Looking for information!

[ed'smum]

Hello All
It is such a relief to finally be in touch with people who know about
this disease. My 12 month old son was diagnosed with AE 2 months ago
and fortunately has made a miracle recovery once he started the zinc
sulphate. I am incredibly grateful to the consultant dermatologist
who finally gave him the correct diagnosis but since then, we have not
been able to find anyone who knows anything about the disease and they
are not even sure he is on the right dosage of zinc. He weighs about
23lb and is on 0.5 ml of 10mg/mls soln twice a day. Does this sound
about right?
We live in the Manchester area and were refered to a paediatrician but
they had never come across the disease and have written to geneticists
to get some answers but my next appt is not until next March. Since
starting on the zinc in Sept , he has not had any further blood tests
to check his zinc levels. Is this normal?
I am also pregnant again and they are not sure if there are tests to
find out if the new baby will have it before waiting for it to
develop. Does anyone know about this?
Sorry for all the questions but I have felt abit isolated up to this
point!
Kind regards and I hope you and your children are all feeling well at
the moment.