Children's Health- Anyone familiar with PUV?

[TeAmo]

Is this part of the forum just about us?

Is there a place to find Moms with sick children?

 

[Rockell8788]

Im not sure there is Hun. My ds had a massive puj at birth almost died, and then again at 7months due to a severe infection that 4 docs failed to spot despite a septicaemia rash! just found out last month he has scarring from the infection and need even more tests now to see how bad it is. Hes also a tiny little thing he's 8.9kg and about 72cm and is 15months.
How severe is your ds puv?

 

[TeAmo]

Thanks for the reply hun! Bless your little boy. What tests had he got now? I can give you some advice if its similar to Cam's.

He was rushed to hospital when he was 7 weeks with suspected Meningitis, had lumbar puncture which was clear and was in hospital for 3 days with severe UTI. He then had routine tests following his UTI when they discovered a small left kidney and severe reflux on both sides.

It wasnt until November last year a test revealed his left kidney was no longer functioning. He was rushed in quite quickly this year after being referred from our local hospital to Southampton for an op. I didnt know until we got there that the doctors suspected PUV. I also didnt realise how serious the affects of it could be. Doctors went in to diagnose and found a stricture about a mm from the usual PUV site. He has had another op since to try to stretch the stricture out.

His remaining kidney is also not functioning as it should at the moment. He is under specialist care for it also. His next op for PUV in in July, and kidney clinic at the same time!

Cam is tiny, I have read that this is often the case. He is 72cm tall and weighs 19lbs at last hospital appointment (was about 17 months).

xx

 

[Rockell8788]

My jakey boy is under Southampton consultant care too. There where he was rushe from our local for his operation too. Did you stay on G4 ward? And have henrik steinbrecher do his ops, that man is my hero.
He's got to have mcug and another ultrasound.
He's already had a countless ultrasounds, a test where they put nuclear meds straight in his kidney through the cath he had in his side and had a mag3 done.
Thankfully Jakes functioning is 46/54 so his right has compensated for the damage. He's still got dilation but doing well. He's on trimethroprim every night as well.
Oh your poor little guy he obviously had its severe, do they know how his future prognosis looks? Did they not diagnose dilation during your pregnancy?

 

[TeAmo]

Wow, so lovely to meet someone so close to home. We are under Steinbrecher too. He did the most recent op, but Mr Griffin (urologist) did his first op and diagnosis. G4 is wonderful, for his check cystoscopy we were on day unit and I was not impressed with the care there. For the op in July I will request G4 again.

Sounds like he has already had a lot of the same tests as Cam. His function is almost even so thats a wonderful sign. Does he also have reflux?

Nope, nothing diagnosed on the scans! I have 6 of them also. I am contemplating asking for an investigation into my antenatal care. PUV is so rare, 1:8000 so I know it is not routinely checked for. This makes me wonder whether it was just after he was born? Steinbrecher says we may never discover.

I also want to know whether this can be genetic? I was told in hospital it is not, however the reading I have done since suggests that there has been a link between siblings. As we are TTC #2 this is a big concern!

So his prognosis is ok at the moment... so long as his remaining kidney sorts itself out. So at the moment his urea and creatinines are still not levelling out. I need to check also about any cycts on the kidney as I thought this was mentioned last time. Cam is also on Trimethroprim and takes it like a trooper. Dr Nagra (Nephro) is his consultant for this. She is brilliant. We will start with looking at diet, then medication and depending on how he goes, dialysis etc is a long way down the road. thank god.

xx

 

[Rockell8788]

We're not sure if he has reflux as well, his mcug in the next 4 months will hopefully tell us along with how much scarring he has. There was a query about cysts on jakes kidney at his one of his ultra sounds but thankfully was just part of his dilated renal pelvis.
His prognosis sounds great considering how severe his puv was/is.
Jake hated his trimethroprim for months until we found a different brand that doesn't taste like aniseed sambuca lol. He's been put on 1.8ml recently after we got specialist milk for dairy intolerance and under weight babies.
Will cam go on a low potassium ect diet soon then.
It really is nice to speak to someone else who's child has kidney problems seems so few about. Even more so that they are under the same hospital. Mr griifin was stienbrachers supporting surgeon during jakes op, such a small world. I loved g4 they was so good with us jake was rushed there at 3day old and I hadn't showered or have anything with me and they found everything I needed and was so kind to me. Jake to a shine to Becky a blonde nurse. He would only let her take his blood pressure all the others he would kick his leg so they couldn't do it. Funny enough he know has a major thing for blondes literally throws himself at them.

