Hope is the most powerful drug.
Right before each new intervention I ride this wave of hope; it gets me every time. I think to myself, "Maybe this is it! Maybe this time he will start it understand me and to interact with the world in a productive way." THen, hours (or sometimes minutes) before we try whetever diet, supplement, therapy or medication I fall into total despair. I convince myself nothing will change- I am destined to be housebound with an unmanageable child. I will lose my job because no one will be able to watch him for that 5-30 minute gap between when his bus drops him off and I get home because he is too difficult for someone else to watch. Without my job we will all lose out health insurance. We will be hit with medical bills that stretch our already strapped financial situation and we will lose the house. . . you see where my mind goes. Perhaps this is a defense mechanism. It prevents too stark a contrast between reality and my expectations.
I went through this rise and fall of hope right before starting our current plan. After spending Saturday morning fully depressed as I gave Sam his first dose, I am now cautiously hopeful. Adderall seemed to calm Sam down for a few hours in the morning each day so far. His vocal stims were reduced, his hand flapping was down and he was less frantic to get outside and start stimming with his straws and the deck boards (usually he starts yelling "TIDE, TIDE, TIDE" at the top of his lungs about 15 minutes after he gets out of bed). The effects were brief - about 3-4 hours- but noticable. Later in each afternoon we noticed some slight differences as well. Sam seemed just a bit more interactive. We saw lots of deliberate and direct smiles. Also, Sam came in from outside all on his own a few times to ask for "gickle" (chase and tickle). He will ask for that sometimes in the house or if we are all out together but this was Sam leaving his stimmy activity and coming in to tell us something interactive he wanted to do. I hope now that Sam is up to the full (but still lowest) dose the effects might last longer. I know some kids take a half dose at noon to help them through the afternoon. Before we look into that I want to be sure these effects are real and not some placebo effect.
As for sleep, we have not made much progress. Ever since his 3mg of melatonin stopped doing the trick, he has been up most of every other night starting around 2am. He is wired and unable to settle back to sleep. He often crashes again around 5 or 5:30, just in time for Maya to wake up. I try to let him sleep for an hour or two before getting him up for school. The neurologist said we can give a higher dose of Risperdal at night, try clonidine or increase melatonin (or perhaps some combination of those options). I prefer to increase melatonin for now since it is the more natural option. We will see how that works.
Today, Sam is at school and I am very curious to see what feedback I get from his teacher. I hope I have not deluded myself into seeing something that is not there.
**Update** News from school was not good. Sam was aggitated and emotional. Was it the med? Monday blues? We will see.
2 comments:
Our ped. told us to increase melatonin before trying clonidine... so far, 6mg up from 4.5mg and we double the dose if she is up. The doctor says anything up to 20mg is probably okay.
You are certainly not the only one who rides the wave of hope, it is so hard to crash -- but it does sound like you have reason to be hopeful with the Adderall! That's awesome he sought you out for tickles. The sleep just baffles me - what is it about the hours between 2 and 5 that so many of our kids are up? Maybe the Adderall just needs to build up in his system a little longer. Hoping it's so.
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