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I'm new to this forum, but have already found it very helpful. (Been hanging out on the wemove.org Sydenham's chorea forum, because our son was originally diagnosed with SC. Great folks there, very helpful, but PANDAS seems to be the prevailing diagnosis for our son now.)

 

My 12-year-old son was diagnosed with acute rheumatic fever with Sydenham's last summer (2007). The violent seizure-like twitching episodes and tics have subsided, but the OCD-type symptoms seem to be getting worse. Our psychiatrist started him on Zyprexa about a month ago, certain that it would significantly reduce his obsessive thought patterns. We were willing to try it, hoping to stabilize his condition before school starts this Fall. (He missed all of last year homebound.)

 

This morning, he had his worst OCD moments yet, washing and sanitizing his hands for about an hour straight. When we tried to get him to stop and eat something (he's been almost anorexic for a couple of months), he broke down in tears, saying he couldn't stop and couldn't help it.

 

We feel pretty helpless.

 

Has anyone else had experience with Zyprexa? The doc who originally diagnosed our son's condition is more focused on complementary medicine, and we've been rigorous with lots of supplements (B-complex, B-12, D, SAMe, various minerals and multi-vitamins, etc.) for a year now. We always hoped to avoid the psych meds, but at this point we just want to find something that helps him feel better!

 

We're very grateful for any advice.

 

P.S.: Thanks to the wonderful info on this forum, we're setting up a telephone consult with Dr. K. Maybe he can steer us in the right direction!

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Hi

 

my son has Tourette Syndrome, not PANDAS, but has OCD also.

 

the *WORST* his OCD has ever been was when he was on zyprexa. we only had him on it a couple of days before having to titrate down as things were so bad!!! :) it also caused him lolling tongue, palpitations and signs of tardive dyskinesia

 

it was "the final straw" for us (and him!) on these kinds of meds (he had been on haldol, luvox and other before) and we were blessed to be able to find and start the natural treatments that have so helped him

 

5HTP really helped bring my son's OCD under control. he doesnt take it anymore (uses methionine and inositol only now) some people prefer l-tryptophan to 5HTP

it CANNOT be taken with any meds etc that elevate serotonin tho as that can casue serotonin syndrome which is dangerous

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To worried Dad..I know how hard it is to see your kid misrable. I definitely would try another med...not all work for everyone.

My son has alot of OCD thoughts and that's what I am hoping the abilify stops. he can't concentrate at all...I am dreading him going to school..he's a mess..good luck, Sarah

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Hi Worried Dad,

 

please check out my response to "1koolteacher". Perhaps you can glean some useful information from my experience with PANDAS.

 

By the way, I have heard good things about Dr. K...good luck with the phone consult.

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I'm new to this forum, but have already found it very helpful. (Been hanging out on the wemove.org Sydenham's chorea forum, because our son was originally diagnosed with SC. Great folks there, very helpful, but PANDAS seems to be the prevailing diagnosis for our son now.)

 

My 12-year-old son was diagnosed with acute rheumatic fever with Sydenham's last summer (2007). The violent seizure-like twitching episodes and tics have subsided, but the OCD-type symptoms seem to be getting worse. Our psychiatrist started him on Zyprexa about a month ago, certain that it would significantly reduce his obsessive thought patterns. We were willing to try it, hoping to stabilize his condition before school starts this Fall. (He missed all of last year homebound.)

 

This morning, he had his worst OCD moments yet, washing and sanitizing his hands for about an hour straight. When we tried to get him to stop and eat something (he's been almost anorexic for a couple of months), he broke down in tears, saying he couldn't stop and couldn't help it.

 

We feel pretty helpless.

 

Has anyone else had experience with Zyprexa? The doc who originally diagnosed our son's condition is more focused on complementary medicine, and we've been rigorous with lots of supplements (B-complex, B-12, D, SAMe, various minerals and multi-vitamins, etc.) for a year now. We always hoped to avoid the psych meds, but at this point we just want to find something that helps him feel better!

 

We're very grateful for any advice.

 

P.S.: Thanks to the wonderful info on this forum, we're setting up a telephone consult with Dr. K. Maybe he can steer us in the right direction!

