hi linda,
my sons name is jason and he was born a healthy baby. it was when he
was 14 months that Jasostarted having quite a few problems with his
health. He has low calcium, vitamin A, vitamin E and vitamin D. when
Jason was 14 months old he had a condition which was believed to at
the time to be Stevens Johnson syndrome which scared the cornea of
his eyes, leaving him with keratitis (which is inflammation of the
cornea in both eyes), The specialist Jason sees now believes his
problems was to do with his lack of vitamin A and at the end of
November he plans to access Jason under general anaesthetic as Jason
can not tolerate light enough for him to access the situation or to
find out which lens for glasses he needs. . Jason has to wear react
alight glasses prescribed by the eye specialist and a sun hat to
shade his eyes all the time while outdoors. Jason's eyes can be
sometimes itchy, burning, irritating, red and he suffers poor
vision. At home I have to keep my blinds closed in the morning and
tilted in the afternoon as the light hurts his eyes.
He has also been left with a very low immune system. He is always
prone to infection and has diahorrea or constipation most weeks,
when Jason gets a head cold he regularly ends up in the doctors or
A&E, he comes out in a rash, which doctors can't understand. They
think he becomes allergic to the virus he gets. He also has a dry
skin condition called keratosis pilaris, and this causes lots of
different problems when playing with paints dough etc, and he has to
apply creams all through the day and be careful what he washes with.
Jason attends hospital every couple of months and has general
anaesthetics often. On a few occasions he has had to get temporary
collagen plugs inserted into his eyelids. His condition also makes
him photosensitive. In march of the year Jason had a Hypocalcaemia
episode during a general anaesthetic and they couldn't wake him, he
was very lucky he didn't go into a coma and because of this reason
they are going to try and find a new method of treating him.
Jason also had a siezer due to a Hypocalcaemia episode in December
of last year and at present I check his blood sugar levels regularly
to try and prevent this from happening again, Jason's condition is
made up of three factors hypoparathyroidism, candidiasis and adrenal
failure, at present he has hypoparathyroidism and candidiasis and we
are waiting on his adrenal gland failing (this will happened before
he's a teenager) and he will develop diabetes.
Jason also has a genetic defect with his teeth, he has a condition
called genetic dentine inperfecto disorder, and this is some times
known as glass teeth. And due to this he has had to have 16 of his
teeth removed, and when he gets his new teeth they will all have to
be crowned in order to protect them, at present he has 4 baby teeth
and 3 new adult teeth, and he is due to be accessed again in the
start of november. he is at present the only child in n.ireland who
has apeced that we know off and his calcuim levels are unstable at
the moment, i hop that this sheds more light for yourself on his
condition, take care and email soon... kathy