PRACTICAL LIFE (page
2)
THE EVERYDAY LIFE
The life of parents of a child affected of ichtyose is organized
by the needs and the care of the patient. This care can vary from one day to
another according to the climatic variations, temperature and hygroscopy, wind,
sun, but also according to the limestone rate of the water. To the external
elements, the health of the patient is added on whom the least cold
generates a deterioration of the influence of the
medicamentous pomades and baths. The enequency of the daily care is determined by the general
state of the patient. That thus requires a constant presence of a person
entitled to react quickly and effectively, because this general state can change
into a few moments. Two to five medicamentous baths per day are necessary.
Each bath is followed of an application of pomade. The care of the eyes and the
ears are added which require an attention even more constant, from their natural
delicacy amplified by the ichtyose.
The ears
It is necessary, in the case of the ears, to eliminate the squames present in
the auditory canal, with very often of the blood coagulated on the level of the
ear speculum and even in the conduit. The use of the cotton bud is well on
prohibited. An easy way of the parents of Athina : after having deposited 1 to 2
drops of a softener medicamentous liquid product skin, one manages
to withdraw the squames thus softened, using a fine bobby pin surrounded of a
small end of kleenex.
The eyes
The care of the eyes, cleaning and hydration, must be also
carried out several times per day to prevent the risks of detachment of retina.
In the lamellate case of an ichtyose of ”Arlequin” type, the skin is so drawn
that the child does not have any more eyelids. When he sleeps, the opened
eyes, one can manage to him in pomade of vitamin A.
The care of the scalp is done during the baths, after the application of
medicated oil, one takes off the thick squames using of a fine comb.
It is necessary to count approximately an hour and half by complete session of
care.
At Outside
As soon as it is a question of leaving the house, that
they are two minutes or more, to make shopping or to go in parents, it is
necessary to prepare and take along an emergency case … a true case in fact. New
underwear, antibacterial soap, surgras, oil of bath, hydrating cream,
physiological serum, eye lotion, vitamin A, etc. The price of the drugs and
para-pharmaceutical products makes difficult the possibility of having a double
of all makes which would make it possible to lay out of a case always ready for
the walk. Though it is, this case is essential, for the delicate skin of the
patient, as one already saw, requires a fast intervention.
A simple diarrhea causes, in the space of few minutes, a reddening with sharp of
the skin which crack letting itself appear bleedings.
It is then necessary to be able, urgently, to bath the child, disinfect
and rehydrate the skin, and that, at some place where one is.
Conclusion
All this care
is painful for the child, despite everything the patience of which it
can be able, and constraining for the parents who must show much
courage and plenty of love.
