Catagory 3 kidney refux. Any MN with experience of this?

[Haribosmum]

My 5m old ds2 had dye test yesterday to find out why his left kidney is still dilated after birth (this was discovered in a scan when I was pregnant). Turns out BOTH kidneys are refluxing and the doc suggested that it looked like catagory 3. Anyone any experience with this? Just want to know outcomes, any problems, happy stories etc...

BUMP!!

I'll just try one more bump for the afternoon MNers!

I have had reflux but no idea what category sorry, or what they mean. Poor him

they can do a procedure called a sub-trigonal injection to try and bulk the valve

Thanks for your replies.

The catagories basically go from 1 to 5 with 1 being the mildest and 5 the worst so his is pretty medium. From what I've looked at on T'Internet over the past couple of days it's quite mild and most 'grow out' of it by 5 years of age.

MJIM - I'm supprised you don't know when your next ultrasound is for your DS if his pelvises are still dilated? Is he on antibiotcs? My DS has been on them since birth duw to the risk of UTI with reflux. My son is happy and healthy as well. You wouldn't know anything was wrong by looking at him, it certainly causes him not problems. Not trying to scare you just might be an idea to talk to the consultant that scanned him after birth and see what the game is. I heard they were really over-cautious about this kind of thing due to the risk of kidney damage if they get a UTI. I don't think they'd do a dye test if it was only very mild dilation ( beleive me it's not pleasant watching a tube being stick down your babies willy!) but still......

Anyway I'll try to remember to keep you updated. I've managed to blag a consultant appointment withing the next couple of weeks (I must be VERY important LOL).

My sons have had this. DS3 went up to London to have the op to correct it. It wasn;t judged in categories though so can't comment on that. but bad enough for an op. The others cleared theirs by themselves which they do in 9 out of twn cases.

There is a poster here ..rattleskuttle..her 7 month old son has just had the op so she could help you lots. My ds's op was 9 6 years ago now.

Any questions i am sure me and her could answer.

Happy story... kidney reflux causing persistant UTI's which were not picked up and caused permanent renal scarring, threats of kidney being removed but eventually treated with long term antibiotics (2 years) and no serious problems since. That was 35 yrs ago and I'm a happy healthy 42 yr old now . Though my kidney does still look like the dog's chewed it and spat it out but it functions OK.

My 3 sons have had it. DS1 we didn't know about, he wasn't on trimethoprim for it so his kidneys are now scarred and may casue him probs in later life

DS2 had the op just before his 2nd birthday.(he is 9 now) All went fine, he had a kidney infection about 4 months ago out of the blue..so watching him incase of a blockage.

DS3 had it, was on trimethoprim, his corrected itself by the age of 3.

DS2 and 3 were found at the 20 weeks scan too.

Idobeleive... I have quite severe scarring on one side - never caused me a problem. As he grows the healthy part of his kidney will grow and the damaged part won't. So it won;t look pretty (a bit like someone put elastic bands aorund it then let it grow) but it will probably function quite normally. My scarring was bad enough that I remained under paediatric care until I was 16 but really it didn't cause much of a problem post about 11 (with 6-8yrs being the worst).

That is good news kew..am glad to hear you are working well . Fingers crossed for DS1.

It is hereditory, has other members of your family been scanned for it at all?

DS was adopted and don;t think he can "catch" it from me

Yes we were told at the time that it was due to a congential abnormality in teh ureters which was often hereditary or had some genetic componant. Both parents denied flatly any kidney problems on either side of the family... then it was discovered that my 80 yr old grandfather was missing a kidney, born without but no-one had noticed!

Well actually my sil boy who is a month older than my ds2 has it as well. The first two in the family EVER!

Yes my boys were the first 2 in the family aswell. but lots of stories from other relatives (in England) who may have had it but never proved becasue many moons ago. They had UTI's all the time. My sister has had many,and is due for a scan if she gets another kidney infection (she had never had a UTI-just kidney infections)

DP's cousins baby has now been born with it. So it seems it might be in both our families.

i guess these things can actually just start though.....like twins has in my family. I have had 2 sets..no other twins in the family at all!

unless you have persistent infections - no-one would have picked it up in the past. they didn;t have ultrasound when I was a gel and had variously horrible xray techniques instead so didn;t use them unless it was prety serious.

Standard treatment then for persistent infection and scarring was removal of the kidney apparantly treating me with long term AB's (Septrin at the time - now known to cause some nasty side effects and so banned ) was a radical new idea in 1972. I am a medical marvel

Kewcumber you have an almost identical medical story to me.
I too was on long term Septrin for my reflux and also had the horrid xrays. Iam 39.
I also have a duplex kidney with double ureter(sp) DO you have this?
Was wondring if anyone knows how early you'd notice this in a scan?
In edinburgh we only get a 12 week dating scan. Would it show up this early.
Basically hope my DS doesn't have.
I did get a scan at 36 weeks for DD as placenta was on low side, I take it if she had reflux it would of shown then.

My eldest boys wasn't found at his scans. (20 weeks and 32 weeks)

DS2 was found at 20 weeks scan so monthly scans after that.

DS3 was all clear at 20 weeks, but discovered at around 36 weeks as they kept monitoring every month as it can crop up at any time.

All my others were them monitored monthly (but twins would be anyway) and all clear. They then had 6 week scan after they were born-just to double check.

A dating scan i think would be a litttle early to find it.

I will look up DS2's notes as regards to mm. when back from town.

DS's kidneys were 10mm dilated at the last scan but that was in January. He should be due for another scan soon I think...

my granddaughter is having op next tuesday, she is two and found to have duplex kidney they said at twenty eight week scan .after regular scans inc radium dye then xray which i found hard they are going to stop the bad one functioning so good one will be fine the hospitals have been brill

my granddaughter is having op next tuesday, she is two and found to have duplex kidney they said at twenty eight week scan .after regular scans inc radium dye then xray which i found hard they are going to stop the bad one functioning so good one will be fine the hospitals have been brill

just seen this

hello idobelieveinfairies

my ds, 9 months, has had a pyeloplasty about 2 months ago. our consultant did not discuss in terms of category, but i know it was very badly dilated on right side.

happy story is that it seems to be a good outcome so far. apart from one small blip when we were back in hospital for the day about a week later (he had a high temp. but it was just some random bug)

the operation took about two hours and went v well. ds will have another scan soon to check progress and will have to stay on trimethoprim for a while.

i agree that many people must have had this problem undiagnosed in the past and that scans are causing more worry, but i'd still rather know. my dh spent most of his first few months in hospital with a kidney infection, so we're gusessing that he may have had a similar sort of problem, but not scanned in those days!

"gusessing"? guessing, i mean,lol

my grandaughter had kidney op yesrterday and will b going for her at eight oclock she has one fully functioning kidney hopefully now will find results in three months. st james hospital in leeds are bloody fantastic i could kiss them