My son with PANDAS is on ABC News 20/20 tonight...

[momtocole1]

Please watch 20/20 tonight on ABC at 10:00 p.m. PST. I'm not sure what time it is on in other states. I'm in California. 20/20 was at our home back in April filming for 4 days. I chose to use medical marijuana as part of my sons treatment for OCD and anxiety due to PANDAS. He has also had two IVIG's over the last 6 months.

 

Medcial marijuana has been just a component in his healing process, a tool in my toolbox to treat his extreme anxiety and panic attacks while we aggressively are working to stop the autoimmune reaction going on in his body.

 

I was willing to put my son on 20/20 because not only did I want to get the word out about PANDAS. I thought if I can inspire even one parent to consider this alternative treatment for their child (in the states where it is legal) and they find relief from it, then that is a beautiful thing.

 

I want to take away the stigma of this natural medicine. I have formed a group of Mom's that are doing this for their special needs children under a doctor's supervision. I have doctor's from some very well known local medical facilities that are seeking out this alternative treatment for their patients with special needs.

It is a beautiful day, change is coming...

 

Wish me luck....

 

I tried anti-psychotic drugs, I tried SSRI's for my son and they did not work.

[thereishope]

It's on at 10 pm Eastern Time.So I get to watch it before you

[peglem]

Please watch 20/20 tonight on ABC at 10:00 p.m. PST. I'm not sure what time it is on in other states. I'm in California. 20/20 was at our home back in April filming for 4 days. I chose to use medical marijuana as part of my sons treatment for OCD and anxiety due to PANDAS. He has also had two IVIG's over the last 6 months.

 

Medcial marijuana has been just a component in his healing process, a tool in my toolbox to treat his extreme anxiety and panic attacks while we aggressively are working to stop the autoimmune reaction going on in his body.

 

I was willing to put my son on 20/20 because not only did I want to get the word out about PANDAS. I thought if I can inspire even one parent to consider this alternative treatment for their child (in the states where it is legal) and they find relief from it, then that is a beautiful thing.

 

I want to take away the stigma of this natural medicine. I have formed a group of Mom's that are doing this for their special needs children under a doctor's supervision. I have doctor's from some very well known local medical facilities that are seeking out this alternative treatment for their patients with special needs.

It is a beautiful day, change is coming...

 

Wish me luck....

 

I tried anti-psychotic drugs, I tried SSRI's for my son and they did not work.

I have seriously considered trying MJ for my daughter, but it is not legal here. I finally decided she would be worse off w/ her mommy in jail. And I know so little about MJ and, of course, would have to buy it from dubious sources (I don't know how to do that either). At this point, I don't think she needs it anymore, but sure thought it would be nice to have it by prescription, with dosage and content regulated. I'll watch if I can...

[airial95]

Mommy might like to try that method...

 

Seriously though, I'll be watching!

[JAG10]

My initial reaction when reading your post was...What? Wait a minute, that's what I'm trying to get rid of! That silly, goofy, or stupor demeanor.

 

I look forward to watching tonight with an open mind and sympathetic heart.

[MomWithOCDSon]

I'll be watching, too.

 

My only concern, prior to watching, would be that with my DS, at 13, if a little marijuana helped asuage the anxiety, he might be prone to thinking that more . . . and more . . . . and more . . . would help him even more. Not sure how old your child is, but at my DS's age, the "mixed message" I'd be sending, even if the pot were prescribed by a physician, makes me nervous.

 

Anybody else?

Edited July 24, 2010 by MomWithOCDSon

[Suzan]

Thanks for letting us know. I've got it on record to watch tomorrow.

 

Susan

[becjonz]

My initial reaction when reading your post was...What? Wait a minute, that's what I'm trying to get rid of! That silly, goofy, or stupor demeanor.

 

I look forward to watching tonight with an open mind and sympathetic heart.

 

I had that same thought. Gosh if DS got sillier or more out it at times I'd throttle him. (can you tell it has been a challenging day with him? lol) But seriously I will try to watch with an open mind. The sympathetic heart will be easier because when it comes to PANDAS it is not my place to judge, we all need to work so hard to find what is right for our kids and honestly I'm not educated enough on medical marijuana. Your efforts will help to solve that.

 

I'll be watching, too.

