My Daughter is in PICU in St Thomas hospital (London). She will be 7 months on 11-02-09. She developed muscle stiffness in her trunk aged 4 months and is dependent on a ventilator to breath for her as her muscles are so stiff. The stiffness is also effected her arms and legs. She has had 3 EMG that are all very unusual to the consultants and she is not reacting to any of the drugs. They are trying her on mexelitine now which is the last drug they think that they have to try, but are not sure if that will work because she's had no luck with the other drugs. They dont understand whats going on with her. Can anyone help please as im desprate. Thankyou