Hydronephrosis and duplex kidneys

[sethsmummy]

Hi ladies.. i just wanted to start a thread and see if anyone else is going through the same journey as me and wanted to go through it together.


some background

my little man is five months old. In utero they found that his kidney was slightly dilated but it wasnt enough that would ever cause problems. It was never checked again. he was born at 36+5 and no checks were done after he was born.

at 12 days old he stopped breathing and was rushed to hospital where he was intubated and transferred two hours away to yorkhill childrens hospital. he spent two weeks fighting for his life and a further week and a half recovering and coming off oxygen.

a couple weeks ago we went into hospital as his temperature kept dropping as low at 34.9 at night time. was told i was paranoid and nothing wrong with him so i just continued to wrap him up tight at night time.

the start of our kidney journey

on the 4th June after him being ill and having a high temp regardless of meds i took him to the gp in the morning. they said he was perfectly fine as no temp when we went. got to lunch time and his temp rocketed to 40.1.. took him straight back to the gp and were sent to accident and emergency. he was taken in and bloods done. once the results came back they said either a bad uti or meningitis so urine culture was done, thankfully came back as just a bad uti, then they found he also had a kidney infection. he was sent for an ultrasound of his kidneys. i was told he had a cyst in his ureter and hed need surgery. we were reffered to yorkhill.

So went on Wednesday. The urologist drew us a diagram and he infact has a duplex kidney on the right side each with their own ureter. One of the kidneys and its ureter looks damaged as it is seriously dilated adn baggy. he also has the cyst in his Bladder with which there is a risk that it may move and block the urethra. So he is going back in on the 3rd July for a better ultrasound.. between now and then he should be in for a camera to be put up through his willy to see the extent of the cyst and any damage caused by the bad infection.

in July or the first week of August he wll go back for a cystoblast where they will insert a needle and put lots of holes in the cyst. he said this has a 90% success rate. if that doesnt work and he still gets infections then he will have to go back and have the 'bad' part of the kidney removed and the ureter.

he was on a 5ml a day dose of Trimethoprim but thats now lowered to 2.5ml at bedtime.

 

[bathbabe]

My sister has a duplex kidney. She has a ton of kidney problems but they havnt been caused by the duplex kidney (she caught a nasty strain of e-coli when she was very young and spent a week on life support, 11years later she still doesnt have fully functioning kidneys)
So really I have no idea because if it wasnt for the fact she has scans and full checks 3times a year they wouldnt have picked up on it anyway!
I just wanted to let you know that there is support out there for things like this, and your not alone. Maybe your consultant will be able to point you in the right direction xx xx

 

[sethsmummy]

Thanks Hun. I have met a few people and am part of a few support groups for people with children in this position. I don't see our normal consultant for a couple weeks now. Not sure if the urology consultant would know as we live three hours from the hospital (well two if there wasn't heavy traffic) xx

 

[ClairAye]

I spoke to you on your other thread and although our situations are different there are similarities. You can message me any time you need if you like (I'm also in Hydronephrosis groups on Facebook!) tomorrow marks 3 years since my son was admitted with urosepsis and the start of our journey, I never thought we'd get here. It's not always easy but us mums are stronger than we think!

 

[sethsmummy]

Thanks Hun! We're back in hospital again. Urine is clear thankfully they think it's his throat this time. Xx

 

[BrandiCanucks]

I'm sorry you're going through this. My son's duplex kidney was discovered by accident when he was hospitalized for circumcision complications, kidney and penile infections, when he was 7 months old.

Are they going to do a VCUG to confirm reflux? My son's isn't that severe but it's enough that he has to be followed closely by nephrology and urology in case his kidney stops functioning and needs to come out, and also to determine when is best to fix his circ complication that lead to all the kidney damage (not related to the duplex).

I hope you're able to get answers and treatment, and that all turns out okay.

 

[sethsmummy]

I'm not sure Hun. We only know he's getting a camera up soon and then after it all the kidney function test

I hope your little one is ok.

We're still stuck in hospital. That's 32 days he's spent in hospital in total in his 6 months. Not allowed home until he starts drinking properly xx

 

[amelia26]

My son had urology problems affecting his kidneys, although different to your little boy's.

