Any Kidney-kids?

[angelstardust]

My 6 year old has had massive proteinuria and microhaematuria since April, his protein/creatinine ratio is now at 0.283 and we will be seeing the renal specialist soon.

He's had an xray and a ultrasound scan and the kidneys appear normal which means it is some sort of glomerular or nephron issue and next up will be a biopsy.

Just looking to see if anyone has any experience of kidney problems?

 

[Lottie86]

I don't have any real experience other than the kidney ultrasounds but just wanted to wish you all the best with the tests. Has he had a DMSA scan done yet? Iona's consultant has said that would be their next stage renal investigation with her if she needs it.

 

[angelstardust]

No he hasn't, he hasn't seen a renal specialist yet, just a paediatric consultant. I think they thought it would all go away and put it down to a blip, in fairness I hoped that too.

 

[Leopard]

My daughter has a duplicated left ureter system, bilateral hydronephrosis and grade IV vesico-ureteral reflux that will require surgery, not anything like yours, but still kidey related

 

[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

 

[danimarie]

my daughter has duplex kidneys but at the minute causing no problems (touch wood) just got to keep an eye for urine infections etc, but she has other health issues that affect her more xx

 

[Leopard]

Just found out LOs left kidney is functioning at 36% split function, her right kidney is picking up the slack.

 

[angelstardust]

Well got an appointment for the nephrologist in April. More blood tests have been done but still not been informed about what they are testing.

He's been very ill with headaches and tonsilitis... whcih turned out not to be tonsilitis all his swabs were clear, so they think it may be an immune disorder affecting the kidneys.

His headaches are very bad right now.

 

[Leopard]

They've told me they won't be doing anything until her kidneys either heal or fail. I'm not happy.
another renal scan in April and a cranial scan as well.

Angel

 

[angelstardust]

They've told me they won't be doing anything until her kidneys either heal or fail. I'm not happy.
another renal scan in April and a cranial scan as well.

Angel

That must be worrying and stressfull having to sit about 'waiting and seeing'.

 

[emmamc258]

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]

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]

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]

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]

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.