“I do feel I’m quite stressed, I’m quite run down. I just feel
everything’s sort of on top of me at the moment ….. it’s just
constant, sort of appointments and phone calls and ordering her
medication and chasing it up and having to call this person and that
person and so on and so saying they don’t know, then try this, it just
goes round in circles sometimes, so I do get a bit frustrated and
angry” (mother 14)
This distress had led to sleep deprivation, stress, and feelings of
unhappiness, sadness, depression, and anxiety. Five of 10 parents
reporting mental health symptoms received a clinical diagnosis and/or
treatment for depression, anxiety. One parent reported that her physical
health was affected, she now received treatment for stress-induced high
blood pressure.
On the practical side the parents did anything they believed would keep
their child well such as being vigilant not to expose the child to
infections, behaving more cautiously around other people, assessing the
child’s health condition during the day as well as night, assessing the
risk level of each activity, ensuring the child attended medical
appointments, making sure the child had tissues to wipe their running
nose, and prolonged breastfeeding. They were on constant alert to make
sure the child did not develop a cold or became unwell. A few parents
even checked their child with a stethoscope or oximeter on a daily
basis, various parents regularly measured the child’s temperature, other
parents kept a diary/record, or closely monitored the child’s symptoms.
The parents mentioned a variety of emotions when child was unwell
including that they were worried, scared, anxious, upset, or sad.
As the following mother described some children with PCD can become
unwell very quickly: