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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
Oh worried mommy, I hope things get better so she doesn't need an op. They are so precious.
Which antibiotic is she on? We use Bactrim but only 1 ml daily and haven't had an issue with constipation. Although my son has only minor reflux he doesn't experience any constipation from that either.
Has your girl started on a new solid lately? Banana or something else introduced can cause constipation, but so can 2.5 mls of medication. If not already you can try natural laxative foods rather than more medication to fix it once the initial constipation is clear. If she is doing solids, maybe 2 fruits in natural juice mushed up or pureed apple etc can be introduced? If really good with solids small pieces of melon (ie watermelon, cantelope/rock melon, honeydew melon etc) can be given for her to chew on. To clear bad constipation sifted/softened/mashed prunes etc can be used - stir into rice cereal. Just a thought.
Let us know how she goes. Best wishes :hug:
Hi Mummy Chrissy,
She is on Ranbaxy - Ranceph, I have to mix a new bottle every week as the suspension lowers.
I have tried the prunes from the purity range here is South Africa but no luck with the constipation.... I try to avoid Banana's as i have read they do make constipation worse. I have also tried the prunes juices....
She is now on her 7th bottle of antibiotics, so that would mean she is now on her 7th week.. The problem seems to have started while on antibiotics... My heart breaks for her as she cries when trying to pass a stool.. They are not very dry, but they are hard... And almost as big as an egg some evenings...
She also drinks a lot of formula, At least 4 to 5 bottles 250 ml each, Plus she is eating rice cereal for breakfast - 5 scoops, a fruit purity for lunch and a veggie one for supper, She does not finish the dinner one..... She also has a water bottle one day and the next organic tea or juice.. The Paed says to have lots of water to help the kidney....
She also snacks on finger biscuits and she loves cheese curls....
She is not fat nor overweight, it is as if she is almost using up everything going in.
And she is not sleeping through, some nights she moans the whole night through.
We have tried everything, even co sleeping but not even that soothes her.
I must admit that other than the reflux and constipation she is a very happy little person but i am feeling useless as i know how we feel when we are all blocked up.
I am going to try your suggestions and i will let you know how it goes....
Thank for the advice, It is greatly appreciated......
:hug:
Hope you refluxin' moms are still out there. my 2 month old girl (Jordis) was hospitalized with a UTI a month ago. She is now 3 months old and has been infection free (as far as i know). Had the VCUG last week and showed stage 2 kidney reflux in both kidneys. i hate the idea of a year of antibiotics (although i realize that may be what we do). there are some studies that show that kids on the antibiotics had the same amount of infections as kids with no antibiotics. But considering my daughter is so young...could be too risky?
Going to see pediatric urologist next week. Has anyone NOT taken the antibiotics and seen what happened? If I don't do them, i plan on going in once a week to the ped with a pee sample. (She gave me some special bags to catch the pee). if it tests positive then they will cath her and test again. If positive, then she will have to go on antibiotic then. I don't want to be stupid, but i worry about the risks of taking an antibiotic for a year - even if it low dose. Would love some input.
Hi udt, I'm sorry Jordis is sick, the consequences of doing nothing are potentially serious as scarring of the kidneys is not worth the risk. Your little girl will be well able to deal with low dose antibiotics and depending on the degree of infection and the strength of her constitution it's likely the safest route. Alternatively, If your Dr. is happy for you to take the wait and see approach, and this sounds as if it's the case, then find a chinese herbalist who specialises in paediatrics straight away so Jordis can have a week of herbs in the interim thereby maximising her chance of clearing the infection between tests. Good luck and what you choose to do will be best.
Hello,
I thought i would tell you my story i was diognised with double reflux kidneys grade 5 when i was 2 years old (im 36 now) by the time i had surgury both my kidneys had been scared my left kidney was the worst. I have had many checkups every year and have only had a few infections i also test at home. iv'e also gone on to have 3 beautiful girls who have all been tested but are all fine. The only time i have been really affected was after having my second daughter by cesar as infection was introduced into my body was on iv antibiotics then stayed on them orally for 6 months. Ive also made a connection of getting minor infections when i get my period the doctors cant make a connection but now im on depo to stop my period i have no infections. I make sure i eat healthy food excersize and dont drink alcohol. I just wanted to let you know that as awful as it can be with a little bit of precaution they will grow up happy and healthy. I wish you all well with your journeys ahead.
Hello , is anyone still out there? We have just come back from hospital with DS who is 8 weeks today. He had a UTI and they've done an ultrasound which shows some kidney dilation. We are having the next test (where they put the dye in the bladder) in six weeks. He will be on bactrim as of next week, when he is off the current lot. I am really upset today as I've found I have to have my other DD tested, and then Im thinking my other DD may need it as well (she is 10). It's all alot to take in.
I've also had a very holistic approach to their upbringing, so the idea of antibiotics is not nice, but I know I will do what I have to.
Ajm mum, Im glad to hear your story.
I just wanted to connect with some people in the same situation, Im feeling a bit depressed at the moment.xo
Hi
My son had a UTI 7 weeks ago that required hospitalisation. (Temp 40). The infection was in his kidney. Ultrasound revealed mildly dilated renal pelvis and dilated ureter on the left side. Right side normal. Discharged after 4 days on keflex for one week (max dose) then bactrim 2ml nocte.
He went in to have DMSA yesterday and was meant to have nuclear medicine cystogram as well as xray cystogram. I wasn't comfortable having two cystograms so didn't have them done until I'd spoken to consultant (registrar had written imaging requests). Consultant called me to say that yes there should only be one cystogram. He is going to review DMSA results and then let me know whether it should be an xray cystogram or nuclear med cystogram.
