Med Rollercoaster

It’s been a busy and hectic few days. On Friday, I talked to Jake’s teachers, and then checked in with his psychiatrist. The doctor really feels that Jake’s pronounced tics were driven by high anxiety. The day that he experienced alarming tics at school was a day that: (a) both his homeroom and resource teacher were out of school, (b) another child in his class experienced high anger issues, resulting in a thrown desk in class, (c) a substitute lost utter control of the class, (d) Jake had spent the night in a new bed that he was afraid he was going to fall from.

After talking to the psychiatrist about what we and the teachers were seeing with Jake at school and at home, he suspects that Jake’s dose of Focelin XR was not high enough. We start low and ramp up as needed. As such, we are doubling his dose. He takes 10 mg, twice a day now. We will go see his psychiatrist on Friday, 2/22 to check in. We started the higher dose on Saturday. With the new dose, over the past two days, I have noticed less impulsive behavior, and less perseveration. I’m hopeful. I will check in with his teachers on Thursday to see how the first few days at school go.

Later on Friday, I took Tate for his tri-monthly check-up at his psychiatrist. He’d been on Vyvanse, 30 mg a day for about 12 months. Lately we’d been noticing less focus, more impulsivity, and unfortunately, more opposition and weepiness. One of the negative side-effects of Vyvanse is depression. The doctor tried to ask Tate, twice, if he was feeling sad. She tried to have him identify the emotion by using pictures, since he couldn’t answer her question. When she asked him to point to how he was feeling, he pushed the card away. Because we can’t be certain if he’s truly sad/depressed, or more frustrated because he’s struggling, we are going to try Focelin XR for a month. He’s at 5 mg, 2 times a day. We can call her back sooner if we are experiencing some significant issues…we should know in a few days whether or not the medication is working. He starts the new medication tomorrow.

Of course, because we are introducing a new medication, we have had a few days without medication. If I had any doubt that Tate’s meds were working, I got my answer. Yes…they were…at least a little bit. Oh. my. GOD. We have had 2 days of “Energizer-bunny Tate”. We haven’t seen this silly, out-of-control behavior in over a year…so I guess that is a good thing. I am nervous to see how he reacts to a new medication. I hope it’s an easy transition. I pray he does ok. I know he’s a little overwhelmed by his behavior…he is old enough and aware enough to know he can’t control some of the impulses..and yesterday was rough watching him struggle. He lost the battle, ending up on the couch with the weighted blanket completely covering him to try to relax himself. He was in bed early, and slept quite well, which indicates that he was completely exhausted.

This week is going to be a period of sit and wait. All I can do is…..buckle up, and sit down, because here we goooooooooooo…..

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Always something…

Sometimes, I forget that Jake has “special needs”. He is my helper. My rule-follower. Far too often I ask him to do a lot. A lot more than a kid his age should have to do. But, we both know that comes with the territory…Tate’s needs often take more of my attention and time. Jake seems to understand this. He doesn’t complain and doesn’t like to tell me when he’s feeling off, ill, or grumpy.

Jake has significant ADHD. It affects his life in many ways. Since we made the decision to medicate him at the end of August, we have seen improved focus and less anxiety over what comes next because he is better able to plan and follow his plans and coping mechanisms because he isn’t five steps behind. 

In October we started noticing that Jake was rolling his eyes…a tic. It wasn’t very often, but did occur now and then. I brought it up with the doctor, and he said that it could be dry eyes, which is common with the medication. We started giving Jake eye drops when he would roll his eyes in this tic-like fashion. It was infrequent.

In December, the eye tic started happening a bit more. And it got worse when Jake was more anxious. Like at family functions. Or when we dropped him and his brothers off at my in-laws for an overnight. Or when he had a test at school. 

Winter break started, and we only saw the eye roll when Jake was overtired and had too much tv time. Prior to medication, Jake would get a few tics now and then, but they were never consistent. They almost always occurred with stress, fatigue, and too much screen time.

Last week or two I noticed the eye roll tic more. Especially when Jake was anxious. I made a note to ask his teachers about it. He had a big schedule change with the addition of a reading club Tuesday and Thursday afternoons after school and a Lego social group on Saturday mornings. On Saturday nights he is doing a Lacrosse skills class. The eye roll tic would often pop up before going to his skills class…and he was doing it quite frequently at his Cub Scout Pinewood Derby on Friday.

This past weekend I was knocked out with a really bad cold. I was in bed for half the day on Sunday. The other half of the day I was trying to keep the kids occupied while Hubz assembled the new bunk beds. Because I felt like garbage, Jake had almost an entire day of tv. (Please do not send the authorities to my house…) The tic got bad.

He didn’t sleep well Sunday night. He was nervous on his new top bunk. He said he woke up a lot. He was up before 5 am. At 6 am he headed downstairs and watched some more tv. Thanks to an email from his teacher the night before, we knew that she was going to be out with the flu. Jake was nervous about the substitute.

Yesterday around 1:45 I received a call from the school nurse. Jake had been in OT and the OT was concerned. He kept rolling his eyes (the tic) and trying to crack his neck. He said his brain felt “crazy”. The nurse checked all of his vitals. They were fine. She checked his eyes, which were ok. She asked him questions to assess if he was confused. He was not. 

Our school social worker is familiar with seizures. She said she was sure it wasn’t a seizure…it didn’t seem like it. She felt that his tics were magnified…so I called the psychiatrist. He wasn’t in the office, so I left a message on the “it’s-urgent-but-not-life-threatening” voicemail. He called me back in about 15 minutes. 

We think Jake’s meds are exacerbating his tics. It is quite common. We are changing his meds. He needs to be off of the current med for 2 days before starting the new one. With the doctor’s ok, we will wean off the old meds this weekend and start the new meds on Monday. 

Jake is making such strides academically, socially, and with self-help skills. I hate for him to have a big setback. I was getting so confident in his progress. And now, this. On top of the really rough week we had with Tate last week. It’s just always something that puts me back in my place and makes me realize that we can never, ever have time off. We always have to be on and ready.