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Wanting to hear from anyone who has a child with kidney reflux that is involved in the Westmead Childrens hospital study on the use of antibiotics to treat it. I have just found out my second son has it, only grade two and am seeing specialist next week. If anyone else has a child with it that didn't use antibiotics until it was rectified I would also like to hear from you to know whether your child suffered more UTI's than when they were on AB's. Any info would be helpful.
Thanks linda
Linda I don't have a child with urinary reflux, but as a paediatric nurse I do look after a few of them.
I can't say if they have more UTIs with ABs or without, but I do know that most of them are on Bactrim to prevent any infection, and it seems to work pretty well.
Hope all goes well with your little one!
JandJ: I havent had my son as yet, but during my 18 week scan and follow up scan, it showed slight dialted kidneys, and im told that my baby most likly will have reflux and needs to be started on treatment right after birth.. i hope you dont mind me asking, but was your sons kidneys dialted when you were pregnant and picked up on a scan?
Will the reflux ever go away, or is it something they will have to deal with throughout life??
Sorry for all the questions, no-one i know has a child with this issue..
Any other information would be great.. Thanks..
mizzsocial: I was never told anything was wrong with his kidneys in any of the ultrasounds I had. After he was born he was admitted to hospital with a high fever and generally unwell. They never got a clean catch urine while he was in hospital but did lots of tests and couldn't find what was wrong. He was on iv AB's while there and got better quickly. We were sent home with no answers. He was a very poor sleeper and was irritable all the time. I just thought he was a 'naughty baby'! After about 4 months I got PND and some friends told me to take him to the doctor after they heard him screaming one day. The doc did urine tests and discovered UTI. Had ultrasound and xray with catheter and that was how they found the reflux. I know that there is 5 grades of it 5 is the worst and needs surgery. Grade two I am told has 80% of kids with it growing out of it by 2 years of age. So hopefully if your little one has it it will only be a low grade type. I will keep you informed after we see the specialist. Feel free to email me if you want to know anything else. Hope this helps. ;)
Jillian: Are the AB'S given orally, or through a needle?? someone on anther site told me that all babies with reflux need to be treated through AB's and the only way to do it is through a needle that they must have every night??
Jandj: Thanks for your reply.. helps to know there are others out there who have been through it and everything has turned out ok..
Thanks for more replies. Jillian I was not clear on your email if your son grew out of the reflux. You said he didn't have anymore infections, but does he no longer have it? Mizzsocial there is some really good info on the internet about reflux if you want the facts, not peoples horror stories like the needles for AB's, you poor thing. People tell you awful things sometimes. It is enough of a worry to know that your child has something wrong you dont need to hear untruths to sacre you as well. Please keep us posted of baby's progress as he is born. I am going to see the paed today for Jesse. Will let you all know how things got tonight if i get time!! :lol:
Yes ill keep you informed..:
How old is your son? Make sure you update on what he paed says today..
Thanks for posting this!!!! I was so scared of my poor baby having to go through needle injections everyday!!!:
Hi have been to the paed today. He gave us some good statistics. Jesse is 7 months old. He told us that 85% of kids with grade 2 reflux grow out of it. He said there is only a 25% chance that he will have any kidney scarring. Jesse is going to have another test done in August which will show if he has any damage to his kidneys. The paed said that ultrasounds were unreliable in detecting scarring as inflammation and scarring look the same on ultrasound. He said that the scan he needs is called a DSMA. It basically tells if there is any damage to the kidneys and if any part of them is not working. The paed said that this should be done about 6 months after an infection has occurred as the kidneys can remian inflamed for up to 5 months after an infection.
Some good news for mizzsocial, Jesse's left kidney is enlarged, on the 90th percentile for his age, but the doctor said that some kids just have big kidneys or one bigger than the other. he also said that ultrasounds are not always accurate as the baby moving or not scanning from the correct angle can give an incorrect size. Hopefully this might be the case for you baby [-o<
The other interesting thing he told me was that this condition is inherited, which means that either myself or DH has had reflux in the past. Because of this my other son Jack also needs to be tested. Hopefully he doesn't have it. Well I think that is about everything. Hope some of the info is helpful. Keep us posted on any progress with your kids. ;)
Thanks so much for that information.. keep me updated on Jesse please.. :)
Yes i just read that it was passed through the family.. and turns out, my OPA (Granndfather) always had 1 kidney bigger than the other, it never caused him any problems throughout his life though.. .. so i guess its something through my side..
Alexander's kidney problem showed up when he was still in the womb at 36 wks.
