Thoughts on Risperdol and/or Zyprexa

[Joan Pandas Mom]

My son is going on 10 weeks Friday post IVIG. Not doing good. Dr. K. said it takes longer for the older kids (he will be 16 end of Aug.) for the IVIG to work. He just finished a 5 day prednisone burst. Prednisone REALLY cranked things up. His last dose was Sunday and things are still cranked up. Not as bad as while on prednisone, but still bad. I am thinking about trying one of the anti-psycotics again. He took Abilify 3 years ago, it helped at first then just made him angry and argumentative. I just read a few posts on high dopamine levels and Risperdol helping without increasing the dopamine, any other thoughts? My son had a 2 1/2 strenuous workout today, I wonder if these workouts are increasing his dopamine.

[peglem]

My son is going on 10 weeks Friday post IVIG. Not doing good. Dr. K. said it takes longer for the older kids (he will be 16 end of Aug.) for the IVIG to work. He just finished a 5 day prednisone burst. Prednisone REALLY cranked things up. His last dose was Sunday and things are still cranked up. Not as bad as while on prednisone, but still bad. I am thinking about trying one of the anti-psycotics again. He took Abilify 3 years ago, it helped at first then just made him angry and argumentative. I just read a few posts on high dopamine levels and Risperdol helping without increasing the dopamine, any other thoughts? My son had a 2 1/2 strenuous workout today, I wonder if these workouts are increasing his dopamine.

Our experience with risperdal was the same as you experienced with abilify- better at 1st, then it made things worse.

[Iowadawn]

Just a couple comments I want to add. We have an 11 yo son that was dx'd PANDAS after probably 8 years of trying to figure out what was going on with him. The aggressive/violent behavior, with his age and size propelled us toward medications for him. Frankly, we were headed toward making the headlines of a local newspaper (victims) so we needed to do something. Each families' situations and children are all unique and you do what you have to do at the time to survive--in our (PANDAS families) many time it is picking the lesser of two evils. You do your best. Our psychiatrist has been very good and has learned a ton about trx options (IVIG-our son has had two)and abx. He has told us that he knows the meds will be short term. We have been on a few, not with too much help for long. Risperdal seemed to appear that it was going to work, but then he started tanking and his blood results went all wacko from being on it. Prolactin levels, blood sugar, cholesterol, liver function & weight have to be closely monitored. He had to be weaned off the Risperdal. Zyprexa is another one that is not weight friendly. Our boy crashed miserably and was placed on Geodon--same family as Risperdal, Zyprexa, etc. It is a little "friendlier" to the body than Risperdal & Zyprexa. Its major downfall is that it can make you tired, but we have been pleased with how it has worked in the mix of things. Evan's weight also quit increasing. We are 14weeks post IVIG #2. As long as he is tolerating his meds and is trending positive we will wait to wean him when we feel more comfortable doing so. We have had too many years of ^%%#%@.

 

Do what you have to do and don't beat yourself up. Best wishes.

 

Dawn

[Bat_Sheva_Myllys]

We too tried Risperdal, as it is called here, as a symptomatic treatment. It was way back in 2008 after following a respiratory infection all symptoms returned and the very good efect of the IVIG was gone and the unbelieving neurologist who first did the IVIG decided to have it discontinued because he thought it was hopeless if it did not produce immediate and permanent results (beware of specialists who care not to learn of new things and who will not be in touch with those specialists who have the patience and will to keep on trying to help our children).

Absolutely the same tendency - first weeks were OK, in some ways it even improved the symptomatic level, but then started our nightmare as it made Sandra psychotic to the extent I thought I had no choice but to admit her to a mental institution. She was badly violent, also towards herself, highly frustrated, even more than she is by the "normal" PITAND symptoms, lost contact with the environment. We had no specialist to help us but our GP turned friend who will never leave us decided this had to be stopped so we weaned her and replaced the Risperdal by a minimal amount of Paroxetine (Paxil, Seroxat), just to calm ehr down after the terrible ordeal she had. We use it to help the frustration her condition and the lack of medical understanding and will to help her and the loss of her young life (she is 20 now and this has been going on since she was 15) cause her, but in no way is it medication for PITAND or PANDAS symptoms.

