hi i wonder if anyone is in contact with mina as i really wanted to talk to her! i did send a pm , am very new to the site sorry, not sure if she would be notified by email? my son has the exact same traits as her son and has the same disease but it is ALL down to the medication ! but rarely do the doctors admit this!! hope to hear back from her soon many thanks sonia

hi mina i read your posts with avid interest, i did send you a pm. i foun this thread as im looking at how to get the dla for my son now 15 who has nephrotic syndrome (minimal change) and has the exact same behaviours as your son due to the high dose prednisolone medication prescribed. does this sound possible to you? it does cause mania, depression and all sorts of horrors. how did you manage to get dla i was refused twice its so disheartening when you need all your energy and have so much on your hands what with frothy urine, water retention etc just a question does your son exhibit worse behaviours when he is hungry? mine was just awful and really self harming i got him to see the sen team and be under camhs by taking him to a and e and my son told them he was going to kill himself . they took him seriously. anyhoo we managed to get him off the steroids (severe emotional and behavioural side effects) and on to tacrolimus which has been great and i have my son back but now he is just relapsing so will be back on the pred...oh my god there goes my life and i have a newborn too! hell on earth!! sonia