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

[Sara PA]

Wow. Frankly I'd be looking at the intial waking and shaking as a seizure disorder. (Myoclonic jerks are a symptom of seizures which occur just at the point of waking: http://en.wikipedia.org/wiki/Myoclonus ) And the chronic shaking as a response to the medications, especially the antipsychotics. The antipsychotics can not only cause that, they can lower the seizure threshold. And ticcing can be caused or made worse by stims.

If the antipsychotic did cause the shaking, it is entirely possible that the condition is permenant.

As for not wanting to play with toys that require fine motor skills and trouble with doing school work (and the anxiety related to it), I would have his eyes checked for convergence. Are both eyes able to focus on the same point?

Your doctors should be paying attention to the fact that your son did his best while on two anticonvulsants.

Knowing what I know now, if your son was my son I would do exactly the same thing as I did with my son -- I'd get him off everything but the Lamictal and keep it like that for enough months for his brain to heal from taking all those other drugs. But that's me and most people will tell you I see seizure disorders where no one else does.

That said, I do have to point out that it doesn't sound like all those other medications are doing him a whole lot of good. Gotta ask the old question: Is he doing better now or was he better before he started taking medications? (And better at school isn't the question....better all around is.)

 

[gcvmom]

We were told dopamine antagonists are the first choice, like Depakote, and that APs are also used because of their dopamine blocking properties for treating the chorea symptoms.

Sometimes I start wondering if I'm expecting too much? I just want my kid to be able to write legibly and without feeling like it is such a monumental task -- he USED to be able to do that. I want him to be able to enjoy his passion for reptiles and be able to hold his pets without shaking so badly he nearly drops or flings them across the room.

Forgot to mention, propranolol was used for a time, but didn't seem to do much.

Oh yeah, and his ASO titers are high, but throat culture negative. Cardiac consult was negative.

 

[gcvmom]

Sara, he still has the shakiness when I wake him to take medications. And he shakes still now. Ask him to pick up a stack of laundry and he's jerky. Watch him try to use a fork and he's jerky. The movement problems have been there since he was a preschooler/toddler. They suddenly got worse in the fall of 4th grade, when nothing else had changed. And the mood problems seemed to evolve in relation to that timing.

It's very confusing.

He's seen two pediatricians, two psychiatrists, four psychologists, and one neuro. I'm about ready to fly him up to Stanford to see a peds movement disorder specialist because I feel like everyone's playing darts with his symptoms and their approach to treatment. I realize the diagnosis is a rare disorder and there isn't a lot of research on it. So that's part of the problem to finding a fix. It seems like once we get one problem addressed, another one takes its place.

Maybe we try another medication wash, only longer this time, over the summer... That was really hard to go through last time...

 

[Sara PA]

Did he ever have an EEG?

I'm suggesting that the shaking and jerking you saw when he awoke as a toddler was one thing and the chronic shaking you see now is a different thing. By the time he was in fourth grade, he had been on a variety of drugs for years. Exactly what was he on when that shaking started?

 

[gcvmom]

At the time of the marked handwriting deterioration, he was on a high level of Concerta and Risperdal.

Never had an EEG but did have a brain MRI this year, which was negative.

 

[Sara PA]

I think you're seeing a bad reaction to the medications, not SC. If he was on an AP when the shaking started, I'm frankly shocked that the AP wasn't the first explanation considered. Uncontrolled shaking is a well known adverse reaction to antipsychotics.

And, if the problem at waking is a seizure disorder, an MRI wouldn't detect it. Seizure disorders are ruled in with EEGs.

 

[gcvmom]

You could very well be right. Which is depressing. Especially if the increased shaking turns out to be permanent. Sh*t.

 

[Sara PA]

I've been googling around with this. I've turned up some references to a study which found that high levels of stimulants can cause parkinsonism (the shaking kind) but I can't find the actual research or a full article related to it. (Wiki even says that rarely antidepressants can cause it.) It would fit that the shaking started when he was on high levels of a stimulant and an antipsychotic.

 

[gcvmom]

But he does also have the "milkmaid grip" (aka choreoathetosis) and high ASO titer related to Sydenham's.

And he did have the jerkiness as a toddler.

So maybe those are all separate issues ON TOP of the drug-related issues.

So what would be a reasonable drug holiday to get everything out of his system?

