A family's story

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.

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Comments on: "Always something…" (8)

  1. I can understand your concern and the worry that comes back just as you finish that sigh of relief… There is always something that keeps us on our toes. I hope the medication changes help this issue for you. Sending ((hugs)) and understanding.

  2. Best of luck with this. We are really struggling with facial tics/habitual behaviors. Thought it was meds, took him completely off for a month and no change. Put him back on, and it comes and goes. It’s been really frequent lately and we’re just no sure how to address. Thinking of bringing in a private behavioral therapist just to work on this issue, but I’m also torn about how it makes Ryan feel that we nag at him all the time about this. It’s an issue that’s much bigger for us than it is for him right now. We’re also thinking of having it addressed in his social skills group, which is very much a safe place for Ryan, and hoping that hearing about it and discussing it with his peers might help. We think this is something he can control because he nearly stopped it entirely after one visit to a psychologist when the Dr. told Ryan it was a habit and completely up to him. Arrrggh! Hang in there.

    • Thanks, Neil. I am hopeful that the new meds will help. I will say, that now that he’s mindful of it, we have seen less of the pronounced tic, and it’s more subtle…just a slight eyeroll. We start the new meds Monday…

  3. Hopefully there isn’t any setback with the med switch. It does always seem to be something. Hang in there mama. {hugs}

  4. Ugh, I feel for you. We have been dealing with some setbacks as well (not due to meds). It always seems to be “something” right? Just when you think you have settled on something than *bam* it changes. I hope the new med will help out.

    • Thank you! I hope that you find some ways to help with the setbacks you are seeing too. They can be so frustrating..and somewhat disheartening. But we will get through it..as our kiddoes will, too.

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