Actually Doc…

Gets tired in the late afternoon sometimes, but I think switching the timing of Intuniv and starting Vyvanse has helped with that.

Took Luke to the doc for a checkup since he has started Vyvanse (lisdexamfetamine). Notice the amfetamine. My babies are on amfetamines. This all seems soooo counterintuitive.  And even though it does help, it still scares me. Have I said that before? Anyway, I’m happy that our move has taken us back to Doctor Dave, my husband’s brother who is an awesome pediatrician. And it was a classic Luke interchange.

Doc: “So do you think these new pills are helping?”

Luke: “Well, the pills don’t stop my meltdowns, they just give me more power to stop my meltdowns. Like if my brain is a bomb about to go off, the pills let me hack in and give me a couple extra minutes to disarm the bomb.”

Doc: “So you’re doing better with the meltdowns?”

Luke: “Ya. I haven’t had one since the Pinewood Derby.”

Mom (had to clarify a little): “The Pinewood Derby was last night.”

And later:

Doc: “So do you know what the Chill Drill is?”

Luke: “No.”

Doc: “When you feel like you’re going to have a meltdown, you imagine that you’re a penguin standing on ice. Breathe in some cool air, imagine your head cooling down, your feet cooling down. You just chill.”

Luke: “Well actually, that is the exact opposite of what penguins do. They try to maintain body heat and they huddle together to keep warm and hold their eggs on their feet to keep the eggs warm. They even have blubber to help them stay warm.”

The nurse and I looked at each other and tried not to laugh. Doctor Dave, patient as ever, went along with some Antarctic discussion and a new glacier metaphor.

The good news is that Doctor Dave saw a marked change in Luke since our last visit. Dave said the last time we visited, Luke wouldn’t even engage, but this time he talked a lot, and they had a good exchange. Small triumph. Better—I didn’t say perfect—social skills.

So for the record, we’ve changed both Izzy and Luke’s medications again. Nothing huge, but we’ve increased dosages. They’ve gone from 25 mg to 37.5 mg of Zoloft, their anxiety med. I’m giving them a pill and a half, since I’m wary about jumping right up to a double dose. I know they’ve been taking these meds for a few years now, and I know the dosage often increases as they grow and gain weight, but I’m still cautious. Who knows if they’ll take these meds off the market in 20 years and say, “Oops, we just realized that those drugs are causing brain tumors.” That may seem paranoid to some people, but in my mind those kinds of things happen all the time. So the smallest dose that helps is my mantra.

We also increased Luke’s dose of Vyvanse from 5 mg to 10 mg. Still a negligible quantity, but Luke and stimulants can be a scary combination. He just metabolizes the drugs like gasoline on fire. I was worried that he wouldn’t sleep on the 10 mg dose, but he fell in to bed and off to dreamland no problem. I think taking the Intuniv at night, riding his bike to school, and playing baseball are all helping with that. Baseball is another story for another day…

One Giant Leap for Izzy

I can’t afford to not write about this. It’s a positive, a success, a giant leap for Izzy. And it might be short lived, so I better get it down while the glow of success is still warming our lives.

Here it is. Izzy liked dance class! And then she liked it the next week. And now she has liked it three weeks in a row. She even said, “Mom, do you want to see part of my jazz routine?” I tried not to gush too much and freak her out and scare her off, but I think I nearly sang out, “Yes, of course.” She promptly did a little dance in the family room, which didn’t look like the jazz dances I have otherwise watched, but was definitely a dance with moves all over the room. My husband and I looked at each other astounded and shared a secret smile and raised eyebrows. “That was great,” I told her and gave her a little hug. In my head I was saying, “That was amazing, astonishing, brilliant, triumphant.”

What was so great about it? Well, for starters, she asked me if she could do dance this year. I put her in dance two years ago, but she didn’t like it. She spent most of the class looking in the mirror, chewing her hair, or meandering along when she was supposed to be hopping or chassé-ing. So we did not go back for more last year. When she asked me to do dance this year, I was surprised. I said, “Let’s try one class and see how you like it.”

So we went to the first class, and I prepared myself mentally to not be embarrassed or phased by her strange or unruly behaviors or comments such as “That was boring,” which I knew might possibly be voiced in front of dance teachers, students, parents, and the rest of our little dance universe. I hadn’t prepared myself to watch my daughter enjoy herself, follow a good deal of the instructions, try dance positions and leaps, and talk with other girls. Wow! What was happening? It was a Vyvanse, growing up, choosing-what-to-do-for-herself miracle.

There were definitely classic Izzy moments that made me laugh: During free dance, she chose to climb the doorway with her feet on either side of the door jam, while the other little girls were doing pirouettes and plies. And she had a few moments when the teacher had to remind her to join the class or when she was mixing it up with other kids. But overall, she seemed like a pretty regular kid having fun at dance class. I was as surprised and delighted as if someone had just left a warm, caramel bread pudding on my doorstep.

