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Campbell has kidney problems... updated: 12/08/11
- Thread starter Pudds86
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So update- No fungi found in his nails. His fingernails seem to have stopped falling off now though. His toenails are still very odd but the nephrologist doesnt think it is related to his kidneys.
We saw nephrologist on the 23rd April. Cam's blood pressure is still good so the non functioning kidney doesnt appear to yet be affecting that yet. His urea and creatinine levels are slightly raised so we need to get his bloods done again soon and also send in an early morning wee sample so we can get a true picture of how his remaining kidney is functioning. She also referred him to a dietician who reckons he is just small because thats the way he is meant to be! FINALLY!!! thats what I have been saying all along. She thinks he is a naturally healthy eater but he is the type of kid who can afford to have a few more treats than normal. I am to give him two high calorie snacks a day (lucky sod!) to try and maintain his weight and also we need to up his iron intake because his levels are slightly low.
I asked about how she sees this going...
well she cant promise anything. She said the next couple of years will be telling as the kidney matures around the age of two. She cant rule out a kidney transplant but that is down the road. Puberty will also be hard because its at that stage they often see a rapid decline in function.
I am so sad for my little man. I said to OH in the car on the way home that it is just not worth thinking about the face he could be on the donor list. Man its heartbreaking.
We saw nephrologist on the 23rd April. Cam's blood pressure is still good so the non functioning kidney doesnt appear to yet be affecting that yet. His urea and creatinine levels are slightly raised so we need to get his bloods done again soon and also send in an early morning wee sample so we can get a true picture of how his remaining kidney is functioning. She also referred him to a dietician who reckons he is just small because thats the way he is meant to be! FINALLY!!! thats what I have been saying all along. She thinks he is a naturally healthy eater but he is the type of kid who can afford to have a few more treats than normal. I am to give him two high calorie snacks a day (lucky sod!) to try and maintain his weight and also we need to up his iron intake because his levels are slightly low.
I asked about how she sees this going...
well she cant promise anything. She said the next couple of years will be telling as the kidney matures around the age of two. She cant rule out a kidney transplant but that is down the road. Puberty will also be hard because its at that stage they often see a rapid decline in function.
I am so sad for my little man. I said to OH in the car on the way home that it is just not worth thinking about the face he could be on the donor list. Man its heartbreaking.
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Helllo,
Don't really know if anyone is still following this at all, but I am updating for my records.
Campbell saw his nephrologist in November for a routine check up. We had noticed the week before he had begun to strain when he was having a wee. We weren't sure if this was because he has recently been potty trained and he was showing off or if it was of concern to them. We mentioned it. His check up was fine, bp was good. He is growing slowly but steadily. He is still on 2nd centile for both height and weight and is seeing a dietician. She says she thinks he eats well and is getting enough calories although a few high calorie snacks here and there wont hurt. Cam has a urine sample and bloods done.
A couple of days pass and I receive a phone call from our local Paed who says he has had a call from Nephro and they would like to get Campbell in for an urgent ultrasound. We aren't giving any information apart from they want to check he is emptying his bladder fully. This was on a Friday, they scanned him on the following Monday. Sonographer also doesn't divulge much, not sure she knew his history.
About a week after the checkup we get a letter from his Nephrologist. (She dictates it and it is typed in India so some of it doesn't make sense... NHS moneysaver?) It is the first letter I have had from them (we get one following each appt.) which has made me concerned. It explains that his blood tests show that his renal function has declined and that the urgent US was to check for blockages. I can only assume none were found so we are waiting to find out the next course of action. It also goes on to state that they have found protein in his urine, so this past week he has done three early morning wee samples. If there is protein in them he will be started on another medication, what I am not sure yet. It states that protein in the urine can cause a more rapid decline but if treated this can be stopped.
The reason I am not chasing answers any sooner is that Campbell is due in for his 6th cystoscopy on Thursday and I am hoping to talk through my concerns then with his urologist and maybe a sneaky apt with renal. We have to travel to Southampton to see them so its not like they are just around the corner.
I have a feeling something is going on up there and that maybe there is a blockage of some description. This last week or so it would seem he is losing bladder control. He sometimes thinks he is desperate for a wee and nothing comes out, other times he cant feel he is wetting himself. He never had this problem before.
time will tell. I will update when we are home from hospital.
xx
Don't really know if anyone is still following this at all, but I am updating for my records.
Campbell saw his nephrologist in November for a routine check up. We had noticed the week before he had begun to strain when he was having a wee. We weren't sure if this was because he has recently been potty trained and he was showing off or if it was of concern to them. We mentioned it. His check up was fine, bp was good. He is growing slowly but steadily. He is still on 2nd centile for both height and weight and is seeing a dietician. She says she thinks he eats well and is getting enough calories although a few high calorie snacks here and there wont hurt. Cam has a urine sample and bloods done.
A couple of days pass and I receive a phone call from our local Paed who says he has had a call from Nephro and they would like to get Campbell in for an urgent ultrasound. We aren't giving any information apart from they want to check he is emptying his bladder fully. This was on a Friday, they scanned him on the following Monday. Sonographer also doesn't divulge much, not sure she knew his history.
About a week after the checkup we get a letter from his Nephrologist. (She dictates it and it is typed in India so some of it doesn't make sense... NHS moneysaver?) It is the first letter I have had from them (we get one following each appt.) which has made me concerned. It explains that his blood tests show that his renal function has declined and that the urgent US was to check for blockages. I can only assume none were found so we are waiting to find out the next course of action. It also goes on to state that they have found protein in his urine, so this past week he has done three early morning wee samples. If there is protein in them he will be started on another medication, what I am not sure yet. It states that protein in the urine can cause a more rapid decline but if treated this can be stopped.
The reason I am not chasing answers any sooner is that Campbell is due in for his 6th cystoscopy on Thursday and I am hoping to talk through my concerns then with his urologist and maybe a sneaky apt with renal. We have to travel to Southampton to see them so its not like they are just around the corner.
I have a feeling something is going on up there and that maybe there is a blockage of some description. This last week or so it would seem he is losing bladder control. He sometimes thinks he is desperate for a wee and nothing comes out, other times he cant feel he is wetting himself. He never had this problem before.
time will tell. I will update when we are home from hospital.
xx
LYLLJellyTots
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All the best for the appointment today Hun,
Sorry to hear things have started to decline
everything crossed for some answers for you later x big hugs x
Sorry to hear things have started to decline
everything crossed for some answers for you later x big hugs x
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Today's op went well. There were no blockages and our consultant is happy that the stricture is behaving itself.
Campbell was the most upset I've seen him in theatre. He cried as he was put under and was a state when he woke up. Took me ages to calm him down and even after that he had a few meltdowns. Broke my heart.
Im a bit torn now. I was half expecting there was going to be something foubd because then I could put the decline down to something but as nothing was found it makes it all more a mystery. I am now hoping it isn't the start of things to come.
We also had a call from our GP while Cam was under to confirm that his urine results are still showing protein in his urine. This can mean a more rapid decline in function unless he is medicated. I am waiting for a call back to find out the next course of action.
Campbell was the most upset I've seen him in theatre. He cried as he was put under and was a state when he woke up. Took me ages to calm him down and even after that he had a few meltdowns. Broke my heart.
Im a bit torn now. I was half expecting there was going to be something foubd because then I could put the decline down to something but as nothing was found it makes it all more a mystery. I am now hoping it isn't the start of things to come.
We also had a call from our GP while Cam was under to confirm that his urine results are still showing protein in his urine. This can mean a more rapid decline in function unless he is medicated. I am waiting for a call back to find out the next course of action.
