Pain Sensors and ROHHAD

With ROHHAD the sensitivity to pain is affected. Most children have limited pain receptors although we know a few that do not have this.

When Haven was about 1 year old we began to notice that she never cried and never felt any pain when she would fall down or get hurt. But we didn't think much about it. Then when everything went downhill at age 2 I paid more attention to it.

Haven does not feel pain. She knows she should scream or say ouch or something when she should probably be hurt. But doesn't really feel pain - so I know when a doctor asks if something hurts she can't really tell.

One time Haven feel asleep while going potty (she randomly falls asleep in the middle of a sentence). All of the sudden there was a loud noise in the bathroom and some scrambling. Haven had fallen off the toilet and hit her head on the edge of the door. Leaving a large lump in the middle of her forehead with a crease down the center of it for hours from the door. Never once screamed or cried or even made a noise.

Earlier this week Haven was making fruit skewers and you guessed it, jammed a skewer in to her hand. All she says was "ouch" very calmly. But she had a skewer in her hand and it was bleeding. She was clearly not bothered by it half as much as we were. Now there is a bit of a hole in the center of her hand - we keep peroxide on it.

It is definitely clear to us that Haven could fracture a bone and never know it. So when she does say something hurts we listen.