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  #1  
Old 02-20-2012, 10:47 PM
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Focalin XR

The neurologist started ds 8 on Focalin XR 20mg for ADHD related to his FASD.

For one GLORIOUS week this medication was the magic bullet we had been looking for to help this child and us survive each other. Our home decompressed and I was actually genuinely liking this child. Life was good.

And then...just as miraculously as it worked...it stopped working. He just woke up on like day 8 or 9, took his pill and acted just like his old self without the med. What gives???

Anyone else experience this with Focalin XR? I have a call in to the doctor, but of course he's on vacation this week.

In case it matters, he's also on Intuniv 2 mg at night, which also started out seeming like it was going to help, but now I think I might as well be giving him tic tacs.

Thoughts?
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  #2  
Old 02-21-2012, 05:57 AM
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Sounds like you need to talk to his psych again. The dosages could be wrong or you may need to try another med. Sometimes it takes multiple tries to get the right combo for our kids. Took us 3 months to find the latest combo of meds for our son.
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Old 02-21-2012, 11:05 AM
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could be the wrong dosage or just the wrong med.

Intuniv is actually what our p-doc prescribed for Bubba to help manage his tics. he had them prior to taking the Focalyn, so we knew that could be an issue. in general, it's the ADHD stimulant drugs that tend to cause the tics.

for my son, when the tics break through, it's because it's time to change meds or lower the dose. paradoxically, sometimes raising it helps. go figure. for Bubba, it's always a balancing act.

without anything at all, he tics like a clock--noises, winking/blinking/grimacing, stuttering, a huffing of breath, rocking, lip licking, and head shaking. i've counted over 30 iterations in the time it takes him to say "my name is Bubba." when he's on Focalyn alone, we are a twitchy mess. add the Intuniv and it generally calms down. right now i'm seeing all kinds of breakthrough. it's time to change again.

Focalyn has worked for him for about 3 years. before that it was Methalyn. the tics were outrageous, even with the Intuniv. like a pp said, it's a tinkering process. when Bubba first went on, the doc had him on a transition schedule to incrementally increase his dose until we found the minimum that worked. it took 3 or 4 weeks to bring him up to his therapeutic level.

hope you find the answers your child needs.
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Old 02-21-2012, 06:29 PM
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It's a puzzle. Every kid is different. What works for one kid doesn't for another. And as you have found, doesn't always work. We seem to change every couple of years. My son doesn't do well on methyphendate, but does well on amphetemines. Intuniv had no effect whatsoever, and I know others that love it.

I liked him on Strattera, school did not. I got a call from someone everyday - classroom teacher, social worker, even the music teacher!

It has been difficult, one med will calm his body, not his mind, another the opposite. Getting both calm has been difficult.

He is back on Strattera in combination with Adderall and risperdal. And he is doing much, much better.
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Old 02-21-2012, 07:50 PM
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We have one on Focalin XR, one on Metadate CD 20 mg and one on Procentra . The one on Focalin XR also takes a follow up dose of Dexmethylph 2.5mg at lunchtime. If "E" does not take that it wears off too soon. Good luck on getting the meds right, it really makes a difference.
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Old 02-24-2012, 09:00 PM
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I don't know anything about your situation, but are you sure he actually took the medicine? Could he have put it in his mouth, not swallowed it and spit it out later?
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  #7  
Old 02-26-2012, 10:25 AM
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It took us several tries to find the right dose. Too high of a dose is as bad as not enough. We are on 20mg Focalin XR and use a booster of ritalin as needed. Several mornings, we use a booster while waiting for the Focalin to kick in. W tried adding Seraquel, but couldn't find a good dose. We have found in the last few weeks that keeping track of his behaviors has helped. M is 12 (younger mentally). We have 4 faces. If he gets a "pickle face" he loses stuff in his room, has extra chores and early bedtime. If he has a "thumbs up" day he has minimal chores, gets his stuff back and stays up 15 extra minutes. The 2 middle faces are regular chores and bedtime. We track it 2x day, because of when he was having problems. He puts the face on the calender and writes why it was a "pickle face" day. His teacher sends a note home with a # for his day. 1=good 4=bad.
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Old 02-27-2012, 02:51 AM
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My son really does not like his focalin, says it makes him "BORING". He will occasionally decide to only pretend to take it so he can enjoy feeling hyper. Could yours be doing the same thing??
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Old 02-27-2012, 10:08 PM
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Quote:
Originally Posted by Bamamom07
My son really does not like his focalin, says it makes him "BORING". He will occasionally decide to only pretend to take it so he can enjoy feeling hyper. Could yours be doing the same thing??

So funny that you and Linda both mentioned this. Actually, he DID dispose of the pill one morning. He had had a terrible day, and I confronted him about whether or not he actually swallowed the pill. He admitted he threw it in the trash because it made his stomach hurt.

That was THAT morning. But on the morning in question, dh watched him swallow it. So, who knows? Maybe he threw it up. (He can do that at will.)

The good news is that since then, the Focalin XR has been working very well. No further episodes like the one in my OP. In fact, his speech therapist said that he is so improved on his medication that he may not need her anymore. He's able to accurately complete any activity she gives him (sequencing, inferencing, etc.) and he speaks much clearer. She wants to re-test him on his med to see how he does.

The bad news is two-fold:

First, it wears off at about 4pm and he reverts back to his old behaviors (Dr. is giving an Rx for 5mg regular strength to get him through to bedtime) and

Second, he's having trouble sleeping (so we're gonna give him more Focalin??). The poor kid went to bed at 8pm and was still awake after 11pm last night. I'd been giving him 1/2 of a 3mg Melatonin but the doctor said I could up it to the whole 3mg. So we tried that tonight and he still had trouble falling asleep. I think we need more quiet time before actually turning out the lights.

Thanks, everyone, for your suggestions! Like many of you, we're taking it one day at a time.
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