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RE: Has any one ever heard of this? - 1/24/2012 9:53:57 PM   
kjade


Posts: 39
Joined: 1/23/2012
Status: offline 		They are saying that OCD and ADHD are often misdiagnosed for pandas not that they are the causes. PANDAS is caused my the streptococcal virus or scarlet fever spreading to the brain and causing damage in the area that is also affected in torrets syndrome. I know two people with pandas and one is a guy I gre up with and although it cannot be fully cured it doesn't affect you in any fashion other than the tics and vocal outbursts. With treatment it can be somewhat controlled to where the tics still occur but you can damper the vocal part.

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RE: Has any one ever heard of this? - 1/24/2012 9:55:44 PM   
Duskypearls


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quote:

ORIGINAL: kjade

Have you looked into PANDAS disease. It is caused by strep infection and results in torrets like symptoms.


Wow, that's the first I've heard of this. Amazing.

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RE: Has any one ever heard of this? - 1/24/2012 9:57:20 PM   
kjade


Posts: 39
Joined: 1/23/2012
Status: offline 		They are saying that OCD and ADHD are often misdiagnosed for pandas not that they are the causes. PANDAS is caused my the streptococcal virus or scarlet fever spreading to the brain and causing damage in the area that is also affected in torrets syndrome. I know two people with pandas and one is a guy I gre up with and although it cannot be fully cured it doesn't affect you in any fashion other than the tics and vocal outbursts. With treatment it can be somewhat controlled to where the tics still occur but you can damper the vocal part.

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RE: Has any one ever heard of this? - 1/24/2012 9:58:02 PM   
xXLithiumXx


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Joined: 9/2/2008
From: Hell, Kentucky
Status: offline 		That's good to know.

Right now she is handling it really well, and is facing it like a trooper. She is mouthy like me though, so when people look at her funny she gets all "Whatchoo looking at dood". Lol. She even likes to play music and try to see if it times to the beat. But, I can tell it wears on her and it starting to work her over pretty good.

I will take this information to the new doc with me and see what we can find out.

Thank you so much. I hope this is something valid and not just a tossed out answer.

I know the doctor probably never thought of something like PANDAS, but you would think that he would have looked at her chart to see that she had strep just a week before.

It wasn't like she was seen in a different office. Maybe now we can get a treatment that may be more in line with what she is experiencing. I hate that she may be taking this medicine for no reason. I am not going to take her off of it with out talking to both doctors first, which I plan on calling them in the morning.

Thank you again!

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RE: Has any one ever heard of this? - 1/24/2012 10:02:38 PM   
kjade


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Joined: 1/23/2012
Status: offline 		Good luck. I'm glad to hear that she is a strong girl. I can't imagine what emotional damage going through something like tht is on a girl at that age where they are at thier most sensible and emotional. I hope that she gets the proper diagnosis and treatment.

< Message edited by kjade -- 1/24/2012 10:10:08 PM >

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RE: Has any one ever heard of this? - 1/24/2012 10:14:44 PM   
Duskypearls


Posts: 3561
Joined: 8/21/2011
Status: offline 		Lithium, I came upon these:

http://www.pandasconnection.com/

http://www.homeopathyhouston.com/homeopathy-blog/?tag=homeopathy-for-pandas

http://webpediatrics.com/pandasclinicalcases.html

http://recoveringnicholas.com/2010/09/11/homeopathy-recovery-story-autism-pandas/

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RE: Has any one ever heard of this? - 1/24/2012 10:19:40 PM   
Awareness


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Status: offline 		  This is a real long shot but it might be worthwhile to see if she has anti-bodies for Lyme disease.

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RE: Has any one ever heard of this? - 1/24/2012 10:24:18 PM   
kjade


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Joined: 1/23/2012
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quote:

ORIGINAL: Awareness

  This is a real long shot but it might be worthwhile to see if she has anti-bodies for Lyme disease.




I agree ^^ both Lyme disease and lupus are autoimmune diseases that have similar neurological symptoms in some cases.

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RE: Has any one ever heard of this? - 1/24/2012 10:35:19 PM   
SilverBoat


Posts: 257
Joined: 7/26/2006
Status: offline 		Okay, I'm an engineer by training and trade, but I've read for biochemistry and neurophysics too, and try to keep up with things. Not all of the latest research papers are available online, but the fMRI work in the study below is somewhat seminal on the underlying mechanisms of conversion disorder.

http://brain.oxfordjournals.org/content/133/5/1526.full

Despite the lack of rigorous proofs so far, I'd go out on somewhat of a theoretical limb, and suggest that there's a diffuse but definite swath of cause-effect evidence between immune-response (infections, vaccines, fevers, etc) and a wide spectrum of juvenile-'onset' mental and physical phenomena. Maybe some day they'll figure something out, or maybe I'm completely out to lunch, but in your case the conversion disorder started very soon after the illness ended. Back in the days when measles etc were epidemic, severe neurological damage wasn't uncommon; deafness, blindness, paralysis, retardation, etc.

Nowadays, even though the illnesses may not appear as severe, the effects may be more subtle, perhaps only a small lesion, or receptor sensitization, and that can be enough to cause the brain's equivalent of hiccups.  Ed: (Pandas is, I think, too specific to certain microbes, gross neurochemistry, and severe behavioral effects.)

Anyway, there definitely are some suspected neurological causes for such 'onset' disorders. I'm not up to date on treatments, though. Most of the drugs they're trying seem very heavy handed. Some of the biofeedback trials might yield better long-term results. I dunno what else to comment, other than good vibes for both of you.

SB

< Message edited by SilverBoat -- 1/24/2012 10:51:55 PM >

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RE: Has any one ever heard of this? - 1/24/2012 10:49:41 PM   
kjade


Posts: 39
Joined: 1/23/2012
Status: offline 		I would lean towards pandas in this case since it came right after a severe strep infection and the symptoms match. Just my opinion. It is always better to leave no stone unturned and if your gut believes it is something more then follow your motherly instinct and look into other possibilities. It's your baby girl and you don't want to take a docs word unless you get her checked for any other possible cause.

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RE: Has any one ever heard of this? - 1/25/2012 4:36:40 AM   
angelikaJ


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Status: offline 		What medications was she put on?

I haven't seen the video but I am thinking a sudden change could be an atypical reaction to a med...?

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RE: Has any one ever heard of this? - 1/25/2012 5:55:38 AM   
xXLithiumXx


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From: Hell, Kentucky
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quote:

ORIGINAL: angelikaJ

What medications was she put on?

I haven't seen the video but I am thinking a sudden change could be an atypical reaction to a med...?



When we went in for the strep, they gave her a short term antibiotic, like one of the 5 day deals? But she has had that before. No pain meds. And these little cough bead things that look like fish oild tablets, but she has had all of these before.

When we went to the ER for the pleurisy, because I really thought she was having a freaking heart attack, they gave her dilaudid for the pain, which I thought was extreme, and some tramadol and zofram. The only one in that mix she had never had was dilaudid, but she was seen on Monday, and the symptoms didn't present until Friday.

Now we have this antiseziure medication, which...kind of freaks me out, so I am really watching how she behaves on it, but nothing really seems to be happening.

Just based off of what I have read so far, and the insane amount of commonalities, I am going to present PANDAS as the first one to be looked into. I just think it is too much of a coincidence that it all happened at once.



_____________________________

If Barbie is so popular, why do you have to buy her friends?

Ideas don't stay in some minds very long because they don't like solitary confinement


You have to believe in yourself. -Tsun Tzu-

Resident Malkavian.

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RE: Has any one ever heard of this? - 1/25/2012 5:56:55 AM   
xXLithiumXx


Posts: 723
Joined: 9/2/2008
From: Hell, Kentucky
Status: offline
quote:

ORIGINAL: Awareness

  This is a real long shot but it might be worthwhile to see if she has anti-bodies for Lyme disease.



I am going to mention this also, but, she hasn't been tick bitten, and there are no kinds of marks that show where she may have been and we just didnt know.

Plus, there is no fever, or physical symptoms, beyond the vocalizations and twitching.

_____________________________

If Barbie is so popular, why do you have to buy her friends?

Ideas don't stay in some minds very long because they don't like solitary confinement


You have to believe in yourself. -Tsun Tzu-

Resident Malkavian.

