-
Xenforo Cloud upgraded our forum to XenForo version 2.3.4. This update has created styling issues to our current templates. We will continue to work on clearing up these issues for the next few days, but please report any other issues you may experience so we can look into. Thanks for your patience and understanding.
Campbell has kidney problems... updated: 12/08/11
- Thread starter Pudds86
- Start date
- Joined
- Dec 6, 2009
- Messages
- 7,665
- Reaction score
- 0
Well, not the good news we were hoping for. We had a follow up appointment on Weds with the paediatric doctor. Campbells left kidney is functioning at 2%. Anything less than 15% and they look at removing it. Okay, so everyone can function with one kidney which is fab! Only problem is Cam's right kidney has severe reflux. So now the doctor here is writing to the Urologists in Southampton Hospital to find out what they suggest is the next course of action.
It could be that they leave his as he is, continue taking the meds for the reflux and see if he outgrows it himself. Problem with this is leaving in the non functioning kidney could do more harm than good, it can cause him to have dangerously high blood pressure.
They may operate and remove the bad kidney, hoping to keep the blood pressure at bay and hope he grows out of the reflux.
They may operate and remove the kidney and also try to fix the reflux now- protecting the remaining good kidney. We need to be really careful about him getting and water infections. Doctor says that they are less and less likely the older he gets and more rare in boys than girls.
Next appt is in four months and in that time he is hoping we will hear from Southampton with the next course of action. He thinks they will want to see him down there.
Really thought the results would be good as they didnt call us, I mean you wouldn't know anything is wrong with my little man, he is so happy. Just wish he was 100%. Also the doc wanted him to have bloods done on weds too and he was such a good brave boy.
Just though i would keep you all updated xxxxxx
It could be that they leave his as he is, continue taking the meds for the reflux and see if he outgrows it himself. Problem with this is leaving in the non functioning kidney could do more harm than good, it can cause him to have dangerously high blood pressure.
They may operate and remove the bad kidney, hoping to keep the blood pressure at bay and hope he grows out of the reflux.
They may operate and remove the kidney and also try to fix the reflux now- protecting the remaining good kidney. We need to be really careful about him getting and water infections. Doctor says that they are less and less likely the older he gets and more rare in boys than girls.
Next appt is in four months and in that time he is hoping we will hear from Southampton with the next course of action. He thinks they will want to see him down there.
Really thought the results would be good as they didnt call us, I mean you wouldn't know anything is wrong with my little man, he is so happy. Just wish he was 100%. Also the doc wanted him to have bloods done on weds too and he was such a good brave boy.
Just though i would keep you all updated xxxxxx
inky
Well-Known Member
- Joined
- Dec 10, 2009
- Messages
- 5,915
- Reaction score
- 0
Oh no! 
I'm sorry it wasn't the good news you (and we!) were hoping for 
It sounds as though whatever the course of action, Campbell is in very good care and being well and thoroughly looked after. What a brave boy he is xxx
I'm sorry it wasn't the good news you (and we!) were hoping for It sounds as though whatever the course of action, Campbell is in very good care and being well and thoroughly looked after. What a brave boy he is
xxx
- Joined
- Dec 6, 2009
- Messages
- 7,665
- Reaction score
- 0
So, had a call last week from Southampton Hospital. The urologist there wants to see him on the 16th. Just a consultation, although I am a bit worried.
Today I have a voicemail from Southampton from 'admissions'. Im like WHAT THE!? Turns out they have booked Campbell in for an op on FRIDAY. omfg. Totally freaking out although I look as calm as can be. The woman said 'im not sure how much you know..' I was like 'umm nothing!'.
Doesnt sound too major or really like they are even sure what they are going to be doing but he will be under. Putting a camera in to begin with to have a nosy round- its going in his bladder?! I know there is reflux but I would have thought the real problem is with his non functional kidney.
She said the notes say about possible circumcision too? thought that was weird. They are then going to see what treatment they can do whilst they are in there...
god. Im glad they are helping him but so worried.
xxxx
Today I have a voicemail from Southampton from 'admissions'. Im like WHAT THE!? Turns out they have booked Campbell in for an op on FRIDAY. omfg. Totally freaking out although I look as calm as can be. The woman said 'im not sure how much you know..' I was like 'umm nothing!'.
