Sleep Study - Results

We met with the sleep disorders clinic yesterday and found that Max **surprise** wakes up a lot at night.   They tracked 139 awakenings throughout the night, in tracking what woke him up, he had 33 random limb movements and a few breathing episodes, but they ended up with 99 spontaneous awakenings through out the night that could not be explained.   This equaled 14 times an hour, which they were a little concerned with.  The doctor that we wanted to see is on maternity leave right now and I had a conversation with the fill in doctor, who doesn't have much experience prescribing medication to young kids. I feel that it is too complex to begin changing medications without someone more experienced on board. We also now have an experienced pediatric Psychiatrist on board to monitor any day time behaviour changes that might be from any side effects from the sleep meds.  We have begun conversations with our Boston Team, Seattle Oncology Team and Seattle Neuro Team, to get feedback on starting a medication at this point now that we have more data. You can pray for this transition it will be so tricky to throw in another medication while we are being so careful in our tapering. At least now we know that he is struggling and hopefully we can come up with something that will improve his quality of life.