coping with prednisolone

[tiggersreturn]

One of my dc has steroid dependant nephrotic syndrome, diagnosed in sept last year. He is now on 30mg a day and he weighs less than 15kg. He has many mood swings, aggression, biting and gets in more intense tantrums. He's 3 so hardly at a placid stage to start with. . Does anyone have any recommendations on how to handle the behaviour? I'm firm about boundaries, try and use distraction to head off the worst parts, keep him active when he has energy. It's also very hard for his dbs who take the brunt of the violence. His nursery say he's pretty good apart from the occasional biting episode. This is partly because he's a lovely sunny person and partly because they didn't really know him before he was diagnosed.

We are trying to wean him off the prednisolone but each time he has a relapse. He's now on a 2nd immuno suppressant with the aim of getting him off prednisolone.

Looking for advice and ideas of where to turn.

does he have a stomach upset from the prednisolone? my son often gets this when he has to take it. makes him very miserable.
A young child wouldnt say why he feels ill,but may show it through behaviour.
so might be worth trying an anti-acid. It wont totally get rid of the side effects but might help a little.

hi i have pm ed you

Thanks for the idea. He does sometimes complain his tummy hurts but since that tends to coincide with requests to wash his hands with soap and water after going to the toilet I've tended to dismiss it as typical 3 year old behaviour....

Hi! My DS seems to have outgrown his steroid sensitive nephrotic syndrome. I still vividly remember the tantrums. One particular episode where we were kept waiting for an appointment for a couple of hours and he ended up literally bouncing off the walls.... I kid you not!
Have you been referred to a specialist? We tried several times to wean DS off pred but he relapsed each time. It was so hard. We ended up taking the cyclophosphamide route. (Not saying you should.)
On the behaviour front. Well you've never seen a tantrum until you have seen a steroid fuelled one!

1. Deep breath.
2. This will not last!
3. Clear and immediate consequences.

Watch out for tiredness and hunger that can aggravate tantrums.

Thanks that's encouraging. Yes we're now being seen by great ormond street and he has just started cyclophosphamide. How long did it take you to get off the pred once he was on cycolphosphamide?

Thanks for all the advice.