 

[Sara PA]

Hey! If it's seconday parkinsonism, the NIH says if it's caused by antipsychotics, it's usually reversable.
http://www.nlm.nih.gov/medlineplus/ency/article/000759.htm

 

[gcvmom]

Well, I'm happy to hold onto any shred of hope for recovery at this point!

 

[Sara PA]

If it's caused by the drugs, the holiday should be permenant unless you decide to trade the shakes for better behavior. Doesn't sound like the behavior improvement is worth the trade but then I'm not there. That means no antipsychotics again and being very cautious about stims and maybe even antidepressants.

As for getting everything out of his system, that's just the first step. That'll take a few days or weeks after stopping the medication, depending on the medication. Then the body, particularly the brain, has to recover from having the drug introduced on a daily basis for years. It took my son's brain years to heal from the damage done by the antidepressant he took. I would say that you should expect months of recovery time once the drugs are gone.

 

[Sara PA]

Googling "choreoathetosis, parkisonism" I found a link to a JJNP article which starts out....

"Dystonia and chorea are uncommon abnormal movements which can be seen in a wide array of disorders. One quarter of dystonias and essentially all choreas are symptomatic or secondary, the underlying cause being an identifiable neurodegenerative disorder, hereditary metabolic defect, or acquired systemic medical disorder. Dystonia and chorea associated with neurodegenerative or heritable metabolic disorders have been reviewed frequently.1 Here we review the underlying pathogenesis of chorea and dystonia in acquired general medical disorders (table 1), and discuss diagnostic and therapeutic approaches. The most common aetiologies* are hypoxia-ischaemia and medications.2-4 Infections and autoimmune and metabolic disorders are less frequent causes. Not uncommonly, a given systemic disorder may induce more than one type of dyskinesia by more than one mechanism..."

*In American English, etiology or cause.

 

[gcvmom]

He had a nuchal cord at birth (wrapped around his neck) so perhaps that was a hypoxic event that started things?

I don't think we could survive very long without medications. The two weeks last summer he was off everything was horrible. And I would only have about 8 weeks this summer for a medication holiday before school starts. The thought of going backwards is frightening.

I do see improvements in some areas on Risperdal. It's subtle things like being more aware of his environment, taking better care of his things, expressing his feelings better. But maybe that can also be acheived on other medications, too.

Sara, thank you so much for spending the time to respond to my anxious ramblings! You've given me a lot to think about and more questions for the psychiatrist and neuro on Tuesday.

Smallworld, KLMNO and Oceans, thank you also for your posts. The collective knowledge on this board is second only to the care and compassion that is shared here on a daily basis

 

[Sara PA]

Restart the Lamictal and get rid of the antipsychotic and the stimulant?

 

[gcvmom]

I am inclined to put Lamictal back in. Giving up Risperdal would be o.k. (but it did improve his handwriting a bit). But giving up the stimulant... I just don't see that happening with this kid. I'll put it on the table Tuesday when I make my calls

 

[smallworld]

Just a thought -- my son took stimulants off and on from age 9 until he went into day treatment last winter. They did help him focus. But it was at great expense to his mood issues. When we first took him off stimulants at age 11 -- he begged us because Concerta was making him feel depressed -- he was more hyper and inattentive than before he took stimulants. And of course, we thought he really needed them. But after about 3 weeks, the hyperactivity settled down. Once you get your difficult child off Risperdal and back on Lamictal, you might want to give him a true stimulant holiday this summer to see if he really needs it. My son's psychiatrist at the day treatment program warned us never to use stimulants again because he thinks they destabilize his mood. We still deal with inattention, which we think is part of his mood disorder, but he's extremely calm on the right combo of medications for his mood issues.

 

[Sara PA]

He had a nuchal cord at birth (wrapped around his neck) so perhaps that was a hypoxic event that started things?

I was googling around with this idea. Interestingly, nuchal cords are a known cause of seizure disorders as well as other neurological issues.

 

[gcvmom]

Smallworld -- THAT approach, I could definitely try over the summer. FWIW, he's already acting better today at the lower dose of Risperdal.

Sara, I'm going to take a google at that too. I had not read about the seizure connection -- the neuro part I could understand.

I wonder with the various doctors that have seen him if part of the problem is that some of these issues are not always grossly evident, until you spend some time with him and then they stand out. Which is another reason I'm glad we did the neuropsychologist evaluation last month. Her report will be helpful for anyone who sees him in the future.