a 4 u link - California psychiatrist talks about pandas

[TessaKrista]

Sorry...title should read "Two Links For You - California psychiatrist talks about pandas"

 

video clip:

 

http://beverlyhillsshrink.blogspot.ca/search/label/P.A.N.D.A.S.

 

 

plus a discussion on the topic by the same psychiatrist : http://beverlyhillsshrink.blogspot.ca/search/label/PANDAS

 

another video clip: http://beverlyhillsshrink.blogspot.ca/2011/11/video-blog-evil-pandas-scourge-on-brain.html

 

another article: http://www.psychologytoday.com/blog/attention-please/201203/pandas-patients-parents-and-physicians-0

Edited April 2, 2012 by Sweet Cheeks Mom

[LindaMW]

Wow, he said it exactly how it is. I really wish our pedi would listen to this, he is a "I don't beleive that exists" kind of person.

 

I am printing out his article, the other link you posted. Why can't these doctors believe that this is happening? I just wish he had some more ideas of what can be done. He didn't seem to be too optimistic about the popular forms of treatment. But what else can we do? I agree they do need to get to the real cause and not just treat a few symptoms. This is the argument we are having with the psycharist that runs the OCD clinic we are in. She wants our son on Prozac and we told her we tried it and it was an ugly experience. He became hyper and had hallucinations. Her reasoning was he was not on a high enough dosage.

 

I really hope they can find something out soon. Maybe this conference they are having in May will shed some light on things.

 

Thanks for this info Sweet Cheeks Mom.

 

Linda

[EAMom]

Wow, he said it exactly how it is. I really wish our pedi would listen to this, he is a "I don't beleive that exists" kind of person.

 

I am printing out his article, the other link you posted. Why can't these doctors believe that this is happening? I just wish he had some more ideas of what can be done. He didn't seem to be too optimistic about the popular forms of treatment. But what else can we do? I agree they do need to get to the real cause and not just treat a few symptoms. This is the argument we are having with the psycharist that runs the OCD clinic we are in. She wants our son on Prozac and we told her we tried it and it was an ugly experience. He became hyper and had hallucinations. Her reasoning was he was not on a high enough dosage.

 

I really hope they can find something out soon. Maybe this conference they are having in May will shed some light on things.

 

Thanks for this info Sweet Cheeks Mom.

 

Linda

 

Eek! What dose was he on? Pandas kids can be very sensitive to SSRI's, so you want to be VERY careful about raising doses. My dd is on 10mg /Prozac and it does help her anxiety. Part of the benefit may be that SSRI's are anti inflammatory.

 

But you have to be VERY careful. The first SSRI we tried (lexapro) helped OCD somewhat but also caused akathesia (inner restlessness) and increased aggression.

[corinthdad]

Dr Triffiletti & Dr Goodman need to combine forces for an east / west coast assault on the medical establishment.

[PowPow]

Dr Triffiletti & Dr Goodman need to combine forces for an east / west coast assault on the medical establishment.

 

Excellent idea! Hey, how are things going for your girl in NY?

Edited April 4, 2012 by PowPow

[tpotter]

Wow, he said it exactly how it is. I really wish our pedi would listen to this, he is a "I don't beleive that exists" kind of person.

 

I am printing out his article, the other link you posted. Why can't these doctors believe that this is happening? I just wish he had some more ideas of what can be done. He didn't seem to be too optimistic about the popular forms of treatment. But what else can we do? I agree they do need to get to the real cause and not just treat a few symptoms. This is the argument we are having with the psycharist that runs the OCD clinic we are in. She wants our son on Prozac and we told her we tried it and it was an ugly experience. He became hyper and had hallucinations. Her reasoning was he was not on a high enough dosage.

 

I really hope they can find something out soon. Maybe this conference they are having in May will shed some light on things.

 

Thanks for this info Sweet Cheeks Mom.

 

Linda

 

 

Show him/her the NIMH website: "go low, and go slow."

[corinthdad]

Dr Triffiletti & Dr Goodman need to combine forces for an east / west coast assault on the medical establishment.

 

Excellent idea! Hey, how are things going for your girl in NY?

Thanks for asking . All things considered she is doing much better . After a year of cycles of making it through some days & some on the couch she is now making it through most every day , as well as starting pitcher on varsity softball as a sophomore.She hasn't lasted through a full game yet.This weekend she ran & played around the yard like I haven't seen in a long time & I knew she may have this almost beat.we didn't get much help from the medical industry other than Dr T.She responded well from a homeopath / nutritionist (vit d , metal detox, immune stuff ,changed diet) then Dr T put her on biaxin for 10 days & she really came around.After she stopped abx she did some ticking & suffered with a bad bout of costocongritis so her local doc doped her heavy on Motrin & that worked well for that.

So as far as my dd , I feel good . as far as the other people suffering , I feel bad.I have seen enough of the ignorance & arrogance in the medical industry to make ME sick . I am concerned that the dept of health , cdc , fda , & the media are are being heavily pressured to hide this illness & possibly try to shut down any doctors working on it(same goes for lime & autism).

 

Thanks again for asking

[nicklemama]

I have seen enough of the ignorance & arrogance in the medical industry to make ME sick

 

I couldn't agree more.

[PowPow]

Corinth dad,

It makes me smile to read she is on her way up.

And..... You are so right about the ignorance (and pompousness) of many in the medical community. Maybe all our kids will go out and make a difference in this field!

