Louis is now just about to be 7. He’s razor sharp, hilarious and full of life. He was diagnosed when he was about 18 months. He had grown bigger….we had commented that he had started to look like a twin of his older brother. After a while though, he looked more puffy and his legs were not particularly soft… so we took him to the doctor. They very quickly diagnosed nephrotic syndrome.
He was put on a big course of prednisolone steroid. 30 mg per day. It did the trick… but made him very very twitchy. He really struggled to sleep; he was quite hyper and very emotional.
“He’s very polite and calm at school and doing really well and never has a smile off his face”
However, that eased as the doses came down. The regime was very tough in those early periods… every time he had a relapse (roughly every few months) we would be told to go back to the full 30 mg dose and then very slowly ease back. It was quite a few years later that the tactics changed. When he did relapse… it would be a very short sharp shock of higher drugs… till the protein readings came down….and then straight back to the holding doses.
That seems to have worked much better. We can now pretty accurately spot an imminent relapse from his behaviour… which tends to get more difficult about 48 hours before the protein numbers climb. I’ve started to increase my doses when I spot that….and that seems to head it off at the pass fairly effectively.
Louis tends to relapse every few months still… little illnesses like colds and flu or stomach bugs tend to then lead to a relapse. But the short sharp shock of a higher dose of prednisolone….tends to get us clear within about 5 days. We haven’t noticed any particular food types or any other environmental factors that trigger a relapse…. anything that tires him out/or drains him….tends to tilt him over. We have tried a couple of other drug regimes.… levamisol and cyclophosphomide?… both didn’t really do much…. and we returned to the prednisolone steroid regime. The doctors have said we can’t continue with that indefinitely and are talking about another drug, cyclosporin…which we will have to try in the next few months.
The doctors talked in the early stages of perhaps Louis growing out of it at the age of 5…clearly that didn’t happen but they say around 10 and 15 some children seem to get clear of it. We have got quite used to managing it after all of this time. Louis can test himself with the albustix and his urine….he knows what the higher readings are….and we get him to take the steroid in the morning.
His behaviour I’m sure is affected by the drugs…especially on the higher doses…..but broadly he copes fantastically well…and you would never guess there was any problem. He’s very polite and calm at school and doing really well and never has a smile off his face.
But long term it would be lovely to get shot of it…..because you worry about taking all of these drugs for an extended period of time. In the early stages….we were very keen to speak to people with similar experiences…and it was really useful to help us with what to expect and look out for.
So if anyone has had experience of the cyclosporin drug which we will soon try….we’d be grateful to hear….and similarly we are happy to talk to anyone with questions relating to their experience.