any children with dystonia on here?

[trace2]

my dd had a funny episode last week and been told she may have dystonia so looking in to it till we see neuro

as in at this moment ? ok but in general still the same she as so many things wrong or going wrong which we are told unusual in a child, like two weeks ago rushed in bleeding from her bun for 4 days in a row, the movements disorders the seizures, we keep thinking what next ? last friday she did theses weird , at 9 30 pm her body twisted in all different ways she screamed , lasted 50 seconds then floppy agaon every 10 to 30 mins it kept on happing we tried to wake her but couldnt this carried on till 6 13 am we know we should have taken her to hospital or videoed it but we are so fed up with them not knowing i think we have given up on them,

one of the girls in dd's class has it,(know that doesn't help)

no not getting any answers at all she as an other mir on wed next week plus some more tests booked so will see.

ds has purely dystonic cp and a crossed ATNR so can get quite twisty at times, here is a wee video of him having a dystonic spasm, this was taken about two years ago and was fixed by increasing his sinemet (a parkinsons drug for the elderly that they also use on children with dystonic cp)

thank you for showing me they do do similar only she only does them while asleep and she twists more the only way i can explain is she twists like you ringing a cloth out. they did try l dopa once but it didnt work.