(in reply to Awareness)
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RE: Has any one ever heard of this? - 1/25/2012 6:41:56 AM   
LadyHibiscus


Posts: 27124
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From: Island Of Misfit Toys
Status: offline 		Wow, this is a new one for me...I got nothing but beamage! It's obvious that you are already advocating for your daughter and are not going to let the medical profession ride over you! Keep fighting, and don't worry who you piss off. It's the only way.

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RE: Has any one ever heard of this? - 1/25/2012 7:10:12 AM   
DesFIP


Posts: 25191
Joined: 11/25/2007
From: Apple County NY
Status: offline 		My daughter spent a month on serious antibiotics last year for Lyme's. No bite marks, no fever, nothing but personality changes. She cried all the time. Since Lymes is rampant here, the doctor tested her and her titers came back very high.

It's a simple blood test and well worth doing. Lymes has a habit of weird manifestations.


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RE: Has any one ever heard of this? - 1/25/2012 7:33:59 AM   
Rule


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Joined: 12/5/2005
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quote:

ORIGINAL: xXLithiumXx
No fever, no kind of gastro anything, no sinus anything.

Two weeks ago, she had strep, and on the heels of that, most likely picked up as an upper respiratory infection, she had pleurisy. This was all over the span of two weeks.


quote:

ORIGINAL: xXLithiumXx
is NOT sexually active. Unless she is doing it in the hall at school, which I do not think she could get by with.


quote:

ORIGINAL: xXLithiumXx
When we went in for the strep, they gave her a short term antibiotic


So my question: Has she kissed anyone during the past month? If so, it might be herpes simplex or Pfeiffer's Disease (also a herpes virus). The strep then likely was a secondary disease that masked the primary disease of herpes.

If that is the case, I also would like to know the name of the antibiotic.

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RE: Has any one ever heard of this? - 1/25/2012 8:53:34 AM   
xXLithiumXx


Posts: 723
Joined: 9/2/2008
From: Hell, Kentucky
Status: offline 		FR-

Rule,

No, she has never been sexually active. No kissing. Nothing. She has no interest in sexuality right now, which I know sounds odd, but her education is her primary concern.

I thought of that too. Maybe something had been transmitted during making out or whatever. She said if I accused her of having sex again she was going to black my eye. She said sex is for dumbasses. Lol.

She has always been like that, though, and I don't think I can disagree with her.

We go to the new doctor this afternoon. I am going to have him look at the PANDAS thing, because I feel like it is the most closely related to what is going on with her.

I just think that chalking it up to nothing more than hysteria is a bullshit call on his part.

_____________________________

If Barbie is so popular, why do you have to buy her friends?

Ideas don't stay in some minds very long because they don't like solitary confinement


You have to believe in yourself. -Tsun Tzu-

Resident Malkavian.

(in reply to Rule)
Profile   Post #: 37
RE: Has any one ever heard of this? - 1/25/2012 9:05:14 AM   
LaTigresse


Posts: 26123
Joined: 1/15/2006
Status: offline 		My heart goes out to both of you. My daughter had something like that when she was in her teens. To be honest, I don't remember what was going on prior to that, other than she was on an anti-depressant that was later discovered to cause Tourettes like symptoms and seizures. It was a difficult time.


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My twisted, self deprecating, sense of humour, finds alot to laugh about, in your lack of one!

Just because you are well educated, articulate, and can use big, fancy words, properly........does not mean you are right!

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RE: Has any one ever heard of this? - 1/25/2012 10:00:24 AM   
Rule


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Joined: 12/5/2005
Status: offline
quote:

ORIGINAL: xXLithiumXx
We go to the new doctor this afternoon. I am going to have him look at the PANDAS thing, because I feel like it is the most closely related to what is going on with her.

Indeed.

quote:

ORIGINAL: xXLithiumXx
I just think that chalking it up to nothing more than hysteria is a bullshit call on his part.

I agree.

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RE: Has any one ever heard of this? - 1/25/2012 10:02:19 AM   
Rule


Posts: 10479
Joined: 12/5/2005
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quote:

ORIGINAL: LaTigresse
My heart goes out to both of you. My daughter had something like that when she was in her teens. To be honest, I don't remember what was going on prior to that, other than she was on an anti-depressant that was later discovered to cause Tourettes like symptoms and seizures. It was a difficult time.

Hm.

Maybe it is time to investigate the side effects of that antibiotic, Lithium.

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Profile   Post #: 40
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