Focalin, Suspension, Help from the School District

New medication for both kids, so I’ve gotta keep track. It’s sort of unexpected that we changed medication. We have tried the kids on several things, and I felt that they were using what worked best. But then a little catalyst of change came up. In December, Luke was suspended for three days for hitting another boy in his class.

Got that call from the principal, “Mrs. Larson. There’s been an incident with Luke.” The first time I got that call, I was in tears. The second, I was really stressed. The third I just sighed and rolled my eyes. Kind of an "Oh boy, what now?" But it turned out to be worse than an eye roller.

So I met with the principal about the incident and got a lot more info. The kid had teased Luke and tattled on him. Luke had hit him--but he's no boxer. I worry more about his bark than his bite. It seemed that this meeting was really a "we don't know what to do with your kid" meeting. I realized that things were not going as well as I thought at school. Luke has a tracker that his teacher signs and sends home, and he was earning rewards almost every day. He did have some problems with other kids that the teacher had told me about, but things were definitely worse than I perceived. 

My husband and I met with the principal and vice principal again the next day. Things just seemed to get worse. They brought up the option of putting Luke in a Learning Center, which essentially means a smaller classroom for kids with behavior problems at a different school. We were shocked to hear that. DH about lost his mind and brought a law suit after that meeting.

The next day Luke, my husband, and I went to one meeting with the district “Safe Schools” administrator and another with the case management team. The people at the district were very understanding and helpful and reassuring that they wanted to help Luke and not kick him to the curb. But we did get the idea that they had gone a little overboard with Luke's suspension. They termed it an “assault.” And Luke had to sign a general behavior contract that I’d say is usually reserved for tough high school kids. It mentioned arson, theft, vandalism… Luke started to read it and said, “What’s sexting?” The administrator pushed the paper right up to Luke’s chest and said, “Just sign the bottom here.” Luke cuddled a stuffed dog in one hand and signed with the other.

So we were at one of those points of desperation where we felt like we’d do anything to help Luke and make the situation at school better. I asked our pediatrician Dr. Dave about trying different meds, and he suggested Focalin. We had tried it several years ago and decided against it since it made Luke sleepy but thought we’d try again with a super low dose. So we switched both Luke and Izzy and started with a very low 5 mg dose for Luke and 10 mg for Izzy. Izzy obviously needed more, and we gradually increased her dose to 20 mg. We then tried her on 27 mg of Concerta, which is also a methylphenidate, but she seemed to get a little over-the-top crazy on that. So we are sticking with 20 mg Focalin for both of them. I think it might be working better than the Vyvanse. But since this is all so subjective and mixed in with the emotions of a desperate mother and father, it is hard to know. We are also trying to figure out if they need a little short-acting, after-school dose.

More details to come on help from the school district, an in-class aid, school psychologist and special ed teacher changes, and finding an outside psychologist.

A great message for moms who are trying their best.

Farewell to Focalin

Hiking at Zion's National Park

We gave up on Focalin. In my opinion, it is either making things worse or it is not making a significant difference in them. To me, it is not worth it to treat my children with drugs if the benefits are negligible. And I feel like I gave it the old college try. We had them on 5 mg for one week and that was not fun. Then I moved them up to 10 mg and that was no better. They started waking up in the middle of the night. And for them, it seems like lack of sleep compounds horrible behavior exponentially.

But we kept on keeping on, and I gave them 10 mg of Focalin in the morning and 3 mg of melatonin at night hoping that it would help them sleep. They didn’t wake at night, but they didn’t seem to sleep deeply. I would check on them before I went to bed, and when I would brush hair off Izzy’s face or straighten Luke’s blanket, they would wake up and grumble, maybe sit up or open their eyes or roll over. Usually, they sleep soundly, even when I re-tuck them in or check on them. Usually there’s nothing but sweet, sleepy breathing.

So we went back down to 5 mg for another week, and I gave them melatonin at night. Still no noticeable improvements. So, we’re done. I have kept them on Intuniv the whole time, and that has made me wonder if perhaps the Intuniv is no longer working. Or maybe the Intuniv doesn’t work well with the stimulants? I don’t know. One thing that doesn’t really add up is that the Intuniv is supposed to control their emotional difficulties/outbursts, but that is the biggest problem they seem to have. I think the emotional outbursts are toned down by the Intuniv, but definitely not completely controlled. They are still a big problem—our biggest problem (and our even-keeled Wyatt seems be adopting their behaviors and crying and yelling more often). Added to that, the uncontrolled emotions seem to get worse when they are taking stimulants.  At this point, I hardly care that they forget their flip flops at the swimming pool. I can deal with that. It’s the screaming, complaining, lack of compliance, fighting, crying, and tantrums that are overrunning our lives. I just hope for some peace and serenity for them and our family. Serenity now!!