He has just been for his 12 month ultrasound a few weeks ago and it shows slight dialation of the kidney still. DH has put the report somewhere safe but when i find it I'll post what it says. They say he might grow out of it but it also could just be the way his kidneys are.
He has had no UTI's and was on antibiotics until he was 6 months old and we have had no toruble at all.
Hope everything goes well with Jesse.
Jillian said:
]Just reading what you posted about testing your kids wee. I asked the paed about doing the same thing so that I wouldn't have to take him to the doc everytime I think he has an infection. He told me that the test strips that hospitals and doctors use are actually not accurate in kids under two years of age and that the urine actually should be sent to the lab to be tested. He said that they can still actually have an infection even if the strip shows nothing. I hope that this info helps you and anyone else. I would hate for someone to not think their child had an infection and it went untreated. I was quite annoyed when he told me this as the hospital uses them all the time :fuming::
but we do keep a close eye and as soon as either of them get a fever the first thing we do is test their wee. If it is shows blood or protein we go straight to the doctors (it never has so far)
He gave me a heap of pathology forms to take a sample in for lab testing if I think Jesse has a UTI. It is amazing the things you find out when you delve deeper. Doctors dont know it all!! ](*,)
I was always told that if Alex got a UTI a urine sample was to be sent to the lab for testing and he was not to be treated until they knew what kind of UTI he had.
My little girl Tiahna is now 2 1/2 & was told she had kidney reflux when she was 3 mths old... She has grade 3 to 4 reflux & is on bactrim 5mls a night... She has had all the tests done & is now looking at having surgery within the next month... I cannot praise westmead chds hospital enough as they are so good with the kids & really know what they are doing... Tiahna's uroligist Dr Farnsworth is extremely well known surgeon who told us that Tiahna's reflux is not correcting itself & she has also had a couple of uti's hence why she should have the surgery... Tiahna has also been on keflex which is also a well known antibiotic for kidney reflux... The reflux is very scary & daunting at first but most chd do grow out of it & even if they don't the surgey has a 99% success rate & is a very straight forward procedure.. We also test Tiahna,'s urine atleast once a mnth just to be on the safe side... By the way my name is Kelly & i am a new member on this furum so a big hi to you all!!!
My DS was diagnosed with dilated kidneys at my 32 week ultrasound. He has had numerous scans, ultrasounds and dye tests that show it is caused by urine reflux. He is on Bactrim anti-biotics daily as a preventative for urine infections. When he was 12 mths he had moderate dilation in one kidney and mild in the other. He recently had his 18 mth ultrasound and that showed almost normal kidneys and and no kidney scaring. He has never had a UTI and I was so relieved with the results. His penis does tend to get a red tip at times, which we use an anti fungal cream for. The specialist recommend he stay on Bactrim until he is toilet trained and looks set to outgrow it.
I am now pregnant again and worry that my next child might not be so lucky. I will be having an ultrasound again at 32 weeks to check. There does seem to be some link to this and large boy babies. This fits in my situation as he was nearly 10 pounds at birth. Does this fit with anyone else?
Hi. We are moving to Sydney next month and my DS has kidney reflex although never had a UTI and his latest scans showed normal kidneys. My specialist referred him to Westmead Childrens hospital for further monitoring, and I am glad to heaar Kelly that you have received excellent treatment there and that they use Bactrim as a preventative as this is what he is on.
Kelly - how are Tiahna's kidney's now?
Tiahna's kidneys are fine. She has no scarring or kidney damage which is good news... We are still waiting for a surgery date as alot of babies have had kidney failure so they had to push them through before Tiahna which is understandable... We find bactrim really good except it has suppressed Tiahna's appetite alittle... We have also tried keflex as well but find bactrim more effective... Hope your little one is ok & that you find Westmead as helpful & supportive as we have...:
Hi all, my baby girl went into hospital it a UTI (6 months old), the paed did tests and it came back saying she had grade 4 reflux to her left kidney. He wants to wait 6 months and then we re test, if it is still a grade 4 then he wants to operate to fix the tube.... In the meantime she is on a antibiotic 2,5ml daily... Should the reflux improve to a grade 3, 2 or 1 then she will stay on antibiotics for the rest of her life or until it completely goes away. The antibiotic is just enough to keep the kidney safe according to the paed. But now we face new battles, she is extremely constipated. We gave her a glycine suppository for three days and 5 ml dufolac. All went well but when we made the Dufolac less her stools went hard again...... Is this part of the reflux problem or the antibiotic's??? She will be 8 months on the 21. Does any one else have this problem with the reflux???:D