hi vicki,
my son jason whom has apeced also has inflammation of the cornea in
both eyes, and severe dry eyes,
when he was just 14 months old i was told that the rash which he had
all over his body scarred his eyes.
at the time i was quit angry as i took my child to the hospital as i
was instructed to do so if the rash apeared near his mouth or eyes
and 'i was told that it was not accually in the eyelid' and sent
home. and after a few years of problems jasons doctor discovered
that he was very low in vitamin A.
Also i have read recently that inflamation of the cornea is another
part of apeced which i have yet to be told by a doctor was related.
And hi to Rosa,
I am sorry i can't tell you what to do, i can just tell you what i
have done, I like karen have told everyone close to my family and
friends and also jasons school. I feel that its nothing to be
ashamed off. and if i inform everyone who will listen then there is
more chance that when his adrenal gland fails then there will be an
adult close by to get him help. Jason looks quit well so people
sometimes give me funny looks when i fuss. But my sons sugar levels
drop and he has seizures and also can not see when we are out doors
and there is sun light. So i need help from others like class room
assiants in school and granparents etc...
Although know one seems to realise what exactly is wrong with him
and what apeced is, i try to explain away from his small ears so
that i am not making a fuss and he is not treated different.
The day he was diagnosed i went straight home and told my mum. She
sat and cried and i was about to go on my driving test, so i tried
to keep calm, when i later explained that i had, had my test she
realised that i was very upset and was trying to keep a brave face.
I personaly feel that its better to talk things through, my partner
will always listen and so will both my parents, but it is better to
to speak with people who know what you are going through. also i
think that sometimes the doctors originally put me off, saying that
there was nothing wrong with jason as i am a young mother, i had
jason at the age of 16 and i am at present 24. my persistants paid
off, as a mother always knows best,
Take care... and karen you are not alone, i also have 2 hospital
appointments today also for jason, so hope everything goes well