Doesnt sound too major or really like they are even sure what they are going to be doing but he will be under. Putting a camera in to begin with to have a nosy round- its going in his bladder?! I know there is reflux but I would have thought the real problem is with his non functional kidney.
She said the notes say about possible circumcision too? thought that was weird. They are then going to see what treatment they can do whilst they are in there...
god. Im glad they are helping him but so worried.
xxxx
Elfs Mummy
Well-Known Member
- Joined
- Jul 29, 2010
- Messages
- 5,454
- Reaction score
- 187
Oh hun so sorry to hear this I hope everything goes well xx
Sent from my BlackBerry 9300 using Tapatalk
Sent from my BlackBerry 9300 using Tapatalk
Hunnie
Well-Known Member
- Joined
- Sep 4, 2011
- Messages
- 5,422
- Reaction score
- 0
Oh pudds I hope it all went well!
My OH has a little boy with another girl and he has kidney reflux problems. Grade 2 in and grade 3 in the other I think if that makes any sense? I don't know the ins and outs of it all but it means Sophie is on a low dose of anti biotics straight away to make sure she hasn't got it from my OHs side of the family. Xx
My OH has a little boy with another girl and he has kidney reflux problems. Grade 2 in and grade 3 in the other I think if that makes any sense? I don't know the ins and outs of it all but it means Sophie is on a low dose of anti biotics straight away to make sure she hasn't got it from my OHs side of the family. Xx
- Joined
- Dec 6, 2009
- Messages
- 7,665
- Reaction score
- 0
Campbell's op was on Jan 13th-
Hi girls,
The diagnosis is a bit complicated. We went in knowing his left kidney was only functioning at 2%. We also knew he had severe reflux on the right. When we got there doctor explained the been for urgency as Cam's scans were looked at, and they decided to get him in quick to stop any further damage. They went in thinking it was Posterior Urethral Valves. The outlook is this was the case meant that one third of boys with this go on to have renal problems, one third have incontinence. Also his bloods on day of the op were slightly off for his good kidney. Which I was more nervous about.
After the op, doctor confirmed that it wasn't exactly PUV but was millimeters from it. This changed the outlook. Luckily one of his colleagues had recently published a paper on this issue. Its been found that for 50% of the boys with this have issues resolved from the procedure he had yesterday. 50% then go on to have renal or wee issues. Only time will tell how it will affect Cam.
Doctor thinks he had this in utero, and that it damaged and killed his left kidney. his bloods being off yesterday on his right kidney means that he is now under a kidney specialist to keep an eye on the levels and growth.
going forward he will have bloods in two weeks, scan in 10 weeks, back under in 3 months.
Hi girls,
The diagnosis is a bit complicated. We went in knowing his left kidney was only functioning at 2%. We also knew he had severe reflux on the right. When we got there doctor explained the been for urgency as Cam's scans were looked at, and they decided to get him in quick to stop any further damage. They went in thinking it was Posterior Urethral Valves. The outlook is this was the case meant that one third of boys with this go on to have renal problems, one third have incontinence. Also his bloods on day of the op were slightly off for his good kidney. Which I was more nervous about.
After the op, doctor confirmed that it wasn't exactly PUV but was millimeters from it. This changed the outlook. Luckily one of his colleagues had recently published a paper on this issue. Its been found that for 50% of the boys with this have issues resolved from the procedure he had yesterday. 50% then go on to have renal or wee issues. Only time will tell how it will affect Cam.
Doctor thinks he had this in utero, and that it damaged and killed his left kidney. his bloods being off yesterday on his right kidney means that he is now under a kidney specialist to keep an eye on the levels and growth.
going forward he will have bloods in two weeks, scan in 10 weeks, back under in 3 months.
- Joined
- Dec 6, 2009
- Messages
- 7,665
- Reaction score
- 0
Since the above...
