Re: Cyndi/Fw: uburns1 sent you a video: 2

[Guest guest]

Hi Cyndi,

I am so sorry to read that is back in the hospital. Gosh, you guys need a

break and some answers, pronto!!

I will be praying for both. Hugs,

To: ; DSAofLouisville

From: cynthiamiltonburns@...

Date: Wed, 25 May 2011 09:21:46 -0700

Subject: Fw: uburns1 sent you a video: " 2 "

Group, I have been off for a while. So I apologize. has been having health

issues since March that look like a seizure with pain. Currently is in the

hospital while the Dr.'s, nuerologist, heart Dr.'s etc are assessing his

situation and trying to figure out what is wrong. I am including a video of one

of his episodes. Yesterday had an EEG done and they ruled out seizure

however no test in 100% accurate. The other thinking is Dystonia which causes

muscle stiffening and is very painful. This is sometimes caused by meds like

Risperidal (risperidone), Abilify, and a new one called Saphris. is

currently taking Saphris and has previously taken Risperidone and Abilify. We

are going to take off the Saphris and put him on intravenous meds Ketogenic

I believe is the med they are going to used to try and reverse these episodes.

Any thoughts that you may have after watching the video please let me know. I

have posted 3 videos including this

one on U-tube. Cyndi Burns

Subject: uburns1 sent you a video: " 2 "

To: cynthiamiltonburns@...

Date: Wednesday, May 25, 2011, 12:14 PM

uburns1 sent you a video: " 2 "

help center

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uburns1 has shared a video with you on YouTube:

2

can anyone tell me what this attack is, our doctors have never seen anything

like this before.

By the way, did you know you can rent movies from YouTube? Check it out now:

youtube.com/movies.

© 2011 YouTube, LLC

901 Cherry Ave, San Bruno, CA 94066

[Guest guest]

, Thanks for the prayers. so scared when this happen and I feel

helpless as I know he is suffering pain. I hope we get this resolved soon.Cyndi

B

>

>

> Subject: uburns1 sent you a video: " 2 "

> To: cynthiamiltonburns@...

> Date: Wednesday, May 25, 2011, 12:14 PM

>

> uburns1 sent you a video: " 2 "

>

>

> help center

> | e-mail options

> | report spam

>

>

>

> uburns1 has shared a video with you on YouTube:

>

> 2

>

>

> can anyone tell me what this attack is, our doctors have never seen anything

like this before.

>

>

>

>

> By the way, did you know you can rent movies from YouTube? Check it out now:

youtube.com/movies.

>

> © 2011 YouTube, LLC

>

> 901 Cherry Ave, San Bruno, CA 94066

>

>

>

>

[Guest guest]

Hi Cyndi,

I can't see the link to watch the video. Maybe I'm being stupid. But we are

going through a similar situation right now with and i would love to

compare it with what he is doing. Seem like seizures but they keep raising his

meds and it's not helping. Now we are looking at possibly going in for a video

eeg in a couple of weeks. Mikey doesn't do well with those but we probably don't

have a choice. I hope feels better soon.

terry

uburns1 sent you a video: " 2 "

> To: cynthiamiltonburns@...

> Date: Wednesday, May 25, 2011, 12:14 PM

>

> uburns1 sent you a video: " 2 "

>

>

> help center

> | e-mail options

> | report spam

>

>

>

> uburns1 has shared a video with you on YouTube:

>

> 2

>

>

> can anyone tell me what this attack is, our doctors have never seen anything

like this before.

>

>

>

>

> By the way, did you know you can rent movies from YouTube? Check it out now:

youtube.com/movies.

>

> © 2011 YouTube, LLC

>

> 901 Cherry Ave, San Bruno, CA 94066

>

>

>

>

[Guest guest]

Terry, I was having the same problem getting to the link but found it by

pasting uburns1 sent you a video: " 2 "

in the Search on youtube and got the two links below.

