Psych Meds Update

[lynn]

Last I posted, we had given a minimal dose of concerta and had a tic outbreak. However, DS insisted that it was helping him and that he could handle the tics, so we continued. Tics were pretty upsetting, worse than I had ever seen with him.

 

Then a few things happened. First, time passed (not an insignificant point.). Then, I convinced the psych. to give a very low dose of Prozac. Finally, I restarted his dose of zinc and magnesium (44 mg zn, 200 mg mag.). I also ran out of clarithromycin and had determined a week or so before that it would be good to stop and did.

 

And for some reason, all the tics stopped. We doubled his Concerta and they increased only just enough to notice.

 

On the OCD front, we wanted to do ERP for a while, but DS is so good at hiding the OCD that therapist thought it was ADHD and some weird form of Tourettes. Finally DH videoed DS in a meltdown and just this week the therapist finally got it. So now I have hope (but no reality yet) that OCD may eventually be better. Prozac hasn't had any real effect yet so in a week or two we may up that.

 

Current problem is that DS has completely stopped all homework and can't study. On the Concerta, he van at least do work when the OCD lets him, which currently isn't often. Wish us luck!

 

Lynn

[trggirl]

Thank you for the update!

[MomWithOCDSon]

Good luck, Lynn!

 

I know Concerta is one of the newer ADHD meds on the market, but beyond that, I don't know much about it. Is it stimulant or non-stimulant?

[lynn]

It is a stimulant--basically Ritalin in a timed release formulation.

[MomWithOCDSon]

It is a stimulant--basically Ritalin in a timed release formulation.

 

Hmmmm. For what it is worth, we've had two psychs now tell us that with our DS14, stimulant ADHD/ADD meds are not an option. They've both said that stimulants cause the OCD to intensify. We tried Intuniv -- a non-stimulant ADHD med -- for a while. But after a while, we really couldn't see any impact by it, and the truth is that when DS's OCD behaviors are under control, his ability to focus is pretty good. It seems to be the OCD that distracts him.

 

Please keep posting, though. I'll be interested to hear how it goes with the Concerta, Prozac, etc. It would definitely not be the first time one of our docs was "wrong" when it came to figuring out what meds work and what meds don't when it comes to our PANDAS kid!

[911RN]

It is a stimulant--basically Ritalin in a timed release formulation.

 

Hmmmm. For what it is worth, we've had two psychs now tell us that with our DS14, stimulant ADHD/ADD meds are not an option. They've both said that stimulants cause the OCD to intensify. We tried Intuniv -- a non-stimulant ADHD med -- for a while. But after a while, we really couldn't see any impact by it, and the truth is that when DS's OCD behaviors are under control, his ability to focus is pretty good. It seems to be the OCD that distracts him.

 

Please keep posting, though. I'll be interested to hear how it goes with the Concerta, Prozac, etc. It would definitely not be the first time one of our docs was "wrong" when it came to figuring out what meds work and what meds don't when it comes to our PANDAS kid!

 

 

FWIW, my DS11 cannot tolerate stimulants either- we tried 4. All a no go within 10 days. Concerta was the first we started with and the worst. Not able to sleep, OCD worsened, picked all the skin off his feet, jacked up! It was sad because early on it did help his attn and focusing and helped him in school but by Day 10- it was awful. It was no different with every stim after that....good in the beginning. Awful by day 10- all for little different reasons but basically all intolerable effects.He was not on a SSRI at the time of stimulant trials,as he is now, so I don't know if effects would be any different now??? We, too, tried Intuniv for a year then stopped it. Effects waned after about 5 months. Going higher only made him more tired.

 

I soooo wished my son would have had good effects with stims. Med options are few and not that great if they don't tolerate them. Especially, for trying to target the lack of focusing, inattentiveness, distractability. My son is more ADD, not ADHD. Hyperness is not an issue.

 

Good Luck with Concerta/Prozac! Hope it does the trick for him:)

[lynn]

Well, of course as soon as I post anything, things immediately change. Yesterday he came home and was just horribly activated. He couldn't sit still, he was mean agressive, and full of paranoid ideas. Got no homework at all done. Got to bed at 3 am, due to sitting around in his room doing nothing.

 

I thought likely it was the Prozac kicking in (it's been 10 days). I stopped the Prozac this morning. Things are quite a bit better today with regard to anger, but still no homework is being done...you know, sometimes the grinding misery of trying every day to fix something that you don't know how to fix is very hard to take. Anyway, I don't know if the Prozac was causing the problem, if it's the Concerta, or if, as DH maintains, it is totally random. I really need an integrative physician that gets PANS. How can I live in one of the biggest metro areas in the world and not have that? OK, rant over!

[datagirl]

My son was on Concerta for several years. It's so hard when you begin to be unable to distinguish the illness effects versus the medication effects! I took him off Concerta this summer and finally normal bedtimes were restored!!! My son couldn't get to sleep or stay asleep on Concerta and all day long he would barely eat until dinnertime. Then he was famished, and would have to eat a second dinner before bed or else he'd wake up hungry shortly after finally falling asleep. He was so skinny that it looked like we didn't feed him properly. Once off Concerta, he gained 10 pounds in a matter of a couple weeks and looked healthy again. The Concerta often worked unpredictably and usually wore off before we could even begin homework. On Concerta, rages and meltdowns ensued almost every late afternoon/evening and were lengthy events. Now off Concerta and trying Intuniv but the benefits first seen may have waned, and he is tired during school and often taking a nap (8 years old). Still have behavior issues, which improved greatly during a recent round of antibiotics following exposure to a sibling with strep.

 

By the way, we had depression issues, elevated fears and emotions on Concerta/Ritalin, etc. The depression issues may or may not be medication-related. The elevated fears and constant crying meltdowns, etc though have subsided since stopping Concerta.

 

Good luck. It's so tough to find the right balance for daily living and long-term success!!

[peglem]

Well, of course as soon as I post anything, things immediately change. Yesterday he came home and was just horribly activated. He couldn't sit still, he was mean agressive, and full of paranoid ideas. Got no homework at all done. Got to bed at 3 am, due to sitting around in his room doing nothing.

 

I thought likely it was the Prozac kicking in (it's been 10 days). I stopped the Prozac this morning. Things are quite a bit better today with regard to anger, but still no homework is being done...you know, sometimes the grinding misery of trying every day to fix something that you don't know how to fix is very hard to take. Anyway, I don't know if the Prozac was causing the problem, if it's the Concerta, or if, as DH maintains, it is totally random. I really need an integrative physician that gets PANS. How can I live in one of the biggest metro areas in the world and not have that? OK, rant over!

Could it be infection or exposure triggering something?

[lynn]

Thanks to all of you for your replies and support!

 

Peg, he does respond to virus/bacteria, but doesn't seem to have anything right now, and he "usually" shows physical symptoms. Can't rule it out though, sigh. It is discussions like that which make DH run screaming into the night yelling, "stop drawing conclusions, it's all random!" As you might guess, I am the one that always tries to connect the dots in my family.

 

I am coming to think it might be the Concerta that is causing this particular problem, or at least making it worse. The description of daily meltdowns is really compelling. Talk to psych tomorrow