After class, I asked how it was. “Good,” she said. Amazed. No “Boring,” “Dumb,” or “I want to go home”? We drove home and brought my friend’s daughter with us. (Of course my friend could just send her daughter solo to her first class and have her be brought home with someone else.) Izzy even said a few words to the neighbor girl. I couldn’t hear them, but wow, she was starting a conversation with another child. Unprecedented.

By the next week, my glee had been replaced with a good dose of reality. Sure she liked it last week, but when I told her to get ready this week, I would probably meet a wall of resistance. Surprise again. I asked her to get her dance clothes on and she complied (not without a reminder or two, but without a struggle). She carpooled with my friend and came home happy as a clam for the second time. As she changed out of her dance clothes, she asked me when her new ballet slippers would arrive. And then talking more to herself, she said, “Why am I jealous because those other girls have dance bags? I have this one still.” And she put her dance stuff in her old bag with a big smile. Wow again.

Okay, week three, surely she would be bored with dance by now. No she loved it, and as mentioned above, came home and performed in the family room. What thing or combination of things brought about this miracle? I will never know exactly, but it’s a direction I like.

Tipping the Ever-So-Sensitive Dopamine Scales

Well, even 5 mg of Vyvanse was too much for Luke. His teacher said he was “climbing up the walls.” Stimulants are just not the thing for him. I suppose we could try a 2.5 mg dose, but I’m not sure how that would work. To give him 5 mg, we have to open a capsule and rather unscientifically knife the powder into two little piles. Could we divide up the one capsule into 4 piles—give him a few grains of powder a day? Not sure.

The amazing news is that Isabelle’s teacher said Isabelle was able to focus, participate, and complete all her work. She said the difference between Izzy with and without the Vyvanse was night and day.  I was really excited to hear that, and I must admit, a little bewildered. It had not seemed like Izzy had done well on the Vyvanse before. But as I thought about it, I wondered if Luke’s horrible days on Vyvanse had affected Izzy negatively so that we thought she wasn’t doing well either. Maybe since Luke was so aggressive, hitting, yelling, and teasing on those days, Izzy was just reacting to him. I was glad I had asked the teacher’s for their input because I’m not sure I would have ever realized that Izzy was benefiting from Vyvanse. Things get complicated when you are trying to figure out the best meds for two kids at the same time.

So we gave Izzy 5 mg of Vyvanse for a couple of days, and I started to notice that at about 3:30 in the afternoon, she was getting wild—I would say wilder than without any meds at all. It seemed that her medication was running out in the early pm. So the next day I gave her a 10 mg dose to see if it would last longer. It wore off at about 3:30 just as the 5 mg dose had. My pediatrician told me that although Vyvanse is supposed to last 12 hours, some kids need another small dose of stimulant after school. So at 3:30 I gave her another half dose (5 mg) of Vyvanse. That was bad. She was a tyrant. She was completely irrational and emotional. I felt awful for her. The things I am putting this little girl through. I immediately realized that was too much medication for her but what can you do? I wanted to magically remove it from her little body, but that was probably impossible short of having her stomach pumped. So Izzy had a rough day and on into the night. She did not fall asleep until about 3 am.

The next day, I went back to the half dose, 5 mg. I thought she better have some meds. I didn’t want her to go from having lots of meds in her body to having none and having withdrawal symptoms. But she must have still had a lot in her body, and she was exhausted. This was her worst day yet, and we were spending it on the lake with all our cousins. She screamed at everyone and everything. When she was being towed on a tube behind the boat, she screamed at her dad for going too fast. She climbed back into the boat calling him a “stegosaurus with a walnut brain, a six-headed monster, a freak, and the worst boat driver ever.” I hope we can laugh at that one day, but everyone was just trying to be patient with her. By late afternoon, the meds seemed to have balanced out, and she was having “an awesome day” and said my sister was “amazing.” Lucky dad was good and unflappable. At the end of the day, she did proceed to climb to the top of a 30-foot tree by the side of the lake where she waved in the flimsy topmost branches. I was cleaning out the boat and my niece said, “Do you see where Izzy is?” My husband went to get her, and of course, like a cat, she could get up but not down and cried as she climbed down, half-terrified, to my husband’s coaxing. I took a deep breath and reminded myself, “The meds can help her, not magically change all her difficult behaviors.”

Important lessons: 1) When you are working out meds with two kids, remember that one child can influence the other. Try to separate them for a while or ask for help from teachers or others.

2) After talking about all this with my pediatrician, I now understand that giving your child a half dose of Vyvanse in the afternoon is not the same as giving your child a 4-hour tablet of Adderall in the afternoon. Vyvanse is a long-acting med, so it will last a long time no matter what amount you take. A small dose just means a smaller amount will be in your system for a long time. On the other hand, a 4-hour tablet is just what it says, a med designed to last only four hours, no matter what the dose.

Oh my poor children are guinea pigs, and I am a medical reject. I hope we get through this in one piece. I love them though--I hope that makes up for a lot.