National Kidney Federation for Early Chronic Kidney Disease

Nephrotic Syndrome

clairebear261180
Posted by clairebear261180
2 Sep 2012
5 comments

My son is 5 years old and was diagnosed with Nephrotic Syndrome at the age of 2. The treatment for my son's condition during a relapse is high dose long term steroid treatment(predisilone) which has numerous side effects including insomnia, mood swings, increased appetite, weight gain etc the list is endless.

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5 comments

googie
googie
5 Sep 2012
Bless him :( how is he coping?

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weesprout
weesprout
19 Sep 2012
poor wee sole, it must be so hard on you too, i think kids kind of take it all in their stide but i cant imagine what it must be like to watch your child suffer xxx

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HayleyDeves
HayleyDeves
7 Oct 2012
Hi Clairebear,
My son is 9 and i am quite worried about him.He has thyroid and hearing problems and has recently been having problems with his kidneys.He has blood and protein in his urine (for over 2 months now) but no infection.The docs say his kidney blood test was fine, but i'm not so sure.He is tired and bloated and puffy and craves sweet things but they have tested him for diabetes and again he's fine.....
His urine is also 7.5 alkaline ,so quite high....
I Don't know what to do as the docs are just so unhelpful ....
Sorry to hear about your son, have you thought about changing his diet instaed of putting him on meds?
- does my experience sound familiar do you think?

hayley

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NKFHelpline
NKFHelpline NKF
16 Oct 2012
I have attached a link to the Nephrotic Syndrome Trust webpage which has a forum specifically for nephrotic syndrome patients which might be useful

www.nstrust.co.uk/pages/home

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tfc5
tfc5 NKF
2 Jan 2013
Sorry to hear about your son. Im 42 and on prednisolone and its hard enough for adults to deal with the side affects, let alone a 5 year old. One thing I find helps is eating little and often rather than big meals.

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