Anyone else have a child with Nephrotic Syndrome?

Ghiagirl · 07-07-2009, 08:11 PM

March this year my then 2yr old son (now 3) was diagnosed with Nephrotic Syndrome, a kidney disorder that results in his kidneys not functioning correctly and allowing protein that should be retained in his bloodstream, to be filtered through into his urine in high levels. This results in the poor little bugger swelling up like a balloon.

He has been in remission since April since being out of the Royal Childrens after a two week stint, but now looks to be relapsing as he is showing the signs and his home urine test showed high protein levels again.

Has anyone else on here suffered through this themselves or perhaps has a child who has had it or still does?

Cheers
Bec

falconboy · 07-07-2009, 08:22 PM

Sorry to hear about your son.

Luckily I don't have a major problem, although I do have a small amount of excess protein in my urine, not considered a problem, and they think its possibly related to only having one kidney (birth defect).

Best of luck with him.

Ghiagirl · 07-07-2009, 08:50 PM

Quote:

Originally Posted by falconboy

Sorry to hear about your son.

Luckily I don't have a major problem, although I do have a small amount of excess protein in my urine, not considered a problem, and they think its possibly related to only having one kidney (birth defect).

Best of luck with him.

Thanks buddy. Fortunately it doesn't seem to make him too uncomfortable physically, but he can't stand the barrage of meds that have to get forced into him on a daily basis and in massive dosages.

Best of luck with you too, having only the one kidney can't always have been easy.

falconboy · 07-07-2009, 09:18 PM

Honestly, I never knew. I was in hospital with a collapsed lung (and yes, I still bloody smoke!), and routine testing showed up the protein, which ended up getting to a scan that picked it up. I guess 'missed it' is more appropriate than 'picked it up'.

I should be fine as long as my one slightly enlarged good kidney doesn't pack up.

Please everyone consider becoming an organ donor. You don't realise just how important it could be until you may one day need one yourself.

Oh, by the way, having only one kidney isnt that uncommon, I forget which, but apparently 1 in 5000 or 1 in 10,000, and the majority don't know it.

Sorry to half hijack ghiagirl.

Ghiagirl · 07-07-2009, 09:30 PM

Hear hear!! There are massive waiting lists and everyday perfectly viable organs go to waste

Bmobile · 08-07-2009, 05:02 PM

It makes me sad to here of kids that have to go through the pain and suffering of such terrible illnesses. I wish you and your son the best of luck and a full recovery.

cheek · 08-07-2009, 05:11 PM

sorry to hear that mate,
ever since i was 2 (now 15) ive been goin to RCH because I have diabetes(1) and Coeliac Disease(allergy to wheat) and i have to say i couldnt ask for anything better from them, they really are great!

Ghiagirl · 08-07-2009, 06:21 PM

Quote:

Originally Posted by cheek

sorry to hear that mate,
ever since i was 2 (now 15) ive been goin to RCH because I have diabetes(1) and Coeliac Disease(allergy to wheat) and i have to say i couldnt ask for anything better from them, they really are great!

Agree with you 100%, I have nothing but praise for the fabulous team of Doctors and staff at RCH, we are increibly lucky to have such a wonderful facility here in Victoria.