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Joan: ds was on Risperdal when he had his ivig (which I think is similar to zyprexa), but had been on it for quite a while. I have been at that point of indecision many times. You desperately want something to help him, but it will muddy up the "what helped him" picture if you do 2 things at once. Have you talked to Dr B about it? I would maybe get his take on it.

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I'm right there with you. Our neuro said to start ds on Buspar, but then his nurse said not to because we wouldn't know if increased symptoms came from stress of school starting or the med. Same office - 2 different takes. I know sometimes you get to the point where you don't care "which" works, as long as something does...

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Danny was on risperadal for 3 IVs Im sure its fine .Danny hasnt needed any since march 10.He was on it for almost 8 months.I cant say good or bad but keep a close eye.He got a movement disorder when he was on it .Feet shuffling (anyone remember) His neuro swore it wasnt from the risperadal but when he stopped it the shuffling stopped too. Then again he had 3 infussions soo who knows..Good luck.Why zyprexa and not risperadal?

 

melanie

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Would or has anyone used Zyprexa during IVIG. We are having IVIG #2 next week. I want to start Zyprexa thinking it might help a little. My son is soooo bad right now. Has anyone tried that while having IVIG. I probably should 3 - 4 wait until weeks after IVIG but not sure. I'm getting desperate.

 

Yup, both zyprexa and risperdal are atypical anti-psychotics.

 

It is my understanding that Dr. K (another opinion, I know) likes to have kids off psych. drugs prior to IVIG.

 

That said, our dd was (and still is) on a low dose of prozac when she had IVIG. But she had been on that for a while. Our intention, was not to change multiple variables at once.

 

Personally, I would really wait on starting Zyprexa, b/c like the others have said, it "muddies the waters" (and what if he is even worse on the med, but you might not know if it is the med that is causing the problem, vs. the PANDAS, or IVIG "turning back the pages".)

 

Also, I would even discourage you from starting Zyprexa 3-4 weeks after IVIG...since that is when many kids start to "turn around" after IVIG. So, if he starts to improve at that point, it might be incorrectly credited to the psych drug vs. the IVIG "starting to do it's job." Or if he reacts badly to the psych. med, it might mask any improvement from IVIG.

 

You might also consider how long this (and other psych. drugs) take to "kick in". If he did start it would you expect to see benefits right away? And how about withdrawal? I know some psych. drugs can be really tough to wean off of once they are started. I know getting off of Lexapro was a huge nightmare for us. And, I understand weaning off risperdal is tough too?

 

I forget...are you doing advil now?

Edited by EAMom
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I think you are right. I am really starting to panic and grasping at anything I think might work. It probably is best I wait until 4-5 weeks post ivig and if things don't improve consider it then. His compulsions are so intense. To watch him scream out in frustration and at times in tears, at times slams things, punched things, I feel so helpless. I have been giving 3 advil once a day for about 4 days. Should I increase that?

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Thanks so much. I got him in to psyciatrist today too because I was so freaked out by the EXTREME anxiety. I thought I was going to have to bring him to the hospital for sedation at one point there today. You think I would be use to this by now. Psyciatrist recommended foregoing the Zyprexa and giving him 1.5 - 2 mg of clonazepam every 4-6 hours to get him through next week and see if the IVIG gives him some relief. I gave him 1.5 mg after I had it filled and he is doing a little better. I was giving him 1 mg occasionally before and wanted to go up on it my he wouldn't take it. I also gave him 3 advil, I will try to get 3 more into him before bed. Next week can't come quick enough. I would guess his YBOC is about a 38 right now.

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oh hon. I'm glad the psych doc could help. I can only imagine how scary it is to still see this anxiety after you've pulled him out of school and seemingly eliminated the stressor.... I am going to be holding out all hope next week that this IVIG will bring some relief for him (and you!!).

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The things that helped us while seeking medical help were systematic advil every 6 hours even when sleeping, for 4 days, benadryl, and erp. I know u just did an intense erp program. Are u able to keep it up at home? It was very hard in an exacerbations, but we did a program that was essentially a pretty constant, all day effort, so she could survive. Literally erp was our life. I hesitate to even post this, as I know how hard it was to start at a 28' and if he is in upper 30's, may not be possible. Has he been able to do any since he came home? We did feel that it let us hold steady, which was a kind of success at the time.

 

Someday, I hope there is an inpatient erp and ivig program for these kids like yours. My heart goes out to you.

 

Is there any reason he cannot start prednisone now??? I will pray the higher dose ie saving Sammy kicks in soon.

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Hi, Joan:

 

Posted about clonazepam (klonopin) on your other thread, but FYI, we also tried zyprexa for a while. It did not help our son at all - seemed to make things worse - and when we significantly increased the dose (per child psych's direction), it triggered a dystonic reaction for our ds. Our son's emotional state improved significantly after we tapered off of both the zyprexa and the ativan (another benzo, similar to clonazepam).

 

Every kid reacts differently, but wanted to share our ds's experience with you. Praying that IVIG #2 brings your ds relief!

 

 

Thanks so much. I got him in to psyciatrist today too because I was so freaked out by the EXTREME anxiety. I thought I was going to have to bring him to the hospital for sedation at one point there today. You think I would be use to this by now. Psyciatrist recommended foregoing the Zyprexa and giving him 1.5 - 2 mg of clonazepam every 4-6 hours to get him through next week and see if the IVIG gives him some relief. I gave him 1.5 mg after I had it filled and he is doing a little better. I was giving him 1 mg occasionally before and wanted to go up on it my he wouldn't take it. I also gave him 3 advil, I will try to get 3 more into him before bed. Next week can't come quick enough. I would guess his YBOC is about a 38 right now.

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