We have been super busy in the Williams household lately. Many of you commented on my last blog entry about being in the same boat and even trying Intuniv yourselves, so today I want to update our experience with this new medication and a few other brief things happening in our world.
We weaned down on Concerta to none and up on Intuniv to 2 mg. We had one day with Intuniv alone at 1 mg and it obviously wasn’t going to work. He was out of control, tattooing himself up his legs with ink pens during school, severe lack of respect, etc. So we bumped on up to 2 mg Intuniv the second day off Concerta. That was worse.
He sat in school and drew pictures of himself crying instead of doing his work. He back-talked his teacher, which she said never happened before. He refused anything and everything he was asked to do. He knew he was out of control and he was very unhappy about it.
We had psych-therapy that afternoon. As we always do, we went in and sat down and she began by asking how everything is going. Luke and I both told her it was just horrible. Luke said, “The new medicine is not helping, not one bit; I have lots of bad behavior.” That entire day was so heartbreaking, even for him.
I made the decision to go ahead and add back in the 36mg of Concerta the next morning. As we were tapering off I had noticed the 36mg Concerta with the 1mg Intuniv seemed to work pretty well. I called the pediatrician to confirm that was okay (although I knew it was because we had used the combination, as prescribed by him, when we were tapering off). We received his blessing. Luke has been on 36mg of Concerta and 2 mg of Intuniv for 5 days now.
He had a meds check-up with the pediatrician yesterday. As I was really thinking through the last several days to make a conclusion about this cocktail, I decided it was working pretty well. I had a little concern the 2 mg of Intuniv was a bit too much with the Concerta, but I knew it hadn’t been long enough to really decide that yet. But, no sooner than Luke and I discussed how we both felt the medication was good as we entered the doctor’s office, his behavior began to fall apart. He was mean to me and down on himself. He went from being happy and kind-of carefree one minute to being angry the next to being upset with himself and his feelings. This is not anything we’ve experienced outside of taking meds, ever, but we have seen it when taking meds he couldn’t tolerate.
I am going to give it another day or two just to be sure. But if these erratic mood shifts continue, I will ask for the 1mg Intuniv instead of the 2mg and pull back on it.
I had a conference with Luke’s teacher Friday afternoon to discuss all the items the psych-therapist has suggested we implement in the classroom to help Luke.
He is down to one desk now. The second desk was just an excuse to get away from cleaning and maintaining the first desk. Then the second desk was overrun too and he couldn’t get anything done. I took every single thing out of both desks after our conference and took them home to organize. I found papers from the beginning of the school year and dozens of drawings (likely done instead of his work). I left all the textbooks and workbooks and his teacher took the 2 extra reading textbooks and the extra math workbook.
Over the weekend I organized everything into one large binder. This is my new system to try. If every single thing he has goes in that one binder, maybe he can be more organized and I will get the papers, etc. I am supposed to see (I found the school newsletter from Nov in his desk too). We have two clear zipper pouches for writing and coloring implements, and tabbed divider folders for: spelling, writing, math, papers that must return to school, and papers to keep at home. There’s also a large pocket on the inside cover of the binder where he keeps blank notebook paper. Yesterday was the first day but it went well so far. I know his teacher helped him but that’s exactly what he needs until it becomes habit for him.
Luke also now must be required to keep his desk completely cleaned off at all times. He should be reminded to only have the papers, books, and pencil, etc he is using at that exact moment. If he’s not actively using something, it should be in his desk (textbooks) and/or in his binder (papers, pencils, etc). He has enough problems with handwriting and focusing on a task in general without having extra things on his desk to make everything more difficult.
Hopefully a more orderly space and a system will minimize chaos in his brain and help all around.
The kids started swim lessons a couple weeks ago. During the first lesson Luke swam with the teacher holding him at first but exited the pool and refused to participate any more once it was time to jump in (even tough she promised she would hold his hand and he wouldn’t go under). This, of course, stems from an incident he had during swimming lessons last summer in the same pool with the same instructor (she told him to practice floating on his back by the wall while she went down the pool a bit to help the next student jump in and swim to the wall but he went under and then couldn’t get back to the wall as the depth is a few inches over his head — he felt like he was drowning and is now petrified.).
Last week class was canceled due to weather-related road conditions. Last night, Luke never got in the pool. He lectured me the entire time about how he doesn’t need to go in water over his head and he’ll be just fine (this pool is a college pool and the shortest depth is 4 feet — the top of his head). But about 5 minutes from the end of the lesson, too late, he decided he wanted to participate. Then he whined and cried the rest of the night about how he should have participated and how he can’t do anything other kids can do. He was very hard on himself. Granted, 6 pm is about the time meds are wearing off and probably the worst time to be trying to get him to overcome fears. But this is the only thing available during the winter months.
He says he will join the class again next week. We’ll see.
They started the Friday afternoon art program last week as well. They had a wonderful time although Luke was crying when we got there and said no one would play with him. The teacher said he played with the others just fine until the last few minutes. Once we left we went out to eat and he fell asleep on my lap at the dinner table and could barely wake up to eat. That was the first day on the higher dose of Intuniv and he was having a hard time adjusting. I know he is going to have a great time at art this week. There were a couple boys a bit older than him that I did notice were “punks,” for lack of a better description. They were making fun of each other and laughing and not following the teacher’s instructions and laughing. I know she won’t let them pick on him though.
So that’s our last week and a half or so in a nutshell. We will continue with current dosages for a few more days and back down on the Intuniv if his mood doesn’t improve. To be his champion and continue forward is all we can do.