Anyone's children on Ketotifin

[taniashort]

Hi
my child's london specialist (Royal London - NHS) has had Christopher on Ketotifin - an immune system reaction repressant - for four years now. We took him off it and he was in analphylatich shock within a month. We have now put him back on the Ketotifin, but (here's the thing) having moved to Bucks, they don't use Ketotifin and don't want to support it. Their reason being they don't understand the long-term effects: anyone have any experience/ ideas here?
in hope...
Tania

[catesmum]

Our dd2 was on Ketotifin for 6 months (GOSH prescribed it). She was only put it on it because she had a terrible reaction to Sulfzalazine (rushed into hospital with suspected kidney failure). She's just come off it with no problems or changes in sumptoms - so they think that it wasn't doing anything anyway! But, this was at our request as we were getting really worried about her. She didn't grow a jot in those 6 months and was really really lethargic. Her local paediatrician consultant wasn't happy about her being on it...but she wasn't being treated for anaphylatic responses. This doesn't help does it...btu our experience with local hospitals and GPs is that if a specialist hospital prescribes something, then they just go with it..it might be worth phoning your London consultant and ask for a letter etc (bear in mind it might be a cost thing as well...)