Last Friday, exactly a week after his psych appointment, I got a call from the Doctor herself. Jordan's blood work came back. Unfortunately, it showed that one of his medication levels was too high. Of course, it was the medication she was going to increase. Yep. You guessed it. We had to decrease it. The last time we tried to lower the dosage, all hell broke loose. There is really no other way to say it. So, starting Saturday morning, we decreased his dosage by 50 mg. Maybe its just me, because I know there was a significant change, and I know what to look for, but good grief...he has been unbearable! He is now miserable 99.9% of the time, which makes me miserable 100% of the time. We have been able to catch him before the self injurious behavior kick in, but he has started punching the walls again. His moods are cycling uncontrollably, despite being on a mood stabilizer. During a tantrum, he will scream, kick, punch, shake, and grind his teeth. After that comes the tears. A sobbing, ugly cry. And after that comes the smiles. As angry as I get because he behaves this way, it breaks my heart that I can't fix it and I don't know why he does it. Many people with autism have hypersensitive senses, so I always though it was the sound of Brett's voice that started these episodes. But them I realized- when Brett goes to his safe place and his voice is completely gone, shouldn't the behavior stop? And Jordan has also started getting irritable when Doug and I talk. Uh, hell no. Not letting that fly. I don't care how big he is.
Wednesday, he and I will travel to Fairhill Sleep Center in Cleveland Clinic for an overnight sleep study. We will FINALLY find out what is going on while he's sleeping (or supposed to be). They'll check how much sleep he's getting, if and how much REM sleep he's getting, how many times he wakes and for how long, restless leg syndrome, and probably other stuff that I'm sure I've forgotten. I'm estimating that he gets about 10 hours each night, and it takes me at least an hour to get him awake and downstairs every morning. I start at 8:30 and am lucky to see him by 9:30. He has even started dozing off during our evening movie. Jordan hasn't taken a nap in 18 years... I was informed that after the test, they'll be waking him around 6:00. And they want me to take him home with me after that? Are they nuts?!?!?! It will take him 4 days to recover from that. Please, let him fall asleep in the car. Please, please, please!! And if we don't get any answers from this test, you will all hear me scream.
On Friday, we'll go back to his psychiatrist to discuss our options. I certainly hope she has some good ideas, because I can't stand to see him this way. I am no longer a religious person for many reasons, but if you are, could you say an extra one for Jordan? He could really use it right now.
Brett has been doing an amazing job heading to his safe place when Jordan has a meltdown. He has even told me once that he was having a hard time and needed to go to his safe place. I know it will be a totally different story once school starts again, but I need to take this day by day. He's been through so much, that any progress is measurable. Now, if we could just work on the rotten teenage tone he takes when he speaks to us...
I took the boys to the grocery store today, which is never fun. I've found that if Jordan has his own list of preferred foods to shop for, it goes much smoother. Brett had a couple of things he 'needed' too. Our lists were just about finished as we walked by the candy aisle. Brett stopped us, and said "Mom, don't you think we should get more M&M's? I've been out for a long time." How can you argue with that?
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