Campbell has another blood test- this was to check function on remaining kidney. The levels were high on them, so he had to go in the following day for more. Had call from doctor to say they were still off, he was going to phone southampton hospital to find out if anything needed to be done. I have left messages since but nothing further.... urgh.....
Campbell has another blood test- this was to check function on remaining kidney. The levels were high on them, so he had to go in the following day for more. Had call from doctor to say they were still off, he was going to phone southampton hospital to find out if anything needed to be done. I have left messages since but nothing further.... urgh.....
Laura_C
Well-Known Member
- Joined
- Jan 3, 2010
- Messages
- 2,326
- Reaction score
- 0
Oh Pudds, what a nightmare, poor little Cam
At least they have a plan of action for him now, can't believe it's taken then so long to get to this diagnosis if they felt he had this in utero. I strongly believe all pregnant women should have a scan soon before birth just to have one last check on baby. If I'd of not had a scan just before Grace was born then we wouldn't of known she had so kidney issues. Luckily she was on preventative treatment as soon as she was born to prevent damage and luckily she had grown out of these issues fully by the age of 4, finally discharged in Sept just gone.
Wishing you all the luck in the world hun, hopefully now they are on top of things Cam's care will be managed well. Xxxx
At least they have a plan of action for him now, can't believe it's taken then so long to get to this diagnosis if they felt he had this in utero. I strongly believe all pregnant women should have a scan soon before birth just to have one last check on baby. If I'd of not had a scan just before Grace was born then we wouldn't of known she had so kidney issues. Luckily she was on preventative treatment as soon as she was born to prevent damage and luckily she had grown out of these issues fully by the age of 4, finally discharged in Sept just gone.
Wishing you all the luck in the world hun, hopefully now they are on top of things Cam's care will be managed well. Xxxx
- Joined
- Dec 6, 2009
- Messages
- 7,665
- Reaction score
- 0
I am soooo angry about it to be honest... I was under consultant care throughout my pregnancy because of my BMI and cause my mom has diabetes. I had 6 scans throughout my pregnancy. Last one at 32 weeks. Nothing was picked up. It has then taken exactly a year to diagnose him. I asked the doctor outright if he thought the kidney issue was separate from the PUV but in his opinion the PUV happened in utero and damaged his kidney to stop it functioning... does that mean had it been picked up earlier, it might have been saved?
x
x
Laura_C
Well-Known Member
- Joined
- Jan 3, 2010
- Messages
- 2,326
- Reaction score
- 0
Hmmm it really does make you wonder :/
I wonder if his doc could go through your antenatal scans and have a look again to see if anything had be missed in utero or get another opinion from another radiography specialist. Not that it would particularly change anything for Cam now but it would hold those accountable if they did miss something and hope it raises awareness so it doesn't happen again. I'm currently battling with whether to go through my antenatal records with regards to my son, I too dot see how they missed he was so poorly. I too was under consultant care and I def know they were negligent on the mat ward when I was assessed at triage. They did not realise my son was in distress from the trace I had and sent me home - we lost our son a few days later. It just isn't good enough :/
I really hope Cam's treatment will be sorted soon and you have some more answers xxx
I wonder if his doc could go through your antenatal scans and have a look again to see if anything had be missed in utero or get another opinion from another radiography specialist. Not that it would particularly change anything for Cam now but it would hold those accountable if they did miss something and hope it raises awareness so it doesn't happen again. I'm currently battling with whether to go through my antenatal records with regards to my son, I too dot see how they missed he was so poorly. I too was under consultant care and I def know they were negligent on the mat ward when I was assessed at triage. They did not realise my son was in distress from the trace I had and sent me home - we lost our son a few days later. It just isn't good enough :/
I really hope Cam's treatment will be sorted soon and you have some more answers xxx
- Joined
- Dec 6, 2009
- Messages
- 7,665
- Reaction score
- 0
Yeah I have read your story hun, such a tragic loss for you. 
You are so brave.
It does make you wonder. I think I might try and pin them down at his next appointment but when I have asked before they have really beaten around the bush- they dont want to point blame.
