02/03/2026
This little stinker of ours.
The happy little boy everyone sees, who puts a smile on so many faces and pulls at lots of heart strings.
This is how Jack is throughout the day. But at night time itās a very different scenario.
For a few months now, Jack has been having prolonged episodes of complete distress, high pitched shrill screaming where nothing calms him down.
We explored every single possibility relating to teething, bowels and seizure activity. We took him to hospital last week too.
There doesnāt appear to be anything acute or medical causing the distress, and after our third sleepless night in a row I finally reached breaking point today.
I spent many hours on the phone to his palliative care team and even had a visit from our Ty Hafan support worker. In addition to that, friends rallied around to make me tea and cheer me up.
After some long discussions and some of my own research, I found that children with Neurodevelopmental disorders can have episodes where the brain will fire out pain stimulus, even when there isnāt anything clinically wrong. This causes his episodes where he is extremely tense, thrashing and screaming the house down.
Iām glad we seem to have an answer, however the only way we can help him is by giving a very small dose of Midazolam (we use a higher dose for seizure rescue medication) which will hopefully settle him and allow us some much needed rest. This will be sorted in the next few days.
It breaks my heart though, this was the situation I wanted to avoid, as he is already medicated up to the eyeballs, but I realise we cannot carry on this way.
Life as medical parents, plus three other kids is exhausting. The lack of sleep has had a huge effect on the whole family.
Iām so glad I reached out for help today, and I was listened to and supported fully xx
