Multicystic dysplastic kidney
- Forums
- Special needs
- Multicystic dysplastic kidney
6/11/08 23:34
22/10/08 20:15
Hi everyone
Lo turned 1 in september and had appt with his paedritrician from local hospital da;y after his birthday, so asked when lo would have his nxt kidney scan as consultant wanted it done by end of october, but dr at local hospital said wouldn't be done till January, not happy with this as we were told it had to be done every 6months last one was in april, so moaned at our gp also lo has had 3 uti's since coming off trimethropin and an infection in his penis, so finally have kidney scan on Mon 27th Oct and appt with consultant on 6th nov so hopefully will finally know if he has to have his kidney out or not, thats all i want to know i'm fed up of them telling me they will see next time, I don't mind (if he has to have removal) if its not done till he's 2 but i just want to know otherwise i will scream. Sorry for going on but am fed up with hospitals, doctors etc not telling me whats happening.
20/10/08 22:23
I'm glad I finally found the thread!
My ds2 was diagnosed with MCDK at my 20week scan He is now 5 weeks old and we saw the consultant today at St Georges who is arranging for us to have the DMSA scan and another (I forget the name) in december/january time.
Edward seems to have one fully functioning kidney and one that has not connected up properly and is full of cysts, one very large one and lots of small ones. He is not on any antibiotics. It has been really useful reading about other lo in similar situation and how they do the scans. So thanks for this thread.
I'll keep you updated.
Thanks
Debbie
27/7/08 22:44
hi
Just wondering is it usual for lo who seems to be not having as heavy a nappy as usual. He's been off the trimethropin for 3 weeks now and have had no problems until friday, when i noticed is nappies weren't as wet as usual. He is drinking lots and eating fine or could it just be that its such hot weather and he is sweating alot. I could be overacting or should i speak to my gp.
Thanks also for all information that people have given me
13/7/08 19:42
Hi there
Just to let you know my ds had a kidney removed and was curcumscised at the same time when he was 24 months..touch wood he hasn't had an infection since so it was a real turning point. But unlike your child my sons kidney hadn't ever worked and hadn't properly formed so I was led to believe it was quite small and they removed it by keyhole surgery. It still took about four hours in all for them to operate but like I say he bounced back well and we haven't look back since. His other kidney has cysts and isn't fantastic but we're still plodding on. Good luck and feel free to pm me if you have any other questions.
13/7/08 10:27
Hi everyone
My lo had his kidney review on 10th July. Don't know how i feel, they told us kidney hasn,t got bigger but it hasn,t got smaller either so will review him again in october with another scan if it hasn,t got smaller they will probably remove it but it will have to be major surgery as the kidney is so big which im really worried about - what age do they usually remove the kidney, and how long does it take the baby to recover? (he's now 10 months), but he can now come off trimethropin but have to keep an eye out for utis. They also send he might need a circumcision as his penis slightly balloons when he wees. I feel like we take one step forward and two steps back!!!!
23/6/08 15:15
Something that comes up on here alot is utis and as someone said it is important to catch it quick! Taking sticks to test own is good idea, i managed to take from midwife when pregnant but will have to ask GP! I felt a bit unwell the other day, had pain in back and thought must have infection so got antibiotics (good old trimethoprin!) but am now not sure it was that! Its always best to take it anyway, as it wont hurt you, but leaving a uti can. When i was 2ish i was ill fo 2 weeks, my mum knew it was an uti but the doctor said it wasn't and she was overreacting. Eventually mum took me to casualty where it was an infection and it possibly damaged my kidney bit more. The hospital wrote the GP a letter and we never had that prob again.
21/6/08 23:16
hi everyone
Finally have appt to see kidney specialist on 10th July. He had scan but they didn't really tell us anything. Hopefully they tell us that he won't have to have it out. He is doing really well now 9mths old and weighing nearly 20lbs. I will let you know how he gets on
17/6/08 22:22
hi i’m new on here but just been reading about your lo having a multi cystic kidney. my lo kieran also has a multi cystis kidney and has been on antibiotics since birth he is now nearly 6 months but it was picked up on my 20 week scan and since birth he has had lots of scans done. the one with the dye up his willy was fine not worried at all but he wasn’t keen on the radiation one more painfull for him bless him.
i have been told that he will need regular scans but he won’t have to have his kidney taken out as it’s not causing any problems to him even though it’s not working at all.
it has been a very worring time and i’ve been very confused as i’ve been told different things by different people.
hope all is going well with your lo xx
10/6/08 21:57
My dd has a duplex right kidney and a refluxing left kidney. She is on trimeth.. can't remember spelling! every day. We refused the dmsa and the mcug as felt they were unecessarily distressing to a child and she is having regular ultrasounds and urine samples. She has only had the one uti and is a very well baby. If she was constantly ill then we would, of course, have the tests. She is 10 months.