Cyndi, I am going to send the links on to nurse friends who work with DD

individuals and see what they say. Louise, Mom to 48

<

& feature=related

<http://groups.yahoo.com/group//message/110633;_ylc=X3oDMTJyZjFlb2x

nBF9TAzk3MzU5NzE1BGdycElkAzQxMDMwNQRncnBzcElkAzE3MDUwMTM0ODEEbXNnSWQDMTEwNjM

zBHNlYwNkbXNnBHNsawN2bXNnBHN0aW1lAzEzMDY0MTE0ODc-> Re: Cyndi/Fw: uburns1

sent you a video: " 2 "

Posted by: " Terry "

<mailto:terese11@...?Subject=%20Re%3A%20Cyndi%2FFw%3A%20uburns1%20sent%2

0you%20a%20video%3A%20%222%22> terese11@...

<http://profiles.yahoo.com/terri657> terri657

Wed May 25, 2011 4:21 pm (PDT)

Hi Cyndi,

I can't see the link to watch the video. Maybe I'm being stupid. But we are

going through a similar situation right now with and i would love to

compare it with what he is doing. Seem like seizures but they keep raising

his meds and it's not helping. Now we are looking at possibly going in for a

video eeg in a couple of weeks. Mikey doesn't do well with those but we

probably don't have a choice. I hope feels better soon.

terry

To: <mailto:%40yahoogroups.com> ;

<mailto:DSAofLouisville%40yahoogroups.com> DSAofLouisville

From: cynthiamiltonburns@...

Date: Wed, 25 May 2011 09:21:46 -0700

Subject: Fw: uburns1 sent you a video: " 2 "

Group, I have been off for a while. So I apologize. has been having

health issues since March that look like a seizure with pain. Currently

is in the hospital while the Dr.'s, nuerologist, heart Dr.'s etc are

assessing his situation and trying to figure out what is wrong. I am

including a video of one of his episodes. Yesterday had an EEG done and

they ruled out seizure however no test in 100% accurate. The other thinking

is Dystonia which causes muscle stiffening and is very painful. This is

sometimes caused by meds like Risperidal (risperidone), Abilify, and a new

one called Saphris. is currently taking Saphris and has previously

taken Risperidone and Abilify. We are going to take off the Saphris and

put him on intravenous meds Ketogenic I believe is the med they are going to

used to try and reverse these episodes. Any thoughts that you may have after

watching the video please let me know. I have posted 3 videos including this

one on U-tube. Cyndi Burns NOTE: in a later post Cyndi clarified the

Ketogenic was Cogentin.

Subject: uburns1 sent you a video: " 2 "

To: cynthiamiltonburns@...

Date: Wednesday, May 25, 2011, 12:14 PM

uburns1 sent you a video: " 2 "

[Guest guest]

Thanks I got it.

Terry

uburns1 sent you a video: " 2 "

To: cynthiamiltonburns@...

Date: Wednesday, May 25, 2011, 12:14 PM

uburns1 sent you a video: " 2 "

[Guest guest]

Terry & , Here is a new link to try to view the video of . They think

has Dystonia from meds like Risperidone, Abilify, and Saphris. They treat

with valium and benedryl however those meds make go crazy so they tried

Cogentin but it has the same affects at those others. Not sure what plan is

going to be. Dystonia can affect the rectum muscles, facial, limbs, breating and

it is painful very painful. http://youtu.be/DsYsy1zGlJ8

Cyndi Burns

> >

> > From: YouTube Service <service@>

> > Subject: uburns1 sent you a video: " 2 "

> > To: cynthiamiltonburns@

> > Date: Wednesday, May 25, 2011, 12:14 PM

> >

> > uburns1 sent you a video: " 2 "

> >

> >

> > help center

> > | e-mail options

> > | report spam

> >

> >

> >

> > uburns1 has shared a video with you on YouTube:

> >

> > 2

> >

> >

> > can anyone tell me what this attack is, our doctors have never seen anything

like this before.

> >

> >

> >

> >

> > By the way, did you know you can rent movies from YouTube? Check it out now:

youtube.com/movies.

> >

> > © 2011 YouTube, LLC

> >

> > 901 Cherry Ave, San Bruno, CA 94066

> >

> >

> >

> >