Hiya

you are in such a difficult situation with the drugs but you are doing the best thing for him by making sure he doesn't suffer. No one could think you are doing wrong. i think all any parent can do is try to give their child the best quality of life possible and sadly that sometimes means giving them drugs.

You do everything you can, and more. I know you research the drugs and treatments before you use them and i really admire that. I try to do that too - i want to know what i'm giving my boys before i give it and make sure i'm aware of side-effects and alternatives. After many doctors and consultants failing to work out what was wrong with my 2 boys, it took my dad reading an article about EGID that helped us work out what they had - we were quite shocked when Great Ormond Street said we were right!

the swine flu jab and tamiflu debate is a tricky one. i asked my GP last week about it and was unhelpfully told that as he 'knew nothing about my sons condition' he couldn't possibly advise me!!! I wasn't impressed and felt he could have at least asked me about EGID or tried to find out about it so he could advise me. I think a GP being un-interested in understanding a childs condition is pretty poor care.

I printed information sheets off FABED to send to the 2 GP's we try to see but it looks like i should have sent it to all 6 doctors!

I hope you are having an ok weekend,

Kx