 

[TeAmo]

ahh, you will have to keep me updated on how his tests go!! Have they said him being small is anything to do with it? Seems too much of a coincidence...

Cam doesnt fuss over his medicine. He does get the aniseed one every now and then but I dont think he notices too much luckily!

To be honest, I am not sure what the diet will look like. I am guessing we will learn more when we see Dr Nagra in clinic during his next op in July. They have mentioned about taking out his non functioning kidney but all looks okay at the moment. It can cause dangerously high blood pressure but all has been well so far! FX.

What op did he have? Has he been circumcised? We were a bit gutted about it as nothing we have ever spoken about but when Mr Griffin said about how it reduces the risk by soooo much it was an easy decision to make.

I didnt think hospital would change Cam, everyone used to say he is so young he wont remember. This was when he was first rushed in, yes he was young at the time but we never it expected it to be so serious and longterm. He certainly does not forget. He has changed, he is much more clingy and went through an awful phase of being left alone. He also cries as soon as anyone tries to hold him in one place. Traumatic blood test one time!

XXX

 

[Rockell8788]

I will keep you update, pleae do the same.
What op is he having in July?
Jake had open pyeloplasty and fitted with a catherer direct from the effected kidney for 3 weeks to allow it to rest.
Being in hospital for his first 10 days of life certainly has had an impact on his. I wasn't able to hold him for 3 almost 4 days and he's never like being held since. I do wider if that because he had such little contact at the begining of life. he also will not let you hold him in one position thanks to his having a cannula fitted without being numbed and all his veins had collapsed they tried 5 times over 40mins when he had his septicaemia.
We're still waiting for Jakes mcug appointment starting to worry they have forgotten to book it as everything else has come through. Might have to give them a call next week.
I see your in Hampshire where abouts as that not particularly far from us?

 

[TeAmo]

He is just going in for a check cystoscopy. Its his third one. First time they made some cuts for his PUV and he has cathetar in. Was horrible. He was so upset.

Yeah I agree, although Cam was 7 weeks when he was first admitted it definately has affected him and how we care for him. He is such a little rugrat you wouldnt know anything was wrong with him...

We waited ages for his aswell!! I think it is because so many departments are involved in that one it took them ages to band their heads together and get it scheduled.

I am in Basingstoke hun! Not far at all xx

 

[Rockell8788]

Wow not far at all only about 40mind away if that.
I'm just so worried about the out come of this next test. We found out in may that he has scarring, already been told he will suffer from high blood pressure and poor renal functioning. I'm to scarred that it will be more worse news. I feel that I done something wrong during pregnancy and just wish it would all go away and he could be healthy again.
Sorry I'm moanin just having a bad day today

 

[TeAmo]

oh hun

I feel your pain completely. Cam's had so many test now. MCUG tests function? As I say Cams one kidney already isnt working, and the remaining is not functioning as it should. Its very frightening.

I guess in day to day life we kind of forget about it, although it is always on the back of my mind. When I sit down and really think how serious things could get it scares the life out of me. You always think the worse. Dr Nagra is brilliant. She always says to ask her anything, even if we think it is stupid. She mentions dialysis but says thats down to road, there are other options first.

So tell me what he has been diagnosed with so far again. I know he has PUV- has he had any of the nasty by products? Has he got any lasting damage other than the scarring? How has the septicaemia affected him? Im sorry if you've already said everything, just trying to get it all straight!

