UTI…

[Anonymous]

Anne Marie – Brian’s nutritionist recommend Primadophiles (Probiotic) for him, but it has rice starch in it, and he is sensitive to rice, then nutritionist recommend Rinodophiles, but I have not have time to buy it (I wonder if it has rich starch in it too). Which probiotic do you recommend?

There is no other effect of having urinary reflux, I do not think he is aware of it at all. Brian has not have any UTI again after he was on antibiotic, at first Urologist wanted to increase the dose after he turns one, but since he hasn’t have any infection, I requested to keep him on same dose, Urologist agrees. If you have any other questions, please ask.

[Anonymous]

Thank you all. Well, it sucks, because i just called the hospital and they said that they have never provided sedation so they will not give him anything. 🙁

And they are the radiologists doing the test and not a ped nurse and there is no way to change that. One thing is for sure. If the baby is suffering and they cannot get it in, then i am going to leave until someone else does it. I am pissed though.

[Anonymous]

Thais, I’m so sorry to hear that! I’d be mad too. I’m with you- sometimes I feel like Hailey gets treated inhumanely because it’s not their child. I also plan to take Hailey on Friday, but plan to leave if they can’t do the test for her.

[Anonymous]

Thais – ped radiologist is the one does the test, ped nurse should be the one put the catheter in.

[Anonymous]

Thais – I still owe you a response from long ago re: the whole NG tube thing – I did write a long post but my computer froze and I lost it . Will follow up on that on the other thread.

In any case, Andrew also had a UTI as an infant, and they immediately did a kidney ultrasound as the first step. He was in-patient at the time at our local hospital (he had been admitted as we were in one of those complete bottle refusals, and a routine urine test turned up the uti) so the ultrasound was done by a peds radiologist, and as others have said it is completely painless and non-invasive. In Andrew’s case, the ultrasound showed left sided hydronephrosis (basically – enlarged kidney) and megaureter (enlarged ureter – the tube that carries urine from the kidney to the bladder.) This can be caused by kidney reflux or in mild forms it can simply be an anomoly, but the long-term risks of kidney reflux are so great they will always due the vcug, which we did a few weeks later at Children’s here in Boston. It wasn’t fun for anyone, especially the parents (and we’d already been thru heart surgery!), but it was really quick and we had an immediate answer – no reflux, thank goodness. Also – no sedation, and I think Andrew was about 6 months old at the time…He was on low dose antibiotics as a precaution until he was 2 or 3 I think, and had ultrasounds and urine tests every few months until the enlargement was gone. With Andrew, this was probably just a benign anamoly that we never would have known about (and didn’t really need to know about) had we not done the ultrasound. Believe me, I know how much you don’t want to put Matthew thru yet another procedure, especially since in all likelihood everything will be fine (as it was in our case.) But as Andrew’s radiologist and urologist stressed to us, the life-threatening risks from kidney damage are too great to take any chances. A damaged kidney can’t be fixed – and untreated kidney problems now can lead to complete kidney failure decades from now, so the docs are super conservative with this.

Now – I don’t know how true this is, but we were told that kidney issues can effect appetite (Andrew was ftt at the time.) Also, I do remember that when he had his urine tests, we were told the same thing as you were re: the type of bacteria that is “ok” vs. problematic. This is especially true in boys who are not circumcised, since the sample can be a little contaminated (they don’t use catheters for the tests to reduce the risk of introducing bacteria – in fact, the general assumption is that Andrew’s uti was probably caused by being catheterized during his heart surgery.)

What hospital will you be using? If they have a large pediatric department and the tests will be done by a pediatric radiologist/urologist/nurses who work exclusively with kids, I’d be OK with that. You just don’t want some general radiologist/nurses who work with the general population and see a couple of kids a week.

OK, I’ve gone on long enough now – if you have any questions let me know – I promise to answer this time!

tbombara2006-4-25 22:45:47

[Anonymous]

Thais,

If I were you I’d try calling your baby’s pediatrician and have him/her make the request for you to have a pediatric nurse insert the catheter. That’s what my children’s doctor did for me the first time Liza had her test. For the next two, they knew me, so when I called they got the nurse for me. Don’t be afraid to make noise. It’s the parents who speak up and demand the best for their children who get the best care for their children. Not that doctors and nurses don’t generally care, but I’ve noticed that the more questions I ask and the more I insist on having things done a certain way, the better my children are treated.

That being said, like Tricia mentioned, if this is a big hospital where they do lots of pediatric cases they probably have enough experience to do a quick and painless catheterization. (You can call and ask how many pediatric cases do they do). You’ll be there in the room, I assume. If they don’t get it in the first time, pick him up and demand a more experienced person, and if they refuse, take him and leave. An experienced person will be able to put the catheter in quickly (it only takes a few seconds) and painlessly and he will be fine even without the sedation. Now that I am remembering more about Liza’s test I remember that I didn’t have the conscious sedation until she had her third test at 18 months, because I knew she’d be scared and wouldn’t stay still. She was not sedated at her second test done when she was 8 months and she did fine. She cried just a little, more because she didn’t want to lay still than anything else. I talked to her and distracted her with toys and a bottle. It really wasn’t that bad at that age, but at 18 months she was much more aware of things and much more scared so the sedation was more important.