8/6/08 15:46
hiya girlies, i havent been on for a while hope every u and all your little ones are all ok? im a little up the wall at the mo as amber has another water infection, this is 4 now in 14 weeks and it is annoying bcoz she is suffering and there is nothing i can do. i wish they would hurry her scan up as this time there was blood in her urine which has never happened b4 so im getting more anxious and in patient i really need to no wot is going on sorry 4 the little moan xxxxxxxxxxxxx
12/5/08 08:19
still crappin it.
they said a small tube will go up his willy a dye put in then under some light thing to see what happens i dont want to see my baby go threw pain again the canulas that was in whilst in hospital and the lumbar puncture and needle into bladder ect was bad anothe. might just keep him on the meds till he about 18 months and then see what happens with out the tests it sounds nasty.
11/5/08 19:57
Oliver has also had that one! We were stuck in the hospital all day!
11/5/08 16:02
Sorry i was bit confused about the dye test - i had the one similar to what laura mentioned - i had dye injected and blood tests every half hour for 4 hrs (how boring waiting in hosp that long!) and for last one i had to lie down for half hour too?!? That was to see exact kidney function tho, rate it filtered the dye. Hope it goes ok, none of these tests are very pleasant are they?
10/5/08 18:07
The dye test was done with us next to him. It was a cathiter up the willy and the dye injected into it until his bladder was full then they watch as he wees it out. This will show if there is a blockage anywhere. Oliver wasnt worried about this at all. The one he hates is when radiation is injected into a vain. This than travels to the bladder and kidneys and you can watch as the kidneys and bladder fill up and empty. For this test he needs to be straped down to a bed and held very still for half an hour. This is a nightmear when he is a very lively boy!
10/5/08 11:26
the dye test must be more painful for a boy though wouldnt it. how long does it take and do they take them away to do it?
9/5/08 19:26
Hi, only just read this thread and thought maybe i could give you some piece of mind. I'm 26 and was born with only one kidney, and the one i have has never functioned at 100% - is cysted etc prob functions more round 30/40%. When my mum was told at her scan, and when i was born, she was even told i would die. However I am as yet to go on dialysis and nobody knows if i ever will do, hopefully the function will stay stable but doctors dont really know as obviously some people with 2 healthy kidneys end up on dialyis sometimes! I have check ups every 6 mths which includes a blood test but used to it now.
Biggest news is that 6 months ago i gave birth to a perfectly healthy baby boy, who i still cant believe is mine! I managed a normal pregnancy and had him just a week early in 3 hrs!! Doctors said i'd be in hospital for months and would get pre-eclampsia but i proved them all wrong! They also thought andrew may have kidney issues but hea has 2 normal working ones! My kidney is damaged a bit more after having andrew but hopefully will stay stable at least til he's grown up, don't think can risk another baby tho!
Good luck and if you have any questions bout your childrens' conditions just let me know - i'll be only too happy to help!
Marie
PS: I've had the dye test a few times too
8/5/08 22:08
my son has had the dye test twice now, Please pm me if I can help at all.
8/5/08 16:07
i cant be much help, i have a 13 weeks baby on trimethoprim as he had urine/kidney infection at 2 weeks old. he had scan whilst in the hospital on antibotics through canula, but was discharged after being in for a week and i have been told he needs another scan at 6 months aswell as a dye test for his tubes, im not lookin forward to it at all but i am realy hoping it goes well.
7/5/08 20:16
If shes getting lots of utis it worth asking your hospital or gp for some urine testing sticks to have at home. I've always been told its important to catch the infection early so they should supply no probs, also its worth making sure you've got a decent themometre as a rise in temp is also another sign of infection. Good luck and heres hoping its just a wee blip (whoops no pun intended!)
Hi everyone
Had lo hospital appt today. I am so angry with them that i have spent the evening crying not helping the fact that i was at a very good friend's funeral today. Got too appt and they said that lo wasn't on the appt list even though they had sent me a letter a couple of weeks ago. They then couldn't get his hospital notes. His paedritrician came out and asked what we were coming to see the consultant for, how ridiculous you think they would know by now. We then had to explain that we were coming for the results of his kidney scan and talking about his circumcision. We finally got in there and they examined him and said that he needed to have circumcision done in the next couple of months hopefully before christmas, and hopefully just as a day case but knowing lo it will be an overnighter. They then looked at his kidney scan and said that there was no report with it so they would have to ask the ultrasound team for the report. We then asked if it was going to come out eventually, they still didn't give me a definate answer. They want him to get bigger and hopefully his breathing will be better so they are going to do another scan in about 9months. I asked them what was the percentage of him having it out and she said 50% but they wanted him to be older and stronger as its a major op which is fine but i wish they would just make a decision, also this will then be 5 general anaestetics which musn't be doing him any good. I am just so fed up with whole process i just want my little boy to enjoy his childhood and not have to keep going to these stupid bloody hospitals. Sorry for going on i just need to vent some of my frustration as although my husband is fairly good he just doesn't understand my feelings. Hope everyone else's lo's are doing well. Thanks for listening to me drone on.i'm just glad my lo is a happy little man and doesn't seem to mind been prodded and poked by people