Any Kidney-kids? - Page 2

emmamc258 · Apr 10th, 2012, 08:28 AM

Quote:

purplerat Hi, my son has poly cystic kidney disease and is going to have a transplant next year. His creatinine is around 150 (normal in UK is 30's) and he doesn't eat food really, just drinks special milk.

Good luck for his biopsy. I hope everything is ok xx

Hi everyone, my son was born with posterior urethral valve (a blockage in his bladder) which meant by the time he was born his kidneys were already severely damaged, and we were told he would need dialysis as soon as he arrived. He is now almost 7 (bday in July) and hasn't needed it yet! I just wanted to say specifically to purplerat, don't always take the doctors word for it, as they can be wrong! Matthew's creatinine reached 150 a few years ago, he has just reached 320 at his last clinic appointment, and they are starting on his transplant work up now, They think he will probably start on dialysis towards the end of the summer (can't do an immediate transplant as they need to sort out his bladder first, which they want to do whilst he's on dialysis to minimise any repercussions). So just keep doing what ur doing and hopefully he can hold out that little bit longer, they are such brave and strong little souls, they often surprise us! My fingers are crossed for all of u who have poorly little ones and hope that they all get well very very soon.
Emma

frosty3 · Apr 15th, 2012, 14:38 PM

hi my son is 8 weeks old and was diagnosed with puv at 2 weeks old( it wasent detected on the pregnancy scans). He was really ill when he was born as his kidney burst whilst i was pregnancy with him. He has his first operation to remove the valve at 2weeks old and is having another operation on Tuesday to remove more of the valve. he has a thickened bladder and one of this kidneys are working harder to support the other. We haven't been told much about his condition or what his future holds.

mamawannabee · Apr 30th, 2012, 10:45 AM

I just came across this in my search for other kidney kids too, our LO has a pelvic multi cystic dysplastic kidney, and will likely end up with just one kidney as the MCD one isn't working at all. At this point she is just being watched, but was allowed off her antibiotics that she had been on since birth after an u/s and VCUG last month at Children's hospital. We are just hoping and praying that the other one continues to function well to prevent needing dialysis or a transplant, but for now they say it looks good. During pregnancy when they first diagnosed it, they thought it was both, so we weren't sure if she would make it, so we are so thankful to have gotten to this point, but I just never stop worrying about it.

lilbumpblue · May 7th, 2012, 15:15 PM

Hey hunni my lb has kidney reflux and bilateral cystic dysplastic kidneys...he was diagnosed April 2011 at 7 months old after being admitted for slow weight gain. His kidneys function at half of normal which the nephrologist says is good and he is on a low dose antibiotic each eveniing to prevent infection. He also doesnt eat but takes peadiasure fibre plus and despite being PEG fed each evening still is slow to gain weight. What milk is your little boy on purplerat? Lottie how do your lo's cope being tube fed? James wakes a few times a night really uncomfortable...any tips? xx

angelstardust · May 12th, 2012, 13:42 PM

Just a little update, he had a biopsy a few weeks ago and he has IgA Nephropathy. Around grade 3. No inflamation causing trouble, but 50% of functioning glomeruli are showing IgA deposits and there has been about 20-30% of glomeruli that have been completely obliterated.

However, his kidney function is looking okay. Starting on ACE inhibitors for his BP, which is very high (99th centile).

Is anyone aware of or using the kidney patient view? We have to register and then we can access all his blood test results, medicatons, clinic notes, diagnosis, letters etc.

Apr 15th, 2012, 14:38 PM	#12
frosty3 Mum (Mom) New BnB member Join Date: Apr 2012 Posts: 1	hi my son is 8 weeks old and was diagnosed with puv at 2 weeks old( it wasent detected on the pregnancy scans). He was really ill when he was born as his kidney burst whilst i was pregnancy with him. He has his first operation to remove the valve at 2weeks old and is having another operation on Tuesday to remove more of the valve. he has a thickened bladder and one of this kidneys are working harder to support the other. We haven't been told much about his condition or what his future holds.

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Apr 30th, 2012, 10:45 AM	#13
mamawannabee Mum (Mom) Chat Happy BnB Member Join Date: Apr 2011 Location: United States Posts: 1,652	I just came across this in my search for other kidney kids too, our LO has a pelvic multi cystic dysplastic kidney, and will likely end up with just one kidney as the MCD one isn't working at all. At this point she is just being watched, but was allowed off her antibiotics that she had been on since birth after an u/s and VCUG last month at Children's hospital. We are just hoping and praying that the other one continues to function well to prevent needing dialysis or a transplant, but for now they say it looks good. During pregnancy when they first diagnosed it, they thought it was both, so we weren't sure if she would make it, so we are so thankful to have gotten to this point, but I just never stop worrying about it.

Status: Offline

May 7th, 2012, 15:15 PM	#14
lilbumpblue Mum (Mom) BnB Addict Join Date: May 2010 Location: Staffordshire Posts: 2,506	Hey hunni my lb has kidney reflux and bilateral cystic dysplastic kidneys...he was diagnosed April 2011 at 7 months old after being admitted for slow weight gain. His kidneys function at half of normal which the nephrologist says is good and he is on a low dose antibiotic each eveniing to prevent infection. He also doesnt eat but takes peadiasure fibre plus and despite being PEG fed each evening still is slow to gain weight. What milk is your little boy on purplerat? Lottie how do your lo's cope being tube fed? James wakes a few times a night really uncomfortable...any tips? xx

Status: Offline

May 12th, 2012, 13:42 PM	#15
angelstardust Mum (Mom) Chat Happy BnB Member Join Date: Jan 2009 Location: Ayrshire, Scotland Posts: 2,343	Just a little update, he had a biopsy a few weeks ago and he has IgA Nephropathy. Around grade 3. No inflamation causing trouble, but 50% of functioning glomeruli are showing IgA deposits and there has been about 20-30% of glomeruli that have been completely obliterated. However, his kidney function is looking okay. Starting on ACE inhibitors for his BP, which is very high (99th centile). Is anyone aware of or using the kidney patient view? We have to register and then we can access all his blood test results, medicatons, clinic notes, diagnosis, letters etc.

Status: Offline

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