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anyone's kids had nephrotic syndrome (plus me offloading stress)

(4 Posts)
nosyparker Thu 21-Apr-05 13:37:26

dear all
feel free to ignore - this is mostly me offloading a whole bag load of stress - we've had ds1 in hospital for last 5 days with suspected septicaemia and definite nephrotic syndrome (I would appreciate any words of advice if by any chance anyone has a child who has had this) and now at last he's at home. I'm just so happy and emotional at the same time and all this emotion has got to go somewhere so here you go mumsnet
After a temperature that rocketed and he put on 1.5kg in a week (700g of that in 20 hours) he was admitted emergency and put on so many wires/scanned etc poor little love. He was so brave about it and kept insisting he was fine bless. Luckily the blood tests eventually came back negative for pneumococcal bacteria and he was released today. I'm just skivving off now after days with him in the clinic.
Edited highlights include my paediatrician having to drive around town in the middle of the night trying to find suitable plasma and then having to pay for it herself with a wad load of cash after it was not delivered as promised as they wanted the money upfront but the clinic hadn't bothered to tell us. Also I have had to leave a large cheque with the clinic to get him discharged as my insurance company has not yet guaranteed payment. Long live the NHS for those of you lucky enough to have public healthcare is all I can say.
btw I used to be morocco for those of you who might have seen me on a couple of posts

noddyholder Thu 21-Apr-05 13:55:43

I know a bit about this Nephrotic syndrome is a protein leaking kidney condition which many kids suffer and they can also have relaoses The treatment as you said can be a plasma exchange or steroids it is vital to get it treated as it can cause long term probs if left.Did your son have any other symptoms before he fell ill?I just ask as kidney probs run in my family(i have had 2 transplants)and I have a young cousin with nephritic syndrome who took ages to get a diagnosis Hope he gets well soon xx

nosyparker Thu 21-Apr-05 19:32:40

hi noddyholder
he had bloating for a couple of weeks beforehand which I think I wrote off too easily as allergy, but no other real symptoms apart from looking pale which everyone commented on. I don't know if there are many other symptoms beforehand. I think my doctor did well to diagnose it pretty quickly but it all seemed to spiral out of control last weekend when he got sick really quickly: I should have taken him to the doctors a couple of days earlier as the swelling had come back we thought.
How is your cousin doing now? so is it something that runs in families also? thank you for posing - it's good to speak to other people about it - do you know if there is any website where parents can chat about this kind of thing in particular - (great though mumsnet is I wasnt sure there'd be many people on it with much knowledge about it)

noddyholder Fri 22-Apr-05 07:05:22

my cousin is 17 now and after 2 yrs of steroids is 'cured'.There is a little girl in ds's class who had this She had been on steroids for 4 yrs and is now coming off them and is in complete remission I watch my son like a hawk because of my problems but he never gets ill although I have thought he looked a bit puffy a couple of times no one else could see it!I know with nephrotic syndrome the illness side is quite bad and so I would notice it I'm sure.There is the national kidney federation website I will dig out the addresses for you.But a word of caution I had myself in a right state reading these sites and nephrotic syndrome is one of the treatable forms of kidney disease so may be worth leaving well alone for a while How is he doing now?It is so stressful I know dealing with hospitals?Did he have the plasma in the end or is he on prenisolone?I am very interested in the plasma as there is a possibility I could have this to stop my body rejecting the transplant They sometimes give it and it stops the need to take the drugs which have horrendous long term effects I hope your son gets well soon I hate seeing little children in the renal unit tbh but 99% of them recover and that is that I know the docs told my parents if I was a child now my condition could have been recognised and treated earlier

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