It isn't pleasant having an ill child but to have an ill child and then find out as a result of the illness that there might be something physically wrong that requires monitoring/ intervention just makes it that bit harder. Especially as there are invasive tests required.
I researched paed journals of urology, urology text books, etc etc and couldn't find anything that might suggest these tests are not necessary. So I am more than willing to have a cystogram performed once I hear from the consultant which one to have (paed consultant)
Anyway I am here if anyone else is going through same thing at moment and would like to talk to someone who understands.
Ciao
Tucs
Hi Tucs
Sorry to hear your son having a dilated kidney. I exactly know how you felt to find out something may be wrong that needs monitoring. We had a shock ourselves when my daughter was diagnosed at 7 weeks, even though I have a duplicated collecting system. I suppose that I was thinking of myself and the fact that my duplicated system didn't bother me at all apart from having had a few UTIs.
I hope it all goes well with your son.
Teresa
Blog on my daughter's experience with kidney reflux and surgery: Kidney reflux, ureteral reimplantation surgery and bladder spasms
Support group: ureteral_reimplantation : Kidney reflux & ureteral reimplantation
Hi Tucs,
We have our MCU (i think that's the test) on monday, so I'll know more after that I hope. It's not fun is it. I dont like the waiting but Im scared of knowing too. Hoping all is ok and manageable.
Hope all is well with you, guess we'll both know more soon xo
PS Is your DS Jaspar? Mine is Jasper!
Theresa, what is a duplicated collective system?
It turns out DS has no reflux at all, but now Im concerned as to why he has dilated kidneys. The report from teh u/s (which was done 10 weeks ago) said mild, but my paed couldn't work out what the prob is as it was not the tube that was dilated, but actually a part of the kidney (the finger pars if that makes any sense). I can't get any answers...
hi im new to the site but i had my 20 week scan about a week ago and have been to my doc and he says that my baby could have kidney reflux ... has anyone else had a scan and they have said that there is a "prominent renal pelvis" and it did turn out to be kidney reflux???
i was told that i will have to have another ultra sound later on to find out
Hi kristel & welcome to BB!! This thread is a bit old, but hopefully some mums on here with experience can come & help.
My DD1 is 6. At 4yrs 11 months we found out she had kidney irregularities and after 8 months of scans and a cystoscope found out she has a duplex system (two ureters on her left kidney that both connect to her bladder) and her left kidney had partially divided itself into two. That kidney is also dilated and nearly doubled in size in comparison to the right one. She's had 3 general anaesthetics, her last one being just over a week ago on Monday. They have fixed the reflux in both ureters on her left side, and on her right hopefully this last surgery will have fixed. You can check out our thread in this forum called "Meeting Matilda... Meeting Autism", as she already has autism as well as renal issues.
We only found out late, so its different to finding out in utero. Matilda has renal scaring due to infections and living with it for as long as she did before we picked it up. That has caused us a lot of stress and worry over the past year.
A prominent renal pelvis means that it is "sticking out" or slightly dilated. Hopefully with the second ultrasound they can have more answers for you. :hug: it is stressful enough being pregnant without extra worries.
thanks for that :) i have been worried and now thinking could my daughter have it shes 3. what was your daughters symtoms???
She didn't have many symptoms. She had gastro oesophageal reflux as a newborn until around 6 months, she had her first "known" urinary tract infection at 5yrs old. Then she had 8 in that year alone. The first scan showed that there were abnormalities and cause to investigate further. The specialist said that if DD2 had a UTI than we should have a scan straight away to check as duplex systems can be genetic.
I had this when i was younger, i hardly ate hardly drank as a baby and just was not a happy baby at all. I Had my operation when i was in grade one so about 5 or 6. I have also heard it can be genetic, I always make sure my babies are doing well and if there are any problems i keep on them till i get an answer. My DS1 was in hospital at the age of 1 and i made them check his kidney's to see if that is his problem but it wasnt !!!! I am pregnant with my forth baby now and one of the things i was always concerned about was falling pregnant so obviously there are no problems with that. Goodluck to you all and I hope all turns out well for all of you!!!!!
i have a son who has an reflux grade 3-4 on left kidney and end-up with scarring in his left kidney and has function 27%.i am very worry about this reflux and i don't know what to do.is any one knows a bout this damage and will go away in the future and the function will come back to normal if the reflux goes a way.please i need a specific answer
[just i wanna ask you when you had it .did you have an infection and affected your kidney like my son.if yes what a bout your kidneys function how was it?thanx
ohhhhhhhh,i cant stop thinking about my son.i am keeping stressing and thinking ,because my baby since when he born was every thing natural with him and even when he was befor born i had altra sound show all ok,but when he turn up 1 year old he got UTI with grade 3-4 and has scarring in his left kidney and this scar reduce kidney function to 27%.i need to know in the future will be possible his kidney comeback to normal function or no-and will stay on this27% of renal function.please i need help because some doctor says yes an other say no but may be since will come back to normal but not the function will stay 27 because the scar.so i don't know what to do
[sorri mecheal ask you again same Q.when you had UTI,what happened to your kidneys ?did you kidneys have been shrink and what happened to their function are they reduced to how much?so now your kidneys comeback to normal function like 50% left and wright 50% or how much now.i will appreciate if you explain every thing had happened with you because your case very important to know and take a advantage .thanx
thanks i think i will get my daughter tested then she has never been a big eater but she was born with a cleft in her soft palate so that slowed her down a bit hopefully its still just to do with that not something new :(