Experience with Focalin XR?

[kristin0713]

Anyone have experience with this med for ADHD inattentive? 

[wendyroo]

1 minute ago, kristin0713 said:

Anyone have experience with this med for ADHD inattentive? 

I have four kids on it. What are you wondering about it.

[kristin0713]

1 hour ago, wendyroo said:

I have four kids on it. What are you wondering about it.

Can you tell me about any side effects and benefits? How old are your kids and when did they start? 
 

 

Edited February 4, 2022 by kristin0713

[wendyroo]

My kids have all started on regular (non-extended release) Focalin at age 5. It was helpful for all, and truly life-changing for two of the kids. 

For convenience we tried switching one of the kids to Focalin XR when he was 7, and it led to a lot of aggression. We went back to regular Focalin, but his psychiatrist says that is normally only a problem for a small minority of kids around the ages of 6-8 (and this is my kiddo who is prone to aggression, with ODD and many other mental health issues, so it is not too big of a surprise). We later tried that same child on XR when he was 10, and there were no issues.

For my kids, there are two main side effects. By far the most difficult to deal with is lose of appetite. For my two oldest boys, their bodies eventually acclimated to the Focalin and they gained back the weight they had lost...but this took 2ish years. My third son has to take a mild appetite stimulant (it's just an anti-histamine that has that effect) to keep his weight up. And my youngest, who started regular Focalin about 6 months ago, and switched to XR about two months ago, lost enough weight that we decreased her dose for the time being.

The second side effect is trouble getting to sleep. All of my kids take their XR dose at 6am, and take a booster dose of regular Focalin mid-afternoon. We had to experiment to find just the right time for that booster dose so that it helped them get through dinner, but did not make it hard for them to fall asleep.

Looking back, I have no regrets about our medication journey. (My kids are currently 6, 8, 10, and 12.) They make life so, so much easier and more enjoyable for everyone. 

My boys LOVE their Focalin.  It lets them think.  They can focus on activities that are important to them.  They can finish their school and chores quickly so they can have more play time.  They can make and keep friends.  They can function in fun group classes.  They can positively interact with the family as opposed to the constant stress/conflict/disappointment of their pre-medicated days. 

They're still the same kids, but now their non-neurotypical brain chemistry is not holding them hostage.  Before, a lot of their actions were being done to them.  They didn't want to be the annoying kids who were constantly calling out during class, but their impulsivity was controlling them.  Everyone, including myself, got frustrated with them, but mostly they were victims of how their brains were wired...or mis-wired.  Now they get to choose how to behave, because the medication has allowed their brain to slow down enough to pause and think and plan and see the connects between cause and effect.  At this point, they can feel the difference between medicated and unmedicated, and they choose medicated hands down.

[ShepCarlin]

My oldest started taking it in August. No side effects noted. He is on a low dose, 5mg. His doctor has been great about checking with him to see how it is working for him. What he has said about it is that now he not only knows he has work to do but is willing to do it. Where before he might acknowledge he had a lot of work to do but wouldn't sit down to focus and get it down. He only takes it on weekdays when he has class. I'm glad we got him on it. I was initially hesitant at first but husband had a good point...what was the reason for getting him tested for ADHD if we weren't going to give him the tools to help him with it? We'd already tried all the strategies for helping him with a schedule and giving him tips on how to focus and organize. He needed the extra help the Rx has given him. 

Truly, the only "issue" we've had is that he has a hard time remembering to take it! I just bought him a simple daily pill organizer so he can look at it to see if he remembered to take his pill in the morning. He's 17 now and going to college next year so I need him to establish a good system he can count on to remember to take his pill. 

[Starr]

1 hour ago, ShepCarlin said:

He's 17 now and going to college next year so I need him to establish a good system he can count on to remember to take his pill. 

I wish our ds had started medication before college. He's on it now in grad school but the doctor he sees isn't taking the time to find the best medication for him.

[Storygirl]

My son used it for years, and the only side effect for him was appetite suppression. He skips lunch but eats extra in the evenings. After a number of years, he switched to Concerta, because the Focalin was not quite lasting through the entire school day for him, and Concerta lasts longer.

With any ADHD medication, you just have to try it out, because what is awesome for one person may not work at all for another. If there are side effects that are too difficult to manage, or if it doesn't last long enough, or if it doesn't help enough.... just go back to the doctor and talk it out and ask to try something different. We've switched meds quite a few times, and that's okay. Some people do land on the right thing the first time. My daughter, for example, is on Concerta and has always only been on Concerta, but my son has tried multiple things.

[Rachel]

My 9 year old has been on it about a year, he’s ADHD inattentive and dyslexic. We started out only giving it to him on school days but now give it to him nearly daily. On the weekends we talk through what he has going on and give him the choice. If he has a basketball game he usually wants to take it, he doesn’t mind skipping it for Sunday school. He started at 10mg, went up to 20mg, and now back at 10. It’s made a huge difference in his schoolwork. It’s also been nice to be able to give him two step instructions and he can actually remember the second step. I didn’t realize how often I was prompting him to ”focus” when it just wasn’t possible for him despite him really wanting to. 
 

Appetite suppression has been a big deal. He hasn’t lost any weight but he has grown 3” and only gained a pound.  His doctor isn’t concerned about it, but as a mom I am mildly concerned. I started having him drink a protein shake with breakfast to try to get calories in him before the meds kick in. I have to remind him to eat a snack midday. He will think he’s not hungry, but will be grouchy, after eating something he is in a better mood. He usually eats OK for supper though.

The reason he went back down to 10mg is that on 20mg he would crash hard right around supper time about when it wore off. He would cry or be super emotional. Also, in the afternoon, once his schoolwork was done, he would often just sit on the couch doing nothing. He lost interest in drawing or playing. If I gave him the suggestion he would sort of half heartedly do the things he used to love.  At 10mg he can focus on school but isn’t a zombie the rest of the day. He sometimes still crashes when it wears off, but not as hard as he did on 20mg. 
 

I was hesitant to have him start meds but now that we have, I am so glad we did. 

Edited February 4, 2022 by Rachel