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

[SillyMillysMummy]

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

1. has anybody had the same kind of experiences, is this as common as i am led to beleive?
2. 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?
3. 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?

Your experience sounds very much like my DS. His kidney reflux was picked up at 5 months old when he was very ill (it was originally thought he had meningitis). He had all the tests MCUG & DMSA and he also had reduced kidney function which worringly as well left him with high blood pressure. It was not thought that he would outgrow this so my DS was then refferred on to Birmingham Childrens Hospital where they carried out a procedure at 14 months old, 'Macroplastique Injections' which involved injecting a teflon like substance into the valves in his bladder to stop his urine refluxing, Thankfully the procedure worked and they repeated the tests which showed no reflux at all. He is 9 now and has had no reoccurence of the reflux and even his blood pressure settled around the age of 3/4 and that isn't a problem now.

slightly def to other mummys but i was digonised at 20 week scan that my
ds had renal pelvic dilation told that as he grow it would get better at 30 weeks had another scan and it showed that he still had it.

when he was born he was put on antib's for 6 weeeks untill another scan which showed that he had it in one tube and that the other was tube was getting smaller(more normal)

ds stayed on a/b's untill he was 12months old where he had another scan and was shown that he had grown out of it .

was told that this condition is
A runs in families
B the main reason why children get urine infections all the time

good luck xxx

The suggestion of tests at S tyneside and review at RVI was just because for a DMSA the test will be the same at either hospital and I thought it would ease your travelling. If you don't mind, and I know it's not that far, then having it all done at the RVI shouldn't be a problem if MC is happy with it.

I really would think twice about considering private care for your dd. If her care gets transferred to the RVI then private care would not add anything to the service she would receive there imho and may in fact complicate matters. Having said that there are two other paediatric nephrologists at the RVI, Dr Moghal and Dr Lambert and I suppose if either of them did private work then then maybe you could see them but I really don't think that you would get faster or better care than you would from Dr Coulthard via the nhs, especially as he is particularly interested in UTI.

.

thanks very much everybody, your experiences are very interesting as i like to have as much knowledge of these things as i can, espescially thanks to ladidadi, you are obviously very involved with this kind of thing in the area and everything you have said makes sense, just waiting of a call from the rvi now, am sure that dr coulthard will see us as he promised me last time that any concerns that we had we could see him.
dellie, they too thought my dd had meningitus but took months after to realise that it was uti
hitchcock, thank god you got it diagnosed pre birth, may have saved your dc from all this bother, dr coulthard has explained that it is genetic and has given me a letter in case of any more pregnancys, but cant help feeling that it should have been seen on pre birth scans with this dd, still very angry that all this got so far