A New Drug.

I'm in a kind of writing funk lately. Seems like I can't write for love nor money these days. I start to reel out a post or a journal entry or work on a story, and it just stares back at me, teasing me with those few words that never even have a chance to start. And then I just move onto something else, because there is no point when the words just don't want to come.

So, I'll begin with Kaeden. I am seeing a tiny bit of hope again surface. Although I do not like the means of this hope, it's still a little something to fill my heart up with a sense of maybe, which has been lost in this little word called autism over the past few years. On advice from our autism counselor, we returned to the hospital for a meeting with the psychaitrist. At least she was able to pull some strings and get us in before my already agenda-ized meeting with our regular psych in JUNE. Yeah, 4 months later to get an appointment. Waiting lists of 3+ years for services. Our pediatrician who knows kaeden, supports our family, decides it's time to take retirement. The only good doctor news lately is that the last time I went to our family doc for prescriptions, he wrote me 18 in place of the normal 4 or 5. I think he was getting tired of seeing my face on a weekly basis. Yeah, Kaeden's ritalin is a real pain in the butt. Each prescription must be written separately, on it's own form, and because it is a controlled substance, you are only allowed to have a minimal number at any one time. Cue Belgian government here. Yeah, stupid. For the docs it's a real pain, as each visit with us takes up an entire stash of their prescription books and a good 30 minutes writing time. Plus, their hands get tired. All that writing: Ritalin 10mg, Big box, hand signature. and they have no energy left to pick up their tools to help the next patient. Kaeden goes through one box in 3 days. If they don't want to see my mommy face with eyes that shock in PLEASE help me...I need the drugs...PLEASE...as I beg on hands and knees for one more little box to get us through the next few days. Yeah, he definitely needs his ritalin. It's the one drug we have given him in which I am 100% sure of the success.

Anyway, back to the hope thing. We're trying a new drug. Keeping all the old ones and adding a new in hopes of getting this kid of mine onto the right track, able to think and act instead of act and maybe think later. I don't like the medicine cabinet that has overtaken my kitchen cupboard. Boxes of this, that, and the other all line the shelves. And then, each day, I count out the pills and load them into my son's body, hoping they are doing their job, but never convinced of this fact. My son takes already 9 pills a day. 114 mg of medicine. Each for something else. Now add the new drug, Seroquell, and we're up to 10 pills and 139 mg. It seems a bit much to me. It seems as if there should be hope with just the 9 pills, the 114 mg. But it wasn't working.

Seroquel (http://en.wikipedia.org/wiki/Quetiapine), first taken on Saturday, brought out a few very angry episodes on Sunday. Nothing new, but I was aware of the fact that his anger started around 3pm and increased throughout the evening until he crashed completely Sunday night around 8:30. Monday, he awakened in perfectly happy spirits, completing all his chores with a smile on his (and my) face. In my mind I keep churning through all the possible reasons for this. Back to school after vacation. A good, long sleep for a change without his sleep issues depriving him of dream-time. Maybe it was just a good day. Or maybe, maybe, it's this new drug.

Today was not as positive as yesterday. But still, he was much more helpful, much more balanced, much more in control. And he was smiling and gave me hugs and kisses and his eyes shined with happiness. Last evening, again, he had difficulty from 5pm on. I could see the downhill progression of his attitude, his behavior, his control issue. And I know that we're probably going to increase the dosage today at his follow-up appointment. He seems to be successful until a certain point of the day, when it gets even worse as he struggles with the feeling of loss of control.

I'm not going to say, yet, that this drug is helpful. I need more long-term proof to make that decision. But, even though I don't like adding additional little mg's into his body, maybe this is finally going to be the one that works for him, for his body, for his combo ADHD and autism, which always seem to work against each other. I'm hopeful that something will give my son a chance to find a glimmer of peace, hope, success within himself. A little bit of self-control and self esteem. A little bit of understanding this confusing, stressful world. And maybe, just maybe, if this is one that helps my son, we can start to reduce the number of those other pills, quit filling his body with substances that are supposed to do something to help him, but can't quite make the cut. And I can stop reading the enclosed side-effect leaflets with a pit of worry in my stomach.

What is best? Giving him meds to control behavior issues, continually worrying what said drugs are doing to his body, or all of us dying a slow-death from stress and unhappiness? Neither seems the best option, but I can only hope, yeah, there's that word again, that we're making the right choice for our son and our family.


Tanya @ Teenautism said...

Tera, I am hoping right along with you, and sending love.

So this is blogging... said...

Please do keep us informed of how the new medication works...Hopefully (and you have to have hope or you have nothing) it will continue to be a success and Kaed will feel a bit more accomplished himself!