“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: