your son. When they are telling you things you don't understand, make sure you ask ALOT of questions.. I don't care if they think I am annoying, I'll ask as many damn questions until I am satisfied that I know what they are talking about. It's makes me feel comfortable knowing I am doing everything I can to inform myself and possibly help save my son's life again.

    We've almost lost him twice now. It's heartbreaking watching your child sick and helpless but each time I have recognized the signs of sepsis and got him to the ER quickly. I know what to look for now but unfortunately the symptoms that are presented often mean that sepsis has already kicked in and it's in the beginning stages.

    We've also talked circumcision w/ the specialist. They will not agree to that unless Jacob has another infection. It's ridiculous, you'd think they would want to do everything possible to keep him from getting septic again but they have to wait for him to get sick again to do it?? Tell me how that makes any sense.

    Anyways sorry this is long winded, I just wanted to tell you a little more about our story and how things are going. I would love to chat with you possibly through email and maybe I could provide some comfort to you w/ the similarities of problems are two boys seem to be having.

    Last edited by moderator2; 12-13-2009 at 02:51 PM. Reason: please do not solicit pm's, as per the posting policy

     
    Old 12-13-2009, 09:25 AM   #11
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    Re: 3 month old has had 3 uti's and two bouts of septicemia - Please help!

    I would take him to a different hospital ...I'm not sure how Canada works but you are at a teaching hospital and sometimes that isn't the best treatment avail. Do you have a childrens hospital or call for a second opinion. You have every right to expect they answer your questions and you have every right as a mom to champion your infants medical care...if not you then who. I would be so in their face with questions and an expectation for an answer however I know nothing of your healthcare system but i would be looking for someone else.

     
    Old 12-13-2009, 12:33 PM   #12
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    Re: 3 month old has had 3 uti's and two bouts of septicemia - Please help!

    Yes I totally agree. We are in Ontario, Canada. We have not been to a teaching hospital. The first ones we went to were local and that's where we have spent both E.R admissions. We have actually just gone down to the London Ontario Childrens Hospital this week.

     
    Old 12-13-2009, 01:46 PM   #13
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    Re: 3 month old has had 3 uti's and two bouts of septicemia - Please help!

    First I would like to say thank you for your reply, I feel so helpless searching the internet for answers only to come up with only a few ideas of what is going on with my son. This whole situation with my son has me on edge , crying and praying for answers seems to be what I do best.

    I try to think of ways that could possibly prevent another sepsis scare. I was wondering if having blood work like the CRP and of course CBC checked every 3 weeks could possibly catch the start of an infection before the bacteria has a chance to get worse would help? Do you have your son's blood checked often and if you do what do they test for?

    I was told by my son's new Pediatrician to stop giving the septra that he already had enough meds in his blood , I really feel the septra would help to prevent an infection from coming back. On Tuesday we have a follow up app. with the Dr. again and I will talk to him about having some blood work done in 2 weeks to check his WBC count and the CRP checked to see if inflammation is back up.

    He also wants to have my son's urine cultured by catheterization which has never been done in that way, has your son had his urine checked in this way and if so is it painful? I know he had a VCUG which they had to catheterize him so you probably know more then I do. Also the on call DR. pulled my son's foreskin all the way back which I was totally against but before I could stop him he already done the deed. My son's Pedi Dr. said that was wrong and it should of been left alone as to the 3rd Pedi dr. said as well.

    Also what bacteria did your son's urine culture come back positve for? My son's first UTi came back pos. for E-coli then just this last hospital stay it came back pos. for Enterococcus? I know they are both from the intest. but I was wondering why the 2 different bacteria found? I thank you so much for your time I am here for you and your baby boy I will be praying for the both of us and our little boys. I always tease and say I got a lemon baby and that I will just have to make lemonade outta him. ;0)

    thank you for your information its very comforting having another mommy to exchange information and views with this is so hard to defeat alone. Love n prayers Elizabeth

    Last edited by moderator2; 12-13-2009 at 02:50 PM. Reason: please do not quote, copy or reply to posting rules violations

     
    Old 12-16-2009, 08:14 AM   #14
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    Re: 3 month old has had 3 uti's and two bouts of septicemia - Please help!

    Yes, my son has had about seven to eight catherizations done. He's so used to them now he doesn't even flinch. I too had asked about getting blood work done on a regular basis and they wont do that. They won't even check his urine on a regular basis because they said that a bag collection is not very accurate and having more catheterizations can open him up to more infections. So I guess, it's up to me to notice if anything is wrong. It puts alot of pressure on us as the parents and I'm always on edge as you said.

    They pulled my son's foreskin back as well without even asking me.. what could happen by them doing this??

    The bacteria that it came back for both times was Ecoli - same as you.

    I do feel extreme comfort knowing that I can talk about this with you as you are going through the EXACT same scenario. I didn't think I would ever find anyone else as I searched the web high and low and couldn't find any other cases. I guess it's very rare.

    Please keep me updated on your son's case, and please if you get a chance we could take this convo to email if you like. I'm glad this information is out there now so if someone else has a problem like this they will know they are not alone.

    I would also suggest talking to your doc and getting him back on prophylactics asap. My son is taking a low dose of Novo Trimel 2.5ml / day.
    It seems to be working, but there is no guarantee this can stop any infection as it is such a low dose.

    Prayers to you and your family, I know how tough this is.

    Last edited by moderator2; 12-16-2009 at 08:49 AM. Reason: please do not leave huge quotes in your message - try using the Quick Reply button instead of Quote Reply

     
    Old 12-16-2009, 12:50 PM   #15
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    Re: 3 month old has had 3 uti's and two bouts of septicemia - Please help!

    Hello again missang24
    ....I have made it a point to let the new Pedi doctor know that if he wants to do things his way only that I will switch doctors that there are hundreds out there and I expect my opinion and my concerns to be taken seriously. I will go back Dec 28 and I am going to tell the doctor that I want some blood work done and a urine culture regardless of what the in office urine test strip says. The last Pedi doc we had was pretty good she would test when ever I called the office and she did have my sons CBC checked but thats what is so wierd that my son had his white blood cell checked and his white blood cells came back within normal range also his urine only had a trace of blood and white blood cells show up but 8 hrs later he ran a high fever and got very ill all within 8 hours ..I cannt put my finger on it.

    Last edited by Administrator; 12-16-2009 at 03:37 PM.

     
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