Casey and Rob both got glowing comments from their doctor last week. He was so happy with their progress and loved that when he walked in the room, Casey looked up and said, “Hi Max!” (his first name! 🙂 ) I reminded her that she needs to call him Dr. Wiznitzer, but he laughed and said she could call him anything she wanted.
During their visit, we decided to try lowering Casey’s medications again. We made a huge jump over the last year in the amount she takes and are hoping she can continue to wean off of it as it is one that can increase her appetite. She doesn’t seem to have an opinion one way or the other, but when I told her Friday morning she only needed half of the pill, she looked at me and said “Not sick?” Honestly, that broke my heart – that she has been thinking she needs to take pills because she is sick.
So we had a short and sweet talk about how taking pills doesn’t always mean you are sick – that sometimes, pills help your brain work better. I told her the white pill helps keep her from getting upset. She couldn’t have cared less – she only wanted her yogurt and her iPad. But, at least I tried.
I knew the doctor would want to talk about reducing Rob’s, too. He’s been pretty stable for about two years, so it was time, but man – I’m worried. His anxiety can be ugly and painful and I’m honestly scared to death about lowering one of them. But – I don’t want him taking medications he doesn’t need anymore, so we’re going to try. Slowly. Right now, three of his medications can cause weight gain, so for his health, we need to lower them, if possible. Slowly. Can I repeat that?? Slowly!
Finding the right dose for medications is so hard. Most of the time, several medications need to be tried until you find the one that works without making the person feel “off.” And then increasing the level until you see they are helping. It’s a frustrating process.
And lowering them is just as hard. How do I know if Rob’s anxiety is caused by the lower dose or the full moon? Or the wind? Or something that happened that he can’t tell me about? How do I know if he is talking more because he’s trying to ease anxiety or just because it’s a beautiful day and he wants to sing? Is Casey getting irritable because of the lower dose or is she just having a bad day? (And – let’s not forget – autism or not, people have bad days!)
I know that I won’t see any difference in them, yet. It’s only been a few days and the medications need to work out of their systems, but I’m dreading the next few weeks. I’m tired just thinking about it. Should I be? No, of course not – all I have to do is give them their previous doses. The doctor was quite clear on that – I don’t even need to call him back. Just give it to them.
No – I’m tired knowing that I can never be sure why they are acting the way they do. I can’t be sure it’s the lower medication. I’m tired thinking of them not sleeping or of his anxiety or her getting irritated at the smallest thing. I’m tired before I need to be. That’s the thing with being a parent to someone who can’t easily communicate their needs – every thing I do is a guess. Sure, sometimes, now, they tell me when they are sick and need to see a doctor. But will they be able to tell me that they feel better with more of their medication? Probably not.
It will work out of their system so slowly, they may not even feel it – until the irritation and anxiety show up. And, if it does show up, I still need to wait a few days to see if it’s just a bad day or whether the meds need to be bumped back up. I think Casey will be okay with the lower dose – and it is much easier with her. Her irritation is obvious.
With Rob – it’s hard. He loves to vocally-stim. Which is what he does – louder – when his anxiety is high. It won’t be as easy to see. I’m tired just thinking about what the next several weeks might be like. I’m trying to ignore the negative and think positive! But, I’m also a realist – I’ve been through medication changes too many times to think they are always for the best. Fingers crossed!
What I want you to remember is that you know your child better than the doctor does. Listen to his/her advice, but make sure you share your thoughts! Do some research on the medications that are mentioned – ask your pharmacist questions, too. If you aren’t comfortable with a medicine, ask what other options there are. And if your doctor won’t listen to you, find another doctor. You have long journey ahead of you – you need a doctor you can trust and who is willing to listen to your thoughts. Write down your child’s behaviors when you start the medicine and keep a journal – that is the best way to know if the medication is working. Trust me – you won’t remember as much as you think you will.
Wish us luck. Maybe send a twelve pack of Coke and some dark chocolate our way. I may need it! 🙂