More medication tweaking... what's your take on this?

[gcvmom]

So the psychiatrist decided we should try to take difficult child 2 off Lamictal because the neuro thought maybe with adding the Risperdal last month he wouldn't need it since he is also on Depakote ER. The Risperdal was reintroduced to address the shakiness from difficult child's Sydenham's chorea (atypical antipsychotics and other dopamine-related medications like Depakote are used to treat this disorder). (I know someone here suggested earlier that maybe this was a mistake -- but please read on).

difficult child 2 had great success, for a while, on Risperdal and a stimulant several years ago. Handwriting was good, mood was good, attention was good.

The week after coming off Lamictal, he was VERY emotional and easily overwhelmed. But that got better last week, and this week it's okay too. He does seem a bit more distracted this week.

So I talked to the neuro yesterday because after 6 weeks titraiting up to 1.5mg Risperdal, the hand shakiness is still fairly significant. Handwriting has improved somewhat, but when the poor kid wants to hold his pet lizards, he just about drops them from shaking so bad. The neuro gave the okay to go to 2mg to see if that helps the shaking. (difficult child's been as high as 3mg Risperdal in the past).

Last night was first dosing at 2mg. Today after school he is ALL OVER the place to the point I gave him a Focalin at 3:30 because he is just not able to do his homework. I'm hoping that in the next 30 to 45 minutes he'll snap back enough to be able to get something accomplished.

Is it just coincidence that he's more distracted going up on the Risperdal? He says he wasn't this way at school -- that it's only since coming home. But when he was on Lamictal, I got a solid 9 hours of coverage of his stimulant patch. Now it's more like 7.

Two years ago, the stimulants stopped working and he was getting more emotional so we upped the Risperdal AND the stimulant. But that seemed to start a downward cycle where the emotions were o.k. but the stimulants were like water. So we switched to Abilify. And then his emotions and mood went down the tubes and I suddenly had a manic kid on my hands who was obsessive, panicky and extremely emotional.

Is it possible the Lamictal was doing more to hold him together both emotionally and attention-wise, or somehow allowed the stimulant to do its job?

I know this is complicated and should probably call the psychiatrist tomorrow -- I wanted to give it a couple of days to see how he does first.

What do you all think is going on with him today?

 

[smallworld]

I think you are seeing rebound from the stimulant that you didn't see when Lamictal was on board. Have you considered trying a medication combo of Lamictal, Depakote and Risperdal (no stimulant)? Perhaps the stimulant is making things worse.

 

[gcvmom]

I hadn't thought of that.

Today he had minimum day and was VERY goofy, disorganized thoughts, almost like he had absolutely NO stimulant patch on at all -- and the patch had only been on for 5 hours. It's as if his ADHD was WORSE.

He said his thoughts were "like somebody fired off a smoke bomb in my head" and that he just couldn't concentrate the past two days. When we were waiting for easy child to get to the car, I wondered out loud where she was and he said, "She's dead. I ate her." Then he started laughing like he was drunk.

This is definitely "off" behavior from how he was last week at 1.5mg Risperdal and no Lamictal.

I'm giving it one more day and the will call the psychiatrist tomorrow afternoon.

Any more thoughts on what's happening here?

 

[klmno]

I could be way wrong here, but my guess is that there is more mood disorder than ADHD going on. It appears that through the rapid physical/hormonal changes of this age with my difficult child, medication combo has to be re-evaluated frequently.

 

[smallworld]

From what you're describing of today's events, Lamictal was doing a good job of mood stabilization. I think I'd ask the psychiatrist to add it back in.

When was the last time you tried him off a stimulant? Do you give him weekend or vacation breaks? I agree with klmno that it sounds more mood disorder than ADHD. Lack of concentration and fleeting thoughts can be related to hypomania/mania.

 

[gcvmom]

I guess what I'm confused about is why increasing the Risperdal would suddenly result in this "hypomanic" behavior? What exactly is going on between the Risperdal and Depakote ER?

