Hi Lisa and Nancy ,and thank you very much for your replay.I will try to contact a dr AADC specialist in Greece,but first of all we have to find a neuro who is interested in neurotramitters disorders in Italy.Today my daughter had a neuro consultation and dr told that is almost surely she has a genetic form of dystonia with hypotonia ,fluctuacting muscle tone ,oculogyric crisis,autonomic problems etc.I noticed that she feels better now when she starts to take drugs which improve seretonin and nerodrenaline ,and Gaba .she tried L-dopa but she had dystonic atack after taking it ,so maybe she has too much L-dopa and she is deficient of dopamine ...who knows.
We try a lot of drugs and I think that if my daughter has similar syndrome to your children ,we can share our experience that is interesting in some points.
I will phone Lisa,but Im not sure if my english is good enought for conversation:)
Can I be a member of AADC forum?it would be for me very interesting ,as I don't know anybody with problems of neurotransmitter disease ,and we feel so alone.How can I register on this board?
and what about an italian family with AADc I would be very happy to talk about symptoms and italian experience of AADC.
take care
Dana e Katerina