We took Luke to his sleep doctor last week who advised us to immediately stop giving him Singulair as it was causing bad side effects – vomiting, diarrhea, increased irritability (that’s being nice), extreme head banging,…and the list goes on.

He advised us that the next step would be getting Luke’s adenoids removed.  We’re really torn on this, the sleep study picked up snoring but he was asleep for less than 2 hours before I ended the study.  His adenoids were “slightly enlarged” when the ENT looked at them through that terrible camera/tube.  The husband and I agreed that we need to seek out several professional opinions before putting our baby under anesthesia.  Sometimes I think his overnight issues are behavioral.  Sometimes sensory.  Sometimes biological.  Yes, I think he has sleep terrors that may be caused by a blocked airway, keeping in mind that his hypotonia also plays a part in making his airway floppy.  But what about the nights that it takes a hour and a half for him to fall asleep?  He kicks, hits, cries, bangs his head, falls back into the wall, a true tantrum.  This happens probably 3 times a week before bed.  The fun times are when the husband is at work and I’m home alone praying to who knows who that little sis doesn’t wake up.  Luke can really hurt himself, the way he throws himself around, so I can’t leave him alone when this is going on.

The sleep doctor says his “tantrums” are not tantrums but sleep terrors and are biological.  He’s said twice already that they are not behavioral.  We are concerned that Luke’s sensory issues aren’t being taken into account as much as they should.  Today we’re going to hear what the ENT says, and then consult the sleep doctor again, and our pediatrician.  Our big fear is that we put him through surgery and then there is no positive result.  

Yesterday I told the hubs that I had to leave at 5:30am because I had to take an early train.  Typically I drive to work and he stays home with the kids, and works nights.  When we have doctors appointments or private therapy sessions I take the train so that we can just meet up prior to the appointment and ride home together.  5:30am is terrible, but my neighbor that I ride to work with had to go in early.  Anyways, the response was “What do we have to do now?” I feel the same way and it’s only been 9 months since his diagnosis….