            One good thing. They like the job chart. (myjobchart.com) They are getting chores done and getting ready without too much hand holding, and they are very excited to choose their rewards. So it is working for specific tasks. But they can also earn points for behavior—not yelling, not teasing, etc. They have yet to earn points for good behavior, so once again, we will have to modify that and emphasize the importance of good behavior. 

We Need Tranquilizers, Not Stimulants

So sweet, funny, fun, and creative most of the time but inflexible and insatiable some of the time.

I haven’t written for a while because all I want to say is “aaaaaaaaah” again. We’re trying Focalin, and I don’t think it’s working for either of my kids. There seems to be a lot of screaming and whining these days. Loud screaming, sent-to-the-room-to-scream screaming. And teasing and fighting and poking and pushing and wrestling and horseplay ending in tears. I don’t think this can be caused solely by the transition from school to summer.

We started on a very low dose, half a 5 mg capsule, and for about a week we’ve had worse than average behavior. Two days ago we moved up to one pill a day to see if that worked better. That seems to have made Luke wake up at 4:30 am. So the lack of sleep did not help today. Falling on the floor whining at any request—to get a chore done, to get clothes on, even to come for lunch. Oh, it is so exhausting for me, and it seems exhausting for him too. Izzy is going from anxious family policewoman to constant Gestapo girl. She is stressed about every situation.

How is it that stimulants are not working for either of my kids? I’ve read that stimulants do not work for 20% of people with ADHD, but it seems strange that they have not worked for either of them, especially since they have four cousins who do well on stimulants. Our psychiatrist feels that their anxiety comes from their problems dealing with ADHD symptoms, but I’m starting to wonder if anxiety is their primary problem. Maybe we should try meds for anxiety? I don’t know, so we’ll just keep trying.

We are also working on a new reward program. It is all on the computer (and it is free). So far they like it. Izzy said it was fun just because they are allowed to log on to my laptop. It is a little complicated to set it up, but once it is set up it’s great. You set up chores, give each chore a point value, and then set up rewards that they can earn with their points. Chores and rewards are already programmed in or you can create your own. Check out myjobchart.com if you are interested. I’ll tell you how it goes.

New Assignments and Hanging Out with Cousins

This sweet looking boy is the perp.

Aaaaaaaaaaaahh. That’s how I feel. I knew the magic would end when we were supposed to implement our new “plans” and the kids did not magically become un-impulsive, un-explosive, un-screamy, un-cry-ey, un-losing stuff, and all sorts of other things for which words don’t really exist except in my brain.

I have three main assignments to work on to begin with. One, add stimulants to Luke and Isabelle’s meds. Two, find a counselor outside the school who will work with all of us, family counseling, parent counseling, child counseling. Three, set up a rewards and “mild discipline” program at home and work on behaviors one at a time.

So for one, we are adding Focalin to their meds. (Both are already on Intuniv.) We are trying them on a super low dose since they have not done well on any other stimulants. Each is taking half a 5 mg capsule. We open the capsule and give them each a few of the tiny little “balls” inside, which apparently taste really “yucky.”  Day 1 of Focalin and Luke was tears, tears, tears and Izzy was talk, talk, talk. Day 2, Izzy seemed a little lethargic and Luke seemed emotional. They both seemed to eat and sleep okay.

We were away at Grandma and Grandpa’s and then my sister’s last week. They had a great time but stayed up late and ate junky food. They just don’t function well when their lives shift like that. They played well with their cousins, which made me so happy. At least they have friends in their cousins. One incident though, and it was a doozy.  Luke and his cousin Max were fighting over a big beach ball. Max gave Luke a hip check, and though he’s younger, he’s much bigger. Luke went flying. His little rage thermometer raced into the red. You could almost see the steam coming out of his ears. He got up and swung hard at Max, hit him in the face, and gave him a bloody nose. So bloody my sister was ready to faint. I felt horrible. Luke always manages to do something highly noticeable that hurts someone else or draws negative attention. It’s impossible for this kid to fly under the radar. In a way it's good because he's sort of innocent. He's not trying to hide his bad behaviors, he just lets fly. At least the boys both apologized and forgave each other. I think Luke understood the gravity of his actions. He suggested that he shouldn’t have screen time for five weeks! We’ll see if I can survive that.

So we began the Focalin just after getting home from this week away. It’s always hard to know if their symptoms are exacerbated by circumstances like lack of sleep, poor eating, stress, or transitions, or if the drugs are having the opposite of the intended effect. But I think we will be able to keep them on this for at least a couple of weeks to see if there is any real change--improvement I hope. I’ll report later on my other “assignments.”