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Dear Dad, I have experienced PANDAS with my son and overcome it with lots and lots of azithromycin. I have talked with Dr. Kovacevic and my son will be seeing him next month...if anyone gets this illness it is this doctor. Please email me at my home if you would like detailed info. I have worked extensively with several doctors at Stanford on PANDAS and recently gave a talk at Stanford about diagnostic criteria for PANDAS. Maybe I can help you if this is what you son has. My email is pohlmandiana@yahoo.com. Thanks

 

 

 

 

I'm new to this forum, but have already found it very helpful. (Been hanging out on the wemove.org Sydenham's chorea forum, because our son was originally diagnosed with SC. Great folks there, very helpful, but PANDAS seems to be the prevailing diagnosis for our son now.)

 

My 12-year-old son was diagnosed with acute rheumatic fever with Sydenham's last summer (2007). The violent seizure-like twitching episodes and tics have subsided, but the OCD-type symptoms seem to be getting worse. Our psychiatrist started him on Zyprexa about a month ago, certain that it would significantly reduce his obsessive thought patterns. We were willing to try it, hoping to stabilize his condition before school starts this Fall. (He missed all of last year homebound.)

 

This morning, he had his worst OCD moments yet, washing and sanitizing his hands for about an hour straight. When we tried to get him to stop and eat something (he's been almost anorexic for a couple of months), he broke down in tears, saying he couldn't stop and couldn't help it.

 

We feel pretty helpless.

 

Has anyone else had experience with Zyprexa? The doc who originally diagnosed our son's condition is more focused on complementary medicine, and we've been rigorous with lots of supplements (B-complex, B-12, D, SAMe, various minerals and multi-vitamins, etc.) for a year now. We always hoped to avoid the psych meds, but at this point we just want to find something that helps him feel better!

 

We're very grateful for any advice.

 

P.S.: Thanks to the wonderful info on this forum, we're setting up a telephone consult with Dr. K. Maybe he can steer us in the right direction!

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Wow - thanks, everybody. We appreciate all the positive comments and good info. My wife and I are already poring over some of the threads about protocols and what's worked for others. We're really hoping Dr. K can put us on the right path, too.

 

Thank you very much for all of the help!!!

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Dear Dad - Since your son had Rheumatic Fever (RF) - make sure you have an anti-D-Nase blood work done. This is the only test the shows what autoimmune response is occuring in his body. Anything above 160 for him will be high. If this has been in his system for awhile it won't be terribly high. My son (has had PANDAS one year) - is at 340. His Chorea/OCD has been "beaten back" with 250mg daily Azithro prophylaxis. Your son I would assume is on prophylaxis for RF? This is essential or he'll keep getting re-infected. please email me at pohlmandiana@yahoo.com as I don't go on forum often but woke up thinking you may not be doing this basic stuff?? Dr. K will help you.

 

 

 

I'm new to this forum, but have already found it very helpful. (Been hanging out on the wemove.org Sydenham's chorea forum, because our son was originally diagnosed with SC. Great folks there, very helpful, but PANDAS seems to be the prevailing diagnosis for our son now.)

 

My 12-year-old son was diagnosed with acute rheumatic fever with Sydenham's last summer (2007). The violent seizure-like twitching episodes and tics have subsided, but the OCD-type symptoms seem to be getting worse. Our psychiatrist started him on Zyprexa about a month ago, certain that it would significantly reduce his obsessive thought patterns. We were willing to try it, hoping to stabilize his condition before school starts this Fall. (He missed all of last year homebound.)

 

This morning, he had his worst OCD moments yet, washing and sanitizing his hands for about an hour straight. When we tried to get him to stop and eat something (he's been almost anorexic for a couple of months), he broke down in tears, saying he couldn't stop and couldn't help it.

 

We feel pretty helpless.

 

Has anyone else had experience with Zyprexa? The doc who originally diagnosed our son's condition is more focused on complementary medicine, and we've been rigorous with lots of supplements (B-complex, B-12, D, SAMe, various minerals and multi-vitamins, etc.) for a year now. We always hoped to avoid the psych meds, but at this point we just want to find something that helps him feel better!

 

We're very grateful for any advice.

 

P.S.: Thanks to the wonderful info on this forum, we're setting up a telephone consult with Dr. K. Maybe he can steer us in the right direction!

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