 

[klmno]

I'm still trying to learn all this too, so someone else please correct me if I am wrong. I think that a first line mood stabilizer has to be in the mix- which would be like lamictol or lithium (I can't think of the others). I think risperdal is in a different class. I can't remeber where depakote falls but I believe it is a little different, somehow, from the other two. My son is currently on lithibod (same class as lamictol), depakote er, and an AP (the AP is changing frequently). Anyway, so far we haven't found anything that can replace the lithobid (time release version of lithium). It takes care of some things, the depakote takes care of others. The AP is added because, I guess, at most "risky" periods, something else needs to be in the mix to decrease manic symptoms. This is for BiPolar (BP)/mood cycling. I don't know if that is what is going on with your difficult child, but based on the medications being given, it sounds like it might be. Oh- by the way- some of them take longer than others to be effective. I have also found, that one medication might not be very effective but another medication in the same class might be. My difficult child couldn't stay on lamictol because it actually kept him awake more and stirred him up more.

 

[gcvmom]

I had him remove his patch early today, so we'll see if that helps at all. Right now he's just REALLY struggling with staying on task. The wind blows and he gets distracted. He blinks and he gets distracted. He inhales and gets distracted.

Oh yeah, and he is CONSTANTLY eating. Thank you, Risperdal. Not sure this was a good move.

 

[smallworld]

My son actually got worse on Risperdal. He took it for a month to settle down his manic reaction to Zoloft and ended up with both dystonia and akathisia (an internal and external restlessness akin to agitation). Is that what you're seeing?

It may just be that the increase in Risperdal coincided with Lamictal completely leaving his bloodstream. When exactly did he stop Lamictal?

 

[gcvmom]

The last day he took Lamictal was April 30th.

I've seen the dystonia before when he tried Zyprexa and a bit less so with Abilify. So I don't think that's what I'm seeing. It just seems to be a resurgence of ADHD symptoms, despite being on the stimulant during the day.

He really didn't improve much after taking the patch off this afternoon as far as his attention and silliness goes.

This is what happened 18 months ago when he was just on Risperdal and a stimulant. It's like the Risperdal counteracted any effect by the stimulant... so I'm trying to understand the neurochemical processes that are going on here.

Last spring, after getting him up to 3mg Risperdal and a ridiculously high dose of stimulant, psychiatrist switched him to Abilify and stimulant. Which was o.k. for a couple months, and then same problems started happening with the stimulant not working. Then he added Tenex, and that's when he REALLY, REALLY became manic. (The whole ball started rolling a year ago last fall, which was when we think the chorea and mood part of the Sydenham's was beginning to manifest itself).

So in trying to help his fine motor more by adding the Risperdal and bumping it up to see if he gets better control of his shakiness, it's making everything fall apart again (apparently) since he's off Lamictal (that was added in January... because he was picking at himself and still very emotional).

It's all very confusing...

 

[smallworld]

I didn't mean was he experiencing dystonia. I meant was he experiencing akathisia.

FWIW, it sounds as if Risperdal isn't a good choice for him. I'd ask for Lamictal back ASAP.

 

[gcvmom]

That makes more sense now that I've read some more about it. If he can't take Risperdal for the chorea, I was told the next option could be IVIG... nothing's ever simple, is it?

 

[gcvmom]

Well he is doing better today, and I haven't changed a thing. We'll see how the evening progresses....

 

[smallworld]

These difficult children -- they certainly keep us guessing!

 

[gcvmom]

Was that ME who said he was doing alright this week? What was I smoking?

His principal pulled me aside this afternoon when I came to pick him up early to go tour his new school for next year to inform me of two separate incidents this week of inapropriate behavior. First on Tuesday he was tickling the leg of a boy who was wearing shorts and his hand went a little too far up the boy's leg. Then yesterday, a classmate had red ink on the front of his pants and difficult child said "your penis is bleeding" and began to laugh.

Something has to be changed. Either we need to add Lamictal back in, add it and reduce the Risperdal, or drop the Risperdal and look for something else to help the chorea. I'm getting tired of the rollercoasters.

 

[oceans]

We thought my son had ADHD when he was younger, but the inattention was due to his mood disorder. Risperdal caused him to have major mood swings from one extreme to the other in a crazy cycling fashion. Adding Lamictal to his medication regime made a big difference in his stabilization.

