This is what I have had on and off for the last few days. Jax is screaming when he is awake and sleeping (he’s asleep in this video) I just wish my baby could get a break. Since his PEG operation we still have sickness and diarrhoea daily. Now he is screaming and sweating buckets..
(n.b. the white around his mouth is toothpaste he started having a episode during cleaning so I stopped.)
Also he is wrapped tight in the thinnest material scarf I have. I have to do this if he is not wrapped his neurological issues take over and he jitters and shakes which brings on apneoas etc etc.)

Please share his story someone somewhere MUST know something about this. We are desperate 🙁 xx