I hope it all goes well and I’m sorry if I made it worse for you by scaring you about it all. I just wanted to be helpful and make it a less traumatic event for you both. I hope that your doctor can make the arrangements for you for a ped nurse, but if not, that these people are very experienced with babies. Good luck and please let us know how it goes.

[Anonymous]

Hi there. Sorry to hear about your little one.

Emma had her first kidney infection at about 7 mos. Late one night, she spiked a fever over 104, we took her to the ER & after all the testing, they dx her w/ a kidney infection. I had NEVER heard of a baby having a UTI. I asked the docs how she could have one. They told me right there that it was NOT normal & would for sure need to be investigated further. Let me back track…at my Level II sonogram @ 20 weeks, they saw one of her kidneys was enlarged. A subsequent in-office (new OB, we moved) sono found no enlargement.

Once Emma’s UTI was treated for a week (this is a long year & 1/2 ago…memory fading!), she was sent for a sonogram. That showed hydronephrosis (enlarged kidney). This prompted the ped to give us a referral to a urologist who then did a VCUG. This entire time Emma was on antibiotics. Emma’s VCUG was “normal.” So, it was thought her kidney just needed time to ‘shrink’ & be normal-sized. She went on to have another UTI, & we were told to just monitor things. In July, she had psuedomonas (MAJOR UTI), requiring a PICC line (twice) & antibiotic infusions. Following this, the urologist perfomred a PIC Cystogram (Emma was sedated for it–considered surgery & invasive, although they go up through the ureter, no incisions). Through this test, they found Emma had kidney reflux on BOTH kidneys, requiring a Deflux injection. I’ve included a link. The Deflux injection is 90% (maybe more?) effective. So far it appears this has been the ‘fix’ for Emma’s kidneys. Should she get another UTI or any other kidney problems, she would need a more invasive procedure (the next would be surgery w/ an incision).

Usually, a VCUG is performed following the Deflux to get a better picture of things. With Emma though, the urologist only ordered the sonogram (which showed kidney was not as enlarged). For whatever reason, she does not test accurately on the VCUG. Her urologist was surprised to see the degree of her reflux & that it was on both kidneys, since the VCUG was normal. Just an fyi.

Anytime a child under the age of 2 has a UTI, especially an infant who is not near potty-training age (when urinary retention and/or poor hygiene/wiping can lead to UTI’s), it MUST be examined further. Emma will be followed by her urologist for some years to come…with each UTI (especially if it hits the kidneys), comes a greater risk of damage to the kidneys. This is a MAJOR concern.

Hope you are able to find ease with the docs & the tests. Take care.

http://www.deflux.com/index2.asp?mid=7

[Anonymous]

Thank you all for your posts…. we chose our new ped because we were told he is really good at communication, so i sent him an email last night with my concerns (he is probably already thinking i am going to be a pain). But he responded within 10minutes!!! Excellent start, i think. He told me that they will not sedate Matthew and he is fine with that and he will be in a little pain but nothing more. He said that it should be a pediatric radiologist inserting the catheter. He said that the person should have experience with babies and to demand that that be the case. He suggested we call in advance to make sure and once we are there we confirm. If that is not the case, he would be happy to reschedule with someone experienced. So, i think we have his support to demand the right person, even though he will not make the call himself at this point.

Thanks for your support. Tests are Friday morning. I just hate grtting different advice. Oh well, i guess we will have answers on Friday about all this. (oh yes, and i also heard about kidney problems causing eating issues… who knows, but i guess at teh end of the day we need to investigate everything!).

[Anonymous]

Good for you!!! I’m so glad you talked to the Pediatrician and got his support and understanding for your concerns. I tried to post this morning again, but the site was having problems. I was going to tell you that everytime my children have had procedures done I have always called ahead and talked to the staff, and they have never treated me like I was a pain. Instead, I think they respected me for being an intelligent and concerned parent, and they have always been very compassionate and reassuring. So, yes, I agree with your pediatrician about calling in advance. Ask any questions you have and tell them your concerns. That’s what I always do, and it always gets me the best care for my children.

That’s good news about the pediatric radiologist. It should go very smoothly and like the pediatrician said it will only be minimally painful. Liza has very little pain tolerance, and she only seemed to experience some minor discomfort when they placed the catheter. The rest of the test is not bad, just filling the bladder (make sure you know how much he weighs – that’s how they determine the amt. of fluid to put in), and then x-rays with the bladder full. Then they remove the catheter and wait for him to void, and take some more pictures to see if there is reflux after voiding.

I hope it all goes well and I’m so happy that they have pediatric experience! That makes all the difference in the world.

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