 

My only concern, prior to watching, would be that with my DS, at 13, if a little marijuana helped asuage the anxiety, he might be prone to thinking that more . . . and more . . . . and more . . . would help him even more. Not sure how old your child is, but at my DS's age, the "mixed message" I'd be sending, even if the pot were prescribed by a physician, makes me nervous.

 

Anybody else?

Yeah, this too worries me. There are so many reasons for my pending divorce but one of them was the discovery of my husbands use of pot. This is not an influence I want my kids around so the idea of providing it to my child is a whole other question for me. I'll be curious to learn more because my DH was thinking that he could use it to help with sleep but didn't factor in that he is bipolar. His doctor and I spent a year puzzled as to why meds wouldn't work, why he withdrew more and more from us, his family and so on. When I discovered the pot I was not surprised that it had been a year that he'd been smoking because it coincided with behavior changes. Why the TMI about DH? My point (I do have one ) is I'd be very concerned about mixing pot with illnesses in the realm of mental disorders. After speaking with psychiatrist who works with rehab I'm more aware of how pot does not work the same for those with mental illness as it does for others. Since PAMDAS causes symptoms that appear to be mental illness but are not truly based in that I'm curious how the mechanism in the brain would work.

 

I'm eager to watch and learn something new.Thanks for passing on the info and bringing awareness for PANDAS

[JAG10]

East Coast, the segment is on now.

[becjonz]

Wish the segment had actually mentioned PANDAS...

[airial95]

I called my mom to watch and stayed up for that? No mention whatsoever!

 

Momtocole: I do have to say the footage of your son brought tears to our eyes- we saw so much of our son in the segment. If medical pot was legal here I'm sure we'd also consider it. Good luck on your continued fight!

[airial95]

I called my mom to watch and stayed up for that? No mention whatsoever!

 

Momtocole: I do have to say the footage of your son brought tears to our eyes- we saw so much of our son in the segment. If medical pot was legal here I'm sure we'd also consider it. Good luck on your continued fight!

[kimballot]

Mom to Cole - Thanks for letting us know it was going to be on. You came across very well and clearly concerned and educated about this choice for your son.

 

I was wondering if would share a bit more about your son's PANDAS and what PANDAS treatments you've tried. It sounded like his symptoms were pretty static from the TV segment - I am wondering if there are exacerbations and remissions and if you've tied it to infections. Is he in an exacerbation right now, or is this his baseline?

 

 

 

Thanks!

[EmersonAilidh]

I'm not too entirely sure as to what I can/can't say (Marijuana is NOT legal at ALL down here in Tejas), but it DOES help. It helped with anxiety. It helped with the pain I have in my shoulders. It helped me to be social. I haven't used it in a year & four months simply because I got tired of the "stoned" feeling & decided that it wasn't worth it in the long run, & I know it's definitely not for everyone but I wouldn't be so quick to dismiss it. I don't get "silly" with my P.A.N.D.A.S. though, I get angry & withdrawn. So being a little more open & a little more open & bubbly was definitely a welcome change.

 

That being said, I obviously didn't go the "medical" route. Along with getting tired of the "stoned" feeling that accompanied it, I got tired of having to be around shady people. I was sick & tired of not getting support from my family, I was sick & tired of not getting the treatment that I needed so badly, but above all else I was sick of being sick & tired of being tired. At the time, in all honesty, if hanging out with people that I couldn't stand even then (I have always HATED the stoner lifestyle) meant getting to feel a little relief, it was worth it. Now that the EXCRUCIATING pain that I had in my shoulders (by far one of the WORST symptoms that I had ever had, if that was even it) has all but vanished without a trace, I couldn't justify having to deal with people that I hated. When & if medical marijuana is legalized down south, I would be more than interested in trying again. But until then, there will be none for me.

[mama2alex]

OMG! I'm watching now, and I haven't even gotten to the segment on medical marijuana. I'm watching the part about the cheerleader who got the flu shot and developed a severe movement disorder. It's absurd, 20/20 is implying that it's all in her head! The flu shot didn't hurt her, of course not - she's nuts! It's awful. And on top of that, they're persecuting Dr. Buttar, who obviously did provide her with some degree of healing, although 20/20 is twisting it to make it seem like he's a total quack for using - GASP - CHELATION! I had mercury poisoning, so I know from personal experience that it works. Apologies for the rant, but this is so upsetting. The poor girl!

Edited July 24, 2010 by mama2alex