[melanie]

We too we on Risperadal.1st 2 weeks was unbelievable,then nothing .Tried upping the dosage still nothing ,lowered the dose to .25(very low) and stayed there for 6 more months.Finally stopped after IVIG.Now were using intunuv(sp).Its the new tenex ((kindof )2mg in the am .Finding it to be ok,Dont beat yourself up.You can try it.I know many people have had great success with risperadal.My son is 16 so I undersstand were your at emotionally with him.15 was the worst !!!Is he training for football?Whats witht he heavy loading?

 

Melanie

[tpotter]

I don't know how to attach an article, or I would. But, check out this link by Dr. Tanya Murphy: http://www.primarypsychiatry.com/aspx/articledetail.aspx?articleid=561 It's in Primary Psychiatry, and notes that in the PANDAS subtype, SSRI's can make behavior problems worse. This would totally explain my son's reactions to any and all anti-psych meds. This might also explain the situation you guys are having.

[Worried_Dad]

Per local doc recommendations, we tried our son on both risperdal and zyprexa (among other psych meds) at different times. For our PANDAS son, these were bad news - made symptoms worse. Psychiatrist kept insisting we increase the dose of zyprexa when our son was not improving until he had a dystonic reaction which scared the heck out of us. We tried zoloft, too, but it made OCD symptoms worse (well documented side effect of SSRI's for many PANDAS kids).

 

Biggest warning I'd give: beware the benzos, like ativan and klonopin, for anxiety. Ativan completely pushed our son over the deep end into suicidal nightmare territory, and Dr. K warned us that he has seen this numerous times with his PANDAS patients.

 

I know some parents on the forum have had better results with these meds. Every child's situation and body chemistry are different. I'd just advise extreme caution if you start a psych med: start with a very low dose and increase dosage very cautiously. One ped neurologist told us that after a brain injury like that induced by PANDAS, "it's impossible to predict how any given psych med will affect a given patient. It's a gamble."

[MomWithOCDSon]

We have tried them all at one point or another. Zyprexa made him ravenous, even at a very low dose, and it just barely seemed to take the edge off his anxiety. Risperdol did nothing; the psych would have upped the dose, but we balked, so he backed off. Abilify was activating at the dose originally prescribed; we found that if we halved the dose, it did seem to help at first, but then the effectiveness at that dose wore off after about one week, and we were reluctant to go back up on the dose, so we just quit it.

 

As both tpotter and WorriedDad have said, extreme caution is probably best when it comes to the psych meds overall, though the Dr. Murphy/Dr. Storch paper really only addressed SSRIs and not other psych drugs. We have found some success literally cutting prescribed doses in half; the psych says 200 mg. of Luvox, and we have our best results at 100 mg. The psych says 1 mg. of Abilify, and for a week we had some help from 1/2 mg.

 

And I don't think that it is just PANDAS kids who have these reactions to these drugs; my guess is that it is more common than not, but psychs have been taught to increase dosages, rather than decrease them, generally. At the IOCDF conference, I sat in a "regular OCD" session regarding OCD and comorbid disorders (autism spectrum, ADHD, TS, etc.), and Dr. Storch was on the panel. The advice was that for kids with OCD and a comorbid condition, once again, less is more when it comes to SSRIs. That "standard" or higher doses can be activating. I found the intersection with PANDAS OCD interesting and, frankly, exciting, and commented on it to Dr. Storch after the panel. As he indicated to me, the research continues.

