steriod side effects

[Tracyl]

Hi, my son was diagnosed in June 07, he was 3. We are now on his 11th relapse. He had a course of cyclophosphamide and that done the trick for a year but it has came back and we have had 2 relapses since August. This time seems to be worse and I think its the steriods.
He seems to be uncontrolable, very very hyper, aggressive, teary , moody, the list goes on. His school are having real difficulty with him as he is becoming very aggressive to other children and a nightmare to teach. His work is suffering as his attention span is zero.
I backdated the bad behaviour and it started the same time as his 2nd relapse i.e steriods.
I have a meeting with his teachers on friday, and although he gets punished for his behaviour I cant help feeling that its not his fault as no punishment has any effect. People dont understand and I am not sure if this is my real son anymore, I feel I dont know what to do.
Is anyone else experiencing behavioural problems.

[rosie]

Hi

We too have experiened a variety of behavioural side effects on prednisolone. My daughter is now 11, was diagnosed just before she was two years old. We have had 2 phases of nephrotic syndrome; in the early days we had seven or so relapses and she too had a couse of cyclophosphamide followed by a couple of years on levamisole, when she was on streoids during this time she was very aggressive for most of the treatment, but seemed a little depressed for one. I tried to get some help/advice from our general paeditrician (not nephrologist) but he seemed unable to give any, so I came across a book which I found extremely helpful - Coping with Prednisolone: And Other Cortisone-related Medicines (Paperback) by Eugenia Zuckerman (Author), Julie R. Ingelfinger (Author). It is available on Amazon and gives an adult's experience of being on high doses of steroids and is a useful insight into what the children may be experiencing. I actually bought a copy for the paeditrician but dont know whether he read it! My daughter was in remission from the age of 5 1/2 until last year when she was 10. The last phase of relapses has been slightly easier to deal with as she is older and easier to reason with. Our main problem over the past period of 3 relapses has been very poor self-esteem and depression/bursting into tears at the slightest thing rather than aggression; but as she is older we have been able to talk about it, she is aware it is the medication makes her react uncharacteristically at times, and we have been able to pre-empt any problems at school.

You might find it useful to read the book on Prednisolone and maybe give it to the school to read - I think it gives an interesting perspective into what people maybe experiencing on prednisolone. It certainly made me more understanding and tolerant of my daughters behaviour and I feel it helped me cope.

[Tracyl]

Thanks so much, you start to wonder if its just you.

Thanks again.