Thanks for updating us!

[fightingmom]

Thank you for posting that video! I have sent it to a few friends and family members. Will also post on facebook. And, may actually forward to some local doctors! I think sending this information to DOCTORS is going to be a our key. I am going to start bombarding our therapists and doctors with information and studies. We have no one else working on our behalf, we need to do the educating!

[TessaKrista]

Thank you for posting that video! I have sent it to a few friends and family members. Will also post on facebook. And, may actually forward to some local doctors! I think sending this information to DOCTORS is going to be a our key. I am going to start bombarding our therapists and doctors with information and studies. We have no one else working on our behalf, we need to do the educating!

 

 

Yes...we need to do the educating. Not all doctors are on board with Pandas, which is so odd, considering that there is a lot of discussion on scholarly journals about PANDAS and now PANS. In Ontario, it is funny, but doctors are not believing that this is real, which is so odd, considering that it is very real.

 

I do searches, and find so much stuff on this topic, including parents and children going on tv and talking about it, yet....there are still skeptics out there. Odd really. Using the pandas or pans term makes it a psychiatric disorder, and not an immunological disorder or a neurological disorder. That isn't really good, because it is seen as a "mental illness" which is fraught with stigma. If it is classified as a neurological disorder or an immune system issue, like rheumatic fever, rheumatoid arthritis etc... then the world will see it differently. My hope is that it will eventually be classified as an immune system disorder, and treated accordingly, including courses of antibiotics, ivig and pex. But...the "neuropsychiatric word" in pandas or pans, leads me to think that eventually it will be classified in the DSM as a psychiatric illness, with the social stigma that accompanies it. However, if it means that by putting it into the DSM, children will be helped with antibiotics, ivig and pex, then so be it. Psychiatrists don't typically use antibiotics etc, they prescribe antipsychotics, so I found it refreshing to see the video clip by that California psychiatrist. He brings it to light. He makes this pandas stuff real. Hopefully other doctors will see how real it is as well.

 

He sees it in adults, which is also interesting. Perhaps 20 years from now we will know about it as much as we know about lupus or rheumatoid arthritis. It might be commonplace discussion in 20 years. We are just at the forefront of breaking ground, having people talk about it.

 

Dr T really put pandas on the map with the 12 girls who were experiencing it. You know, the ones who were diagnosed with conversion disorder, before he came along, and tested them for strep titers and mycoplasma.

 

I still feel like we live in a world where there is this great forum, with so much sharing of info, and some really keen doctors who are so aware of this disorder....while at the same time, the rest of the world doesn't seem to know about it. Odd.

 

Yes...if it means that a psychiatrist presenting information on this topic will open the eyes of some doctors, then let's share the information with other doctors.

[EAMom]

Dr Triffiletti & Dr Goodman need to combine forces for an east / west coast assault on the medical establishment.

 

Excellent idea! Hey, how are things going for your girl in NY?

Thanks for asking . All things considered she is doing much better . After a year of cycles of making it through some days & some on the couch she is now making it through most every day , as well as starting pitcher on varsity softball as a sophomore.She hasn't lasted through a full game yet.This weekend she ran & played around the yard like I haven't seen in a long time & I knew she may have this almost beat.we didn't get much help from the medical industry other than Dr T.She responded well from a homeopath / nutritionist (vit d , metal detox, immune stuff ,changed diet) then Dr T put her on biaxin for 10 days & she really came around.After she stopped abx she did some ticking & suffered with a bad bout of costocongritis so her local doc doped her heavy on Motrin & that worked well for that.

So as far as my dd , I feel good . as far as the other people suffering , I feel bad.I have seen enough of the ignorance & arrogance in the medical industry to make ME sick . I am concerned that the dept of health , cdc , fda , & the media are are being heavily pressured to hide this illness & possibly try to shut down any doctors working on it(same goes for lime & autism).

 

Thanks again for asking

 

Yay! I'm glad she is doing better. It sounds like she is in good hands with a dad like you! re the vitamin D...I'll bet a lot (all?) of those girls in Le Roy/Corinth were/are vit D deficient. My dd just came back borderline low (our lab's "normal" is more than 30). She was 29. I surprised me she wasn't higher b/c she's is outside for about 1.5 hours starting at 1:45pm in shorts/t-shirt (PE and then walking home) every afternoon. We're in Northern CA.

Edited April 4, 2012 by EAMom

[corinthdad]

I just finished a long meeting with a couple reps doing a PBS type documentary on the situation here in NY.They made it very clear they are aware that this goes way beyond a couple groups of cases in NY so im guessing a much bigger national or international scope may be included . It looks like the DENT Institute has successfully convinced the Rochester cases to keep silent , away from the media & competent doctors , so we may not get much help there.They expressed great interest in pursuing this so if any one has any suggestions or contact info that may help , don't be shy. If there is an interest I could ask if I can post their e-mail here & you can run with it . Being a self employed contractor I spend very little time on line.EMOM good to here from you, sounds like dd is doing ok?.

[corinthdad]

my original stipulation for our involvement in the documentary was that Dr T is to be included & on board in hopes that our cases would be properly represented.

[fightingmom]

my original stipulation for our involvement in the documentary was that Dr T is to be included & on board in hopes that our cases would be properly represented.

 

Good for you!!!

 

Did they give any indication as to when the documentary would be available?