Haematologica 2000;85:supplement to no. 10 - Supplements ...

82
B. Gargallo
emotional consequences on the child caused by
such frequent infusions and the relationship
with the parent who actually administered these
infusions. Will his relationship with that parent
change Will he no longer trust his parents, the
people who more than anyone else should protect
him from harm and pain The main practical
worry is that of venous access. Other preoccupations
concern the ordering and storing of
factor and meeting the needs of the other members
of the family. Extended family reactions, to
the parents’ decision of their child being put on
an immune tolerance protocol, may influence
the way parents feel about their decision. If the
reasoning behind the decision is clearly
explained, then the other family members can
accept this treatment more easily.
Immune tolerance needs adequate venous
access for the frequent factor administrations.
The decision to use an implanted venous access
device or infuse through peripheral veins is a very
difficult one for parents. Peripheral infusions in
immune tolerance are a possibile but not very
popular option. The commitment of the Center
staff in instructing the parents on venipuncture
technique, the use of a local anesthetic, play
therapy and the very young age of the child were
all variables that made peripheral home infusions
in a one and a half year old on immune tolerance
possibile. Parents can learn to administer
factor themselves even when the child is very
young; the learning process should be gradual
and parents not forced to try until they are
ready. Constant emotional and practical support
given by the hospital during the first period
of home infusion is very important. The question
of how many veins one can use in a small child
has no definite answer. But in our case the
answer was this: that many that we were willing
to search for.
Infusions in a young child are best given in a
calm environment, in the same place and roughly
at the same time.
Immune tolerance can be extremely stressful
for the whole family; moods would change easily
with bad infusion days during the first part of
the learning process and the constant thought
that my son would not achieve tolerance was
always on my mind. One particular thing that
made me sad and angry at the same time was
the medical personnel in general and others
repeatedly telling me that my child would suffer
less with a Port. How could they know Parents
already have to take very painful decisions for
their child’s health; they absolutely do not need
totally useless comments like the one above.
The siblings of the child on immune tolerance
need a lot of attention and reassurance. They
too are very worried about their brother’s health
even though they may not say so. A mother who
infuses her child so frequently establishes a very
deep relationship with her son.
Immune tolerance has proven to be a difficult
but extremely useful stepping stone towards subsequent
prophylactic treatment.
DISCUSSION 11 Immunetolerance: the parents
perspective
Gargallo B, (Rome)
BERNTORP: In our country, which is very
small in terms of its population, we have developed
a network for families who have children
with an inhibitor and I think this kind of network
is very much appreciated among the parents.
They meet together with the professionals
at least once a year and they also meet without
them. I saw that you are similar in that you have
a contact family but I wonder if there is a network
for families with children with an inhibitor
in other countries because I think this is a major
advantage in handling the psycho-social problems.
GARGALLO: I agree with you but unfortunately
there isn’t this kind of network in Italy. I
think such a network is very useful. It would be
a very good idea to implement such a network
in Italy.
Haematologica vol. 85(supplement to n. 10):October 2000