From what you are describing, it sounds like the Lamictal was doing something to help with his stabilization.

 

[gcvmom]

Well, psychiatrist called me back today and said to go back down to 1.5mg on the Risperdal for starters. I'll call him again on Tuesday.

Smallworld, you called it!

He said, "Akathisia."

 

[Sara PA]

I missed the background. When was your son diagnosed with Sydenham's Chorea? Do they know what might have caused it? What medication was he on when he first developed the symptoms?

 

[gcvmom]

Sara, here's the history:

He was diagnosis'd this past March with SC. SC is believed to be caused by an autoimmune inflammatory response to strep infection and can result in damage to the basal ganglia.

He's had ongoing shakiness at various times at least since he was 4 (it's documented in an old 2000 report by a speech pathologist). He would be a bit shaky and jerky when he woke up. He wouldn't want to play with anything that required fine motor skills (Legos, drawing, etc.) He did have two positive strep cultures at age 2-3, but they were treated.

He was diagnosis'd with-ADHD at age 5 and started on short-acting Adderall. He was eventually put on Concerta upon starting kindergarten. The next year, Zoloft was added because he was having increasing difficulty controling impulses on the playground (by October, he had 4 behavior citations, several detentions and was put on a behavior contract in school). Zoloft made things worse and in retrospect he was sort of hyopmanic. So it was d/c and we added Risperdal, which seemed to help for the next two years. by the way, he always seemed to need more stimulant than his brother in order to acheive the same effect.

In 2005 he had a suspected strep infection while we were on vacation that was only partially treated with antibiotics (our pediatrician had called in a scrip for what was initially a persistent cough that would not respond to the usual treatments, and then developed a fever. After a day or two on the rx he broke out in a fine red rash -- I thought it was allergic reaction, but we now believe it was scarlet fever -- so I stopped giving him the antibiotic).

16 months later, his handwriting suddenly became horrible (writing samples are like night and day) and he started having more mood problems and issues on the playground. And the stimulant became like water no matter how much he took. At the time, he was on Concerta and Risperdal.

psychiatrist switched him to Abilify, and that was o.k. for a couple of months, but then he started to deteriorate again. More of the same with playground issues, impulse control, etc. psychiatrist added Tenex. difficult child became MMMMMAAAAANNNNNIIICCC. EXTREMELY pressured speech, flight of ideas, paranoid and almost delusional (he thought he could tell what strangers were thinking), hypervigilant, hyper-hyper-hyperactive.

At that point, we stopped everything for two weeks and then started from scratch, this time adding Depakote ER first. That seemed to help a lot. After two months, we added a low dose of stimulant to see how he'd tolerate it and he seemed fine. (He now is on Daytrana and takes 1/2 the amount his older brother does.)

Five months into this treatment, he still seemed to get emotional and depressed, and he got in trouble for bringing a knife to school and was still having problems on the playground. psychiatrist added Lamictal. Things looked good. In the process of establishing an IEP for him, I saw a neuropsychologist and mentioned the hand shaking and the handwriting issue having coincided with his mood getting worse, and she suggested a neurology consult.

Neuro put him on Zyprexa to address the tremor/chorea but two days into it he had a dystonic reaction (and in hindsight, this also happened to a milder extent on Abilify). So now he's back on Risperdal. The first 1.5mg did some good, handwriting got a little better (not as good as it was two years ago, though) and his cognition and self-awareness even got better. psychiatrist felt we could try to drop the Lamictal to see if he didn't need it anymore with the Risperdal in place.

But I was still hoping to get his handwriting back to where it was, so I asked on Monday to increase the Risperdal a bit to see if it would help. He only went up to 2mg. In the past, he was as high as 3mg. Apparently, that was not a good idea!

So that's how we got here today -- and you deserve a medal if you've read this far!!!

 

[smallworld]

I just googled Sydenham's Chorea and read a few articles about it. Nothing I read suggested treatment with APs, but it did suggest treatment with anticonvulsants and Lithium (as well as some other classes of medications). Am I missing something?