All the research I have done has said that severe damage can be picked up on scans. I know he has cysts and damage on the non functioning kidney, so how was it missed? Also the nurse says it is not genetic, yet research I have found suggests that there could be a link between siblings and cousins.
Its very important for us because it really would impact having another baby. Cam will be going through this now until he is a teenager they reckon- longer if his kidney doesnt cope.
All is well at the moment though, once i have these results back I can relax for a little while.
xxx
You are so brave. It does make you wonder. I think I might try and pin them down at his next appointment but when I have asked before they have really beaten around the bush- they dont want to point blame.
All the research I have done has said that severe damage can be picked up on scans. I know he has cysts and damage on the non functioning kidney, so how was it missed? Also the nurse says it is not genetic, yet research I have found suggests that there could be a link between siblings and cousins.
Its very important for us because it really would impact having another baby. Cam will be going through this now until he is a teenager they reckon- longer if his kidney doesnt cope.
All is well at the moment though, once i have these results back I can relax for a little while.
xxx
- Joined
- Dec 6, 2009
- Messages
- 7,665
- Reaction score
- 0
Campbell went back in for a check cystoscopy on Friday. Doc said all is not finished yet, there is still a stricture there but instead of cutting, he stretched it a bit more. Cam was in and out in one day this time which was nice and didnt have to have a catheter.
He will be going back in in 3 months to another check.
Also had a kidney scan on Thursday just gone, dont have results yet but it is to check how well his remaining kidney is growing.
I also spoke to the consultants secretary as I was concerned we werent being kept up to date with the results. I am still waiting for some from February. It is tough because he is under 3 doctors in 2 hospitals!
She is going to call me on Wednesday with test results. xx
He will be going back in in 3 months to another check.
Also had a kidney scan on Thursday just gone, dont have results yet but it is to check how well his remaining kidney is growing.
I also spoke to the consultants secretary as I was concerned we werent being kept up to date with the results. I am still waiting for some from February. It is tough because he is under 3 doctors in 2 hospitals!
She is going to call me on Wednesday with test results. xx
- Joined
- Dec 6, 2009
- Messages
- 7,665
- Reaction score
- 0
Guess I am just updating as this is helping me kep track of how and when things have happened...
So had a call from the consultant yesterday after me having to chase them twice! I was concerned because I had not had all the results back from bloods in Feb and also more recent ones.
Consultant explained that he thinks the stricture will be sorted, but wants to put Cam back under on July 5th to check all is well. The kidney scan in January compared with the one in April doesnt seem to show any change. I dont know if this is good or not as the kidney should be growing to take on the extra workload. On the other hand this could be good because it might mean there are no cycts like on the bad one.
He also said that the bloods on the remaining kidney show that it is "not absolutely normal". He is concerned and wants Campbell to be look at by the kidney specialist. She did come to see us in Jan when he had his first operation and when the consultant checked Cams notes it said he was meant to see her 6 weeks following... yet nothing....
Not impressed I have had to point this out to them! grr. They wouldnt have even checked his bloods the last time had I not pointed it out on the notes.
Anyway, I had a call about an hour following this one to book Campbell in on Tuesday @ Southampton General for the kidney clinic... will update following that.
xxx
So had a call from the consultant yesterday after me having to chase them twice! I was concerned because I had not had all the results back from bloods in Feb and also more recent ones.
Consultant explained that he thinks the stricture will be sorted, but wants to put Cam back under on July 5th to check all is well. The kidney scan in January compared with the one in April doesnt seem to show any change. I dont know if this is good or not as the kidney should be growing to take on the extra workload. On the other hand this could be good because it might mean there are no cycts like on the bad one.
He also said that the bloods on the remaining kidney show that it is "not absolutely normal". He is concerned and wants Campbell to be look at by the kidney specialist. She did come to see us in Jan when he had his first operation and when the consultant checked Cams notes it said he was meant to see her 6 weeks following... yet nothing....
Not impressed I have had to point this out to them! grr. They wouldnt have even checked his bloods the last time had I not pointed it out on the notes.
Anyway, I had a call about an hour following this one to book Campbell in on Tuesday @ Southampton General for the kidney clinic... will update following that.
xxx