He had a type of urethral obstruction (a syringocele) which caused reflux up to the kidneys. It was picked up at 2 weeks when he became very ill with a uti.
We spent a lot of time at Great Ormond Street in his first for months and I know how miserable and frustrating it is being stuck in hospital. He had six operatiions between the age of 4 weeks and 6 months. His kidneys returned to normal and he was left with no laying damage. His bladder was damaged but he's 3 now and we are making slow progress with potty training. He's still on low dose antibiotics to prevent utis.

Wishing you the best of luck with your son.

 

[BrandiCanucks]

A VCUG is a special kind of xray where they use a catheter to drip a dye into his bladder until he pees, and then they watch the dye on an xray screen to see if it refluxes into his kidneys.

Your poor little guy. I feel so bad for him.

 

[amelia26]

My son had a vcug when he was a few weeks old, which diagnosed reflux. He had another test in the nuclear medicine dept which involved injected an isotope and scanning him to see it pass through. I can't remember what that was called though.

 

[ClairAye]

My son had a vcug when he was a few weeks old, which diagnosed reflux. He had another test in the nuclear medicine dept which involved injected an isotope and scanning him to see it pass through. I can't remember what that was called though.

Jason had the nuclear one, the MAG 3.

 

[amelia26]

Yes, that was it - the mag3.

 

[sethsmummy]

Thank you all.

Hmm well I wonder if the camera one Is that?! The function one he will get they will put dye in and scan him/X-ray as it passes through. Xx

 

[ClairAye]

The camera one is a cystoscopy, my wee boy had it when he got his PUV (urethral blockage) treatment, he also has one potentially at the end of the year to look at his bladder so it could be looking at that or for blockages? I'm really not sure though! There is also the VCUG which uses dye and it's basically a real-time x-ray, they did it with Jason and played the images back to me, explaining their findings. All of the different scans can get really confusing! I hope your wee boy is doing a bit better now

 

[sethsmummy]

Oh wow I'm confused I've got it written that his operation is called a cystoscopy.

The camera thing is called an mcug ( just looked on my diagram) and then the dmsa to check function.

Are you gus UK or USA? I wonder if they call them different things.

 

[sethsmummy]

Aha. Must be

Wikipedia: vcug

A VCUG is a fluoroscopy procedure. This is an imaging technique that uses x-rays to create "real-time" or moving images of the body. It helps doctors see how an organ or body system functions. A radiologist (x-ray doctor) and radiologic technologist perform the procedures together.

Dmsa:

A DMSA scan is a radionuclide scan that uses dimercaptosuccinic acid (as a radioactive tracer) in assessing the renal morphology, structure (static scan) not a functional scan. It is now the most reliable test for the diagnosis of acute pyelonephritis.[1] The major clinical indications for this investigation are the detection and/or evaluation of a renal scar, the small or absent kidney (renal agenesis), an occult duplex system, certain renal masses, systemic hypertension or suspected vasculitis.[2]

 

[ClairAye]

I'm in Scotland, also! Yes, Jason's operation was the cystoscopy, a wee camera with a surgical blade attached inserted into the penis. I've not heard of an MCUG. I'm sure in one of my groups someone said that the DMSA and MAG 3 were pretty similar?

 

[amelia26]

A cystoscopy can be done just as a diagnostic test but they can also operate at the same time. My son had six cystoscopies and all but one involved surgery. The last one they expected to operate but on looking with the camera they saw it wasn't necessary. He had GA for all his cystocopies.

 

[sethsmummy]

ahh thanks you. yeah we have been told he will be put under a general. I am guessing he will be under for the other two tests too as ive been reading they take 45 mins and they need to be really still... so not happening wiht a 6 months old

I was told on this hospital admittion that his HYDRONEPHROSIS is grade 5 and also that the wall of his kidney is quite thin x

 

[ClairAye]

I've rarely heard of them being put under for the MAG 3, honestly. My LO was 3 months old when he had his, they pulled a tv screen down to he could see it to try keep him distracted, he also had toys too. It completely depends though! Are his tests happening soon?