Table 4 Representative quotes describing the impact of the irritability episodes on families

Emotional impact on families

As a parent, it is heart-wrenching to watch your child scream in such a way that he communicates that he is being tortured. And when nothing you do helps, you get depleted, depressed, and it brings on a challenge that no parent should ever have to endure. Family 1

The emotional toll is the worst. It is a mental torture to hear and see your child cry for so long. When he is having a good time period, you are constantly wondering (on pins and needles) when he will become upset. Family 9

It is so sad since I remember very few happy times. We have pictures of some happy times and I barely remember anything of them due to complete exhaustion and overwhelming stress…. I have mostly stopped dreaming and frequently just exist to keep [his] needs met. It really is not mentally healthy to raise a child with this condition. Family 6

Suffering in this way as a person can affect your relationships, your marriage, your friendships, and your parenting. You need to find a lot of mental and emotional support which can be hard to do because you feel like a broken record over and over expressing the feelings you are going through and being a voice for our son who is suffering more than any of us. You also need to lean on one's strong sense of faith to get through this kind of hardship. Family 1

Practical/logical challenges caused by extreme irritability episodes

These cycles of crabbiness have ruined many aspects of our lives. We never know what version of [our son] we would wake up to in the morning which created a lot of anxiety related to whether one of us would have to stay home from work. Financially we have had to give up a lot. My husband has never worked full time since [our son] was born since we need at least one of us to have a lot of flexibility to stay home with him. Family 6

Overall, it is so challenging to look after a child like [our son], as our brain is constantly working on something about him. It could be either about his medications or his doctor appointments or therapies or feeds or something like that. Family 10

Extreme negative impact on [our daughter] and our family. She can scream for 24 h or more. She is unable to participate in activities she likes and we can't take her out. Family 12

Impact on siblings and extended family members

It might mean that the other children go with one parent while the other parent takes care of [our son]. Or it means that care for the other kids is put on the back-burner while [he] is cared for. Family 4

It is so frustrating to see him like that. Everyone in the family gets upset when he gets irritable and starts to scream all day for few days. Family 10

Medical uncertainty and concern about the future

I'm afraid to try new medications as once [our son] had to undergo of resuscitation due to drug overdosing. When looking at all the medication he is having makes us so upset. We often think, what his future would look like if he is having a hard life when he is just 4 years. Specially when it happens continuously since birth it has been so difficult for me and my husband to plan things for the family. For the last 4 years and 4 months he has been admitted to the hospital more than 40 times. Family 10

We felt complete and utter helplessness. We had very limited support from the medical community because of their lack in understanding of what the true problem was, let alone their disbelief in what we described. It made us feel very alone and isolated. Family 1