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Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

General health

Anybody any knowledge of renal issues/uti's DMSA tests and stuff?

29 replies

SillyMillysMummy · 09/04/2007 21:04

Long I'm afraid but thought it might help to give the full story, so here goes.

My dd was rushed into hospital at 6 months where she was given various harrowing tests, only to be released with the diagnosis of unknown viral infection, after several more trips to the gp, day unit and a&e, I was called one morning to say that a urine test taken 6 weeks previous had shown up an infection and could i please collect some antibiotics . Following on from this she had to have further tests, MCUG, DMSA etc, and it turns out that she has severe renal reflux that goes right up to the kidneys on both sides, and now has reduced kidney function (63% on one side and 37% on the other). After speaking to the consultant paediatric nephrologist it was decided that she would be monitored and put on long term antibiotics and would hopefully grow out of the problem. She has had repeated infections and has had her antibiotics changed a couple of times, i have asked at the hospital that we generally attend to be reffered back to the consultant, who has asked them to carry out another dmsa, so basically my questions are

has anybody had the same kind of experiences, is this as common as i am led to beleive?
i have private healthcare but am told that peadiatric nephrologists are few and far between and the one i have already seen doesn't do private, what should i do, just wait?
does anybody know how safe it is for her to have had 2 dmsa's in 18 months?

any help from anybody in the know would be much appreciated, the only thing i can think of is to insist that she have the test and be seen at the hospital that the consultant is based, but can i do that?

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SillyMillysMummy · 10/04/2007 08:25

nobody?

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noddyholder · 10/04/2007 08:30

Hi I am not sure if I am any help but I have had 2 transplants and am fairly knowledgeable on renal issues.I know that reflux is extremely common and I had several of the renal scans you talk about after my 1st transplant as I kept getting infections.My original renal failure was caused by post strep throat where my kidneys became scarred and lost function.The doctors think I had the infection in my throat as a teenager(13ish)and I needed a transplant at 19.I think the dmsa is fairly safe The NHS has some amazing nephrologists.Who have you seen so far and where do you live?

Laura032004 · 10/04/2007 08:32

DS2 has kidney problems - 70/30 function in his case, although this is down to duplex kidneys, not reflux. He's had all those tests twice in the last nine months, but I don't know anything about the safety. He's had an op, so they needed to check if it had worked. I do believe that this is very common, and that they do often grow out of it. In a way, it is good that they have discovered it so early. Sometimes the child gets to 4 or 5 or even adulthood before they realise. No comfort though if your DD has had a lot of infections already.

Not much help, but a bump up if nothing else.

noddyholder · 10/04/2007 08:37

Def agree it is good to have discovered it early as my renal consultants at 18 said if I had had steroid treatment as a child I may have had a different outcome.I was always getting bugs as achild and repeated sore throats

SillyMillysMummy · 10/04/2007 08:43

thanks, i was thinking we were the only ones

noddyholder - i live in sunderland and have been to see dr coulthard at the rvi newcastle

do you think it is ok to call the rvi and request that she be seen there instead of having the test in sunderland and then having to wait for the rvi to review?

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SillyMillysMummy · 10/04/2007 08:47

noddyholder - post strep throat? its strange that 2 of you mention this, when dd was admitted at 6 months, after all the tests the only thing that they said showed up was some strep in her bloods, and that couldnt have been the cause because that usually appeared in the mouth

god, this thread has actually made me feel worse, the whole thing sounds more serious

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noddyholder · 10/04/2007 08:50

It is not the actual strep that damages the kidneys it is more complicated than that but I will try!
When I had the strep throat my body produced lots of white cells in response to it and to kill it (along with antibiotics)When the strep was destroyed my immune system just kept producing the white cells that kill infection and when they had no infection to kill they travel round the body looking for something to destroy In my case my kidneys.

SillyMillysMummy · 10/04/2007 08:54

right, i understand, is that common or rare? do they test for that kind of thing?

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noddyholder · 10/04/2007 08:56

I don't think it is that common.Does your dd have any day to day symptoms of reduced kidney function?

noddyholder · 10/04/2007 08:57

Sorry the only way of really testing is a biopsy iirc.What antibiotics is she on?Sorry for all teh questions

SillyMillysMummy · 10/04/2007 10:38

sorry to take so long, dh is off this week and goes mad that i soend time on the pc. dd is only 22 months so its probably difficult to tell whether she has symptoms, the only one i have been told about is high blood pressure as far as i am aware she is fine, she sometimes holds her back as if she is in pain but i cant really tell, she was on trimethoprim but they have changed her to cefalexin now

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LaDiDaDi · 10/04/2007 10:43

Dr Coulthard is excellent and I really think that his advice will be spot on so I would go with whatever he says tbh. I think it's fair enough to ask to be seen by Dr Coulthard again rather than being dealt with at Sunderland.

LaDiDaDi · 10/04/2007 10:46

It shouldn't really matter where she has the DMSA but I understand that you would want Malcolm Coulthard's opinions on the results.

SillyMillysMummy · 10/04/2007 10:53

thanks for that ladidadi, we found him very good when we last went to see him and i beleive that once she has had the dmsa that the results go to him to look at and then back to sunderland, but just seems a bit daft, and why shouldnt i have the best for dd? i beleive he is one of the best for this type of thing so i think i will ring his secretary today to try and arrange, will let you know how it goes

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LaDiDaDi · 10/04/2007 10:57

I was trying, not very clearly, to suggest having the DMSA at Sunderland then seeing MC at the RVI with the results. I didn't mean to get seen at Sunderland to get MC's views via a different doctor. That would seem pointless as you would probably have questions from the new info that the Sunderland doc might not be able to answer but MC could.

SillyMillysMummy · 10/04/2007 11:01

well thats what happened last time really, but the care just seems to be so disjointed, its not that anyone is bad with the info they give us, its just when we had the last 3 tests, it took 4 months to get them all and then another 3/4 weeks for the info to filter up to dr coulthard, its only when we went to see him that we really understood what was going on, i just want the best for dd as i am sure we all want for our dc, i just have this horrible feeling that this isnt going to go away and we are gonna have more problems

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SillyMillysMummy · 10/04/2007 11:03

sorry, when you say go to dr coulthard with the results, i am presuming that you mean wait until we are called for by him? i asked to see him when i went to south tyneside (sorry its not sunderland, just get confused) and they said he wouldnt see us unless they asked him to

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LaDiDaDi · 10/04/2007 11:07

Totally understand your pov re wanting the best for your dd .

Did they explain to you that the DMSA needs to be delayed at least 4 months from initial infection so that only changes to the kidney that are longterm scars rather than changes from the acute infection are picked up? That might explain why you felt the tests took a long time etc.

LaDiDaDi · 10/04/2007 11:11

Sorry, didn't see your last post. I meant ask for you lo to have her tests at Styneside but to get seen for all of her follow up by MC at rvi. I think that you would have to go through Styneside for this.

TBH I'm not sure that you'll have much luck in ringing up yourself and asking for your dd's care to be transferred entirely to MC though I could be wrong.

I'm off to bed now but I'll check up later to see how you get on .

SillyMillysMummy · 10/04/2007 11:13

no, i didnt know that, maybe they did tell me but didnt catch on. can i ask why you say have the dmsa here and then wait to see dr coulthard? I just dont think i could bear seeing the dmsa on the screen (we saw it last time) and now knowing more about it, realising that it is worse and nobody telling us anything about it until we finally get to see dr coulthard, i wish i could go private tbh i wouldnt feel as bad then demanding stuff, and thats what i feel that i want to do

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SillyMillysMummy · 10/04/2007 11:14

right, am gonna ring anyway, bugger it, they can only say no, will let you know

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noddyholder · 10/04/2007 11:16

I was on cephalexin for yrs.I have also heard that dr coulthard is good.Blood pressure is one of the things to really monitor.It is a chicken and egg scenario where bp raised damages kidneys and damaged kidneys raise bp!Definitely ring it is a serious issue and you are worried.

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hannahsaunt · 10/04/2007 11:24

Dh is a nephrologist and he would advocate calling - it's fine. I think because nephrologists tend to see patients for a very long time, getting to know them very well (and with a relatively small cohort of patients compared with some areas) they expect active engagement with the patients - call them up with results, happy to make appointments to see them, that sort of thing. Certainly, the patients here have the direct line to the doctors room rather than going through secretaries if they have queries (and as such, no one really abuses it either). The consultant will probably be happy to talk you through all that is/will be happening.

All the best.

pansypants · 10/04/2007 11:33

agree that sometimes its best to have tests and consultant reviews in the dame hospital, it will cut down on waiting ofr results etc, stick to your guns and insist on joined up care. Cins, and drs and anc, satff will all know and talk to eachother regularly in the same hospitsl, they will kn ow what each cons likes , but not if the test are done in different hospitals. However if the waiting list is less at sunderland i would be tempted to have the first one done there.

SillyMillysMummy · 10/04/2007 11:57

ok, have called and dr coulthards secretary is on holiday but the lady who is covering her work is going to pull the file and ask dr coulthrard for an appointment to discuss transferring care directly to rvi, when i get to see him i am gonna ask if the waiting list is long for the dmsa, if so am gonna look into private care, dont really want to cmplicate things and i have nothing against the nhs care, but my dd is only 2 years old and i would never forgive myself if more comes of this and i hadn't done everything in my power to help. does anybody know how to go about the private care thing? i know that i need to contact the company and be referred by my gp, thats not a problem, but does anybody know who is best in this field?

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