So weird how the boys have the same thing, but it has affected them differently. xx

 

[Rockell8788]

To be honest they don't really tell me much and when they do I can't wrap my head around it. His mag3 test at 6months old showed radioactive dye still heavily present in his left kidney after 1hr 15mins but his healthy right draine it completely after just 15mins. They didn't really say what that ment. I got told almost a year ago ratio was 54/46 but no idea what the ratio was for.
We was told he would be off his trimethroprim by 1 year now been told wont be til atleast 4/5 years, dilation hasnt decreased in 6 months and now he has scarring but the extent of the damage we don't know till the mcug test.
They didn't say whY the test is for so assuming to see the extent of scarring and the impact it's having.

Iv noticed with jake he can go hours with a dry nappy then it's suddenly fills up. Does can have this.

I was just havin a rubbish day yesterday and wishing I new the answers to everything and whether or not his condition was improving. Doesn't help we saw a stand in for stienbreker who couldn't really answer anything and told us total opposit to what we was orginally told would happen next

 

[TeAmo]

Oh hun, I completely agree. It is soooo much to take in. I went to an appointment without my hubby last time and have only just remembered something I hadnt told him which was about them looking at Cam's diet. You see soooo many different people and get told soooo much.

I just looked at Cam's notes and MCUG is to check for reflux. Not to worry you but that one was horrid. It checks the bladder really, they insert a catheter through the willy and fill the bladder. Cam screamed blue murder the entire time. I remember they couldn't get him to wee and kept filling his bladder until he pretty much burst.

I believe the 54/46 ratio is the kidney function but I would have thought they would need to do another DMSA to see what it is now. Maybe the scarring they are referring to is bladder scarring and not kidney?

I just noticed your ticker! I am blind. Congrats on your pregnancy! Is there any extra care you are getting in case you are having another boy?

xx

 

[Rockell8788]

Thanks, feeling guilty as Jake really needs me right now and I can't attend or hold him for 24hrs after his mcug test.
They definately said kidney scarring and not bladder, dh is going to call tomorrow to chase his appointment as they said it would be next month.
They said that they likelyhood of it appearing again in future children was very slim so hopefully all is well with this baby.

 

[TeAmo]

Im glad they have said the likelyhood is slim. Are they going to do extra scans on this babies kidneys? Are you finding out what you are having?

Campbell has a touch base appointment at Basingstoke Hospital tomorrow. Hoping to get them to do a full blood test to check his levels. Will let you know how it goes.

xx

 

[Rockell8788]

They will do an In depth scan of the bumps kidneys, if all is ok then won't need a follow up. I don't think we are finding out the sex this time.
How did cam's appointment go yesterday?
Ben trying to find Jakes letter with what happene at the appointment in may. Can't find it as now you mentioned dmsa I think that's what he's having done. I really can't remember. Haven't had chance to chase up the appointment yet been a hectic 2 weeks. Dh grandad died and I was in hospital for 3 days with an inflammed gall bladder. No idea why can only assume I passed a gall stone or had a mild infection.

 

[TeAmo]

Oh so sorry to hear about DHs grandad.

Are you feeling better? Bet that was horrendous for you, esp with being preggers.

His appt was okay, just with ped doc in basingstoke that we saw right back at the start. Cam had high blood pressure whilst we were there which we have known is a side affect of the non functioning kidney but up until now it had been fine. We now are armed with a lot of questions for southampton when he has his op on thursday.

xx

 

[Rockell8788]

How did everything good on Thursday hun?

 

[TeAmo]

Hey, thanks for remembering!

It was okay actually. He went under for a check cystoscopy. There is still a stricture there, but Mr Griffin thinks it looks good at the moment. He is going back for another one in January as they "can behave strangely". He still has high blood pressure so one of Nagra's team came to see us in there too. She wants to keep an eye on the blood pressure but isnt going to medicate it yet as she wants to see if it is consistently high. Nothing was mentioned about the reflux so I will bring it up next time I see them both in clinic.

xx

 

[TeAmo]

Hi Hun, are you still about? Hows your LO? xx