My DS has probably got kidney reflux, just wondering if anyone else's kids have or have had this? He is 9 weeks, had a UTI at 7 weeks, further testing in 4 weeks. He's on bactrim at the moment. Thanks ox
You've read my mind as i was just getting on here to ask the same question, my son is 9 weeks and probably has the same thing. I have a history of kidney problems so he had an u/s at 6 days and then 6 weeks and things have got worse, so he's on bactrim as well and we're heading into Melbourne to have scans done next week. Depending on the results as to where we go from here. I'm not sure what the next step is if he does have it do you? Also are you worried having your bub on antibiotics? Are you taking anything like probiotics to help bub? Sorry for all the questions i'm just so happy to kow someone else is out there going through the exact same thing. Would love to keep in contact with you and share this journey. I'm trying not to freak out and just take it one step at a time.
Cheers
Hi Jen, sorry to hear you've got the same prob. Not fun is it!
I guess your next test will be the MCI (I think it's called that, forgive me if Im wrong. It's the one when they insert the catheter and see if there's refluxing in the kidney, via xray). That's our next step, followed by another test to see the extent of the kidney damage. At this point we have no idea. With kidney reflux it is graded from 1-5, 5 being worst. I think up to stage three they treat with ongoing antibiotics, (maybe nothing if stage one or two) and further on can be surgery but not always.
My GP has been good and explained that mostly they grow out of it (here's hoping).
I have to say the whole antibiotic thing is so not what I wanted. I know of course no one wants it, but we see a kenisiologist for the whole fam, so DDS was actually already on probiotics just because I have all my kids on them for good immunity. So antibiotics was really against the direction I was headed!! Anyway i give him probiotics once daily. They are called Lifestart the company is Natran i think. Maybe health food stores stock it, we got ours thru our kenisiologist.
I only know what the Doc's have said but let me know if you have anymore questions. Then after you have scans next week i'll prob have heaps for you. Good luck and hope it's all ok. It is good to have someone to go through it with, hope we both get good news!! xoxo
I am sorry to hear you little babies are having problems with kidney reflux, my DD has a horseshoe kidney and suffers from kidney reflux.
She was on Bactrim from birth and I weaned her at about 9 months of age as she still had no problems with infection and also as I did not like the thought of her being on these meds for so long, (the Dr had told me that it is recommended to be on the meds until 12 months however if there have been no problems with infections then you can stop as early as 6 months) my DD still has never had an infection. The lastest scan shows there is some scarring as a result of the reflux however we do not need to go back for another reflux/xray test (sorry DD has had so many tests I forget all of the names) until December so I am really happy.
Sorry I am not much help to you, but I thought I would pop in and say hello.
Thanks DD for that! I noticed you have a Matilda! So do I! And congrats on your pregnancy!!
Sorry to hear your DD has had probs, but great she's off the meds. I find it very hard to take thinking my bub will be on antibiotics for so long. Also it can run in siblings, so the thought my DD1 and 2 have it is scary as they've never had symptoms, but you dont necessarily need to.
DS seems to have a bit of gastro and Im finding it so hard not to panic, with the kidney reflux I feel like Im jumping and overreacting to everything, but how do we not? I dont want to keep him home if he needs medication but I do not want him to go on stronger ab's if it's a gastro thing and he doesnt really need. IFYKWIM. Doc said if he gets temp he goes on ab's regardless, as testing urine takes 24-48 hours and they wouldn't want to wait incase.....
Oh the joys...
it's alot to take in I think. Hang in there mums, you're doing a great job!! xo
My sister had it when she was very little. I was only 2 and a half, so don't remember what happened. There was some invasive test that I had to have, but Mum did it because it can run in families. I don't remember it.
Thanks heaps for the replys and really good to know that we're not alone in this. My son has had no syptoms at all, he was tested as i've had kidney problems in the past, mainly scarring on one side, and they are thinking this is genetic. I'm not good on the idea of having him on ab's for a year, but hopefully after these tests we'll know where we stand. He's a very happy baby, calm etc and no syptoms of anything wrong. Thanks again will keep you updated
It's weird because they can have no symptoms. My big fear (apart from DS) is that my DD's will have it and not have had symptoms. They will have to have ultrasounds if Ds's test shows kidney reflux....
SB good to hear everything is fine with you and your sister.
JJ, let us know how the tests go, good luck. xoxo
Good luck Jen, I hope it all goes well. We dont have our test until the 22nd, so trying not to think too much about it. Thing is I keep meeting people who have kids that have had kidney reflux. Half is good results half not so good, but not too bad either. Just want it to be over! How is your little man? xo
Hi,
Just wanted to let you know how ryder and i went with his tests. omg very horrible tests but the people were amazing with him and me. the mcu test (tube up his willy!)wasn't as bad as i first thought, it was quick and he only screamed a little. it was over and done with before i knew it, and came back normal no bladder reflux. The radiation test tested the kidneys and tubes for blockages etc. this test took 45min and was so horrible for me, they had to put an iv in and had trouble finding a vein in his hand and ended up putting it in his foot. it was the most unbearable 10mins as he was strapped to the bed and screaming like i've never heard before. i was crying and very distressed. but the good thing was he wore himself out and slept the rest of the time. i was dazed and very fragile for hours afterwards feeling like the worst mum for putting him though it even though i knew he had to have it done. results came back and he's in the normal range although on the higher side so it just means an ultrasound in 6 months and no more antibiotics.
how are you and your little one going?
hope i haven't scared you if you haven't been for your tests, every baby is different and each reacts differently good luck and please let me know how you go
great news Jen! Im so happy for you, I hope we get good results too. Did you have the nuclear scan the same day? Our MCU is on the 22nd june and then the nuclear scan is not until august... talk about dragging it out.
Why did you think DS had gotten worse at 6 weeks? Was it just from the u/s? Im hoping DS has gotten better, but I am a realist and know it most prob hasnt'. But I love to hear other success stories, gives me hope!
talk soon xo
Hi Jen,
We had our MCU last thursday and DS was a wonder. He didn't cry and was just lovely. CAme back no reflux at all. I am just a bit confused though as to why he wouldve had dilated kidneys in his original u/s. Anyway, am seeing paed tomorrow and we have nuclear scan in Aug. Do they usually sedate them for this test? I cant imagine a baby lying still for it. It sounded awful what you went through for it.. not looking forward to that one.
So Im not sure if I can be excited about no reflux or if it means there must be something else wrong...??
Glad to hear firstly that there's no relfux and secondly that he was great. The nuclear scan was a bit of a terrible one but as i said maybe your bubba will be great. They didn't sedate my son but they did strap him down to the table which wasn't nice, along with the doctor having to keep his foot completly still as this was where the iv was put in, he was very unhappy about having to stay still. Good thing was when they turned him over to do the rest of the test which is 30mins he was so exhausted from struggling and crying that he just went to sleep. DS had his head facing down so i just got the nurse to put some gauze under his forehead i was scared he was going to suffocate!!
My results came back normal so maybe that's just how his kidneys are, doesn't mean there IS something wrong.
Kidney Reflux
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am not looking forward to it but am trying to be brave for my bubba. any news on your little one?
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