A family's story

Med Change Mayhem

A week and a half ago I took Tate to his psychiatrist for his routine check-up. From the way that he was acting during the appointment, which was at 4:00 pm on a Friday, it was clear that his meds had worn off–again. The doctor was trying to engage Tate in a brief exchange of pleasantries, and Tate was upside down, on the couch, scripting and asking when we could go home. She asked him how he was feeling. He giggled and said, “poop”. Yeah, it was awesome.

I explained to the doctor how even though the Focelin XR was supposed to give him 4 or 5 hours of focus, we were getting 3–on a good day. The Focelin worked well, but he was just blowing through it. Plus, the capsule was not the easiest thing to get into Tate. He often ended up chewing it, which I knew was blowing some of the efficacy of the medication. I expressed my concern about the school year, and asked if she had a higher dosage to give him.

Considering Tate’s current state and history, the doctor recommended a new medication. It’s the same “family” as the Focelin XR, but it is liquid and extended release, when, at a full dose, has shown to give 12 hours of improved focus. So, for Tate, we’ll probably get 6 or 7. But that would get him through his day. So, we walked out of the doctor’s office with a prescription for Quillivant XR.

I took it to the pharmacy, and was promptly told that their orders for narcotics, aka “controlled substances” *shudder* go out on Monday mornings. This would go out then. It would take 3-4 days. I got the call on Thursday night that his meds were in. Friday morning we started at the 2 ml dose that I was told to give him to start. That was awful. He was all over the place, and kept saying his head was not feeling good. He had none in his system by noon. But I wasn’t supposed to give him more on that first day. I was so incredibly exhausted, I could have cried.

On Saturday, I upped the dosage to 3 ml. He did MUCH better with that one, but was still not quite himself. Later that morning my in-laws came to take Tate, Jake, and Cole for the day. I gave my mother-in-law the heads’ up about the medication. They were taking the boys to the park to play, and that was probably the best thing that they could have done. It helped him stay organized and stay regulated through the afternoon, and he did just fine at night.

The dosage stayed the same yesterday. My mother-in-law gave it to him around 8 am. By 3:00 it was obvious that the medication had worn off. But, that is more “life” than his prior medication had given him. I haven’t noticed a crash, but his impulsive behaviors are through the roof when this medication wears off. He has to touch everything. Push every button. Flip every light switch. That description of the “energizer bunny”?? He embodied every inch of that. It made my head spin. He was so exhausted at night that it was hard for him to keep up with his brothers. (On a positive note, he did sleep until after 6 a.m. today.)

This morning I upped the dosage to 3.5 ml. He was very “on” this morning. I know that the medication is working, and he is definitely tolerating it. He hasn’t complained about his head or done anything to indicate otherwise. At just shy of 1 p.m., he is starting to be a little more impulsive and scattered. Tomorrow I’ll bump the dose to 4 ml.

This trial and error is hard on everyone. Tate struggles as his body tries to figure out the new medication and dosage. He struggles as the lower initial doses don’t give him the right support to get through the day without falling apart. His brothers struggle to cope with the impulsive and sometimes almost manic behavior that ensues as Tate tries to find his footing and balance on a new medication. Hubz and I struggle as we watch him wrestle with the behavior and the biology behind it. As we watch him figure try to cope. As we hope that a lower dose may be the answer…and realize that we will have to dial it up to the full one just to get him through the day.

We do this dance. We try to find the sweet spot where we medicate enough to help him function successfully, but not so much that it detracts from his personality. Tate is always going to be high energy. He will always have a brain that rapidly fires to and fro. We choose to medicate to give him the ability to be present in the current moment and take part in the action going on around him at present, rather than what *may* happen an hour, a day, a week in advance. We choose to medicate because we know how frustrated and discouraged he becomes when he’s not. It’s about giving him the chance to be a kid…to have friends, go to school, and play and engage with others. It’s not a crutch. It’s a tool. I just want to find the right one. For Tate.


Comments on: "Med Change Mayhem" (11)

  1. I can only empathize from the trial and error processes
    I, myself have gone through. And they were tough as an adult.
    Doing this process with a kiddo, I can only imagine.

    I’ve read your blog for a while now and just wanted to
    say how much I admire your strength and determination.
    If ever you have a “I Suck” day, just know that I think you rock ๐Ÿ™‚

  2. I feel you on this one. We’ve been there as have so many others. The medication dance is so frustrating. We’ve upped doses, lowered doses, switched meds, stopped giving it altogether. We were completely done with meds until something happened and … we weren’t. Wishing you luck that things settle in soon.

    • Thank you. I know this medication dance is awful…and for all involved. Hope things are settled at your house, too.

  3. {HUGS} Tate and B are so similar. I yearn to find a sweet spot too.

  4. You already know that we are so right there with you right now — right down to the high-energy and impulsive behavior. I wish there was some *perfect* way to help our kiddos slow down. *sigh* and really big (hugs) for you!

    • Thanks, Karla. Your post about LM is what got me thinking about writing this one. I really wish they could slow down..and I wish we knew the *perfect* way to get there. Hugs right back at ya!!

  5. The sweet spot – oh yes! With you here ((HUGS))

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