[Mary M]

Oh Joan, I am so sorry to hear that things are still not progressing. Interesting that Dr K suggests it's an age issue. If that's the case could your son need more IVIg? Dr K's website actually says something about monthly IVIg infusions. Has Dr K considered any other treatment options for your son? I know when we were begging for something he very confidently told us we had to wait and he was sorry things weren't progressing but we had to wait to see if the IVIg would take effect at some point. Is that still his take with your son...wait it out? So difficult when you are living it day in and day out and night in and night out.

Mary

from Michigan

[Joan Pandas Mom]

Thanks so much for your input. Dr. K. told me to give him a quick call tomorrow to tell him what happened with t he prednisone burst. I'm wondering if he is going to recommend IVIG # 2. We didn't see any improvement form #1 except for day 2, he went about 45 min. without a ritual, and seemed so calm, I thought it was working, but then back to same old nightmare.

[Joan Pandas Mom]

My son thinks he is training for football, but I have already started warning him he won't be playing this year. It is very sad. It is his passion, he is very talented and he works so, so hard at it. He has had 2 concussions over the last 7 years. Between those, the inflammation going on in the basil ganglia, and many common head injuries associated with football, I had to tell him he can't play.

[fuelforall]

Joan

Dr K will probably say to give it another month before considering IVIG number two.

My son just got an infection from some place and his symptoms ramped up again. he had improved after three months past IVIG.

We're checking for a peptic ulcer, then if it's so, he gets abx for that. Wait and see.

Then we'll have to consider redoing IVIG.

 

Michael

 

PS Same goes here for Risperdal, my son is on it but I don't think it does anything like it did the first couple weeks.

[purple66p]

My son has been on all the antipsycotics (it seems)as we thought this was bipolar disorder. We started with Riperidol, and it had an immediate positive effect. However, effect started wearing off..increased dose...increased dose...until we finally changed to another antipsycotic. Next time: Abilify. Again, immediate positive effect...wearing off...increase dose...rinse and repeat. Then we tapered off Abilify and on to Seroquel, then Geodon. Going off Abilify induced a psychotic reaction--very ugly. He was suicidal, angry, and barely coherent. He missed a month of school. Back to Abilify...positive effect...wear off...increase dose...rinse and repeat.

 

Now that we are thinking it is PANDAS, we're tapering off Abilify--very slowly this time--and pursuing this as a biological disease, not psychiatric. It is painfully hard to get off of these meds without inducing a bad reaction, so be cautious. Also, my son has changed from being a thin kid to overweight, and craving food--mainly carbs--all the time.

 

Also, extremely bad reaction to Prozac. Won't go there again!

[Tenacity]

Hi, Joan.

 

I too am worried and impatient, waiting for IVIG to heal my son. He is 11, physically big and physically mature for his age, has been ill for at least three and a half years (perhaps longer) and is now about 15 weeks post-IVIG. We've seen lots of "flipping-back-pages" flare-ups, and some significant but modest improvements, but we're still in terrible trouble.

 

Psychotropic drugs are tricky, since what helps one person may well harm another, and vice versa. I know the atypical antipsychotics are often prescribed for severe symptoms, because, for one thing, they work faster than lots of other drugs. I have no doubt that they can help certain patients in certain situations. However they were bad news for our son. He was incorrectly diagnosed with bipolar disorder just after his eighth birthday. Then came a long series of failed medication trials, which included Zyprexa, Risperdal, Seroquel, Geodon, and Abilify. All these drugs proved to be of no help to him, and in fact gave him more nasty symptoms.

 

I'm a firm believer in the value of maternal instincts, and if you sense that a drug helped your son in the past and might help again, that counts for something. But I suggest that, when you talk with Dr. K., you ask him what he thinks about the idea. I believe none of these drugs would have any direct effect on the immunological/autoimmunological storm going on inside our sons' bodies. And if you administer a medication that has some negative effect, you'll just wind up inadvertently adding insult to injury.

 

Here's hoping we both see some good things happen for our boys soon!

 

Tenacity

Edited July 29, 2010 by Tenacity

[Joan Pandas Mom]

Sorry